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#162702 03-12-2013 12:19 AM
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So, almost three years since the end of my treatment for SCC of the tonsil in Canada, I've just learned I have not so much a recurrence as a metastasis. Yep, same cancer (genotyped) has appeared on the inside edge of my left lung (lymph system, very close to my aorta) and I start chemo here in London tomorrow, all of 13 days since diagnosis. Cisplatin one night then 4 days of 5FU. Three 3-week cycles, then some radiation to polish it off, if all goes well. They'll keep me in the hospital for each 5-day drip.

I'm over the scared stage. This treatment is not expected to be as hard as last time. I have the best of care at a world-class cancer hospital (The Royal Marsden), gold-plated private medical insurance (on top of what the NHS offers), excellent support of family, friends and colleagues.

It's an instant Stage 4c due to the metastasis, is incredibly rare to the point that they don't really have viable statistics to refer to, and means I'll be in 'monitoring' for the rest of my life until they figure something new out. On the plus side, since it is the same cancer and has been most of three years from treatment, all indications are that it should be a 'soft' cancer, and responsive to treatment.

Not pretending this is going to be a walk in the park, but I think I know what I'm in for, and it almost cannot possibly be as hard as last time, down to location and treatment plan (chemo-based with radiation polish and targeting my chest rather than my face/throat, rather than radiation-based with chemo enhancement, targeting my face and throat!).

Looking back, I had a little pinchy pain 'deep in my left pecktoral muscle' some time late in 2012, which went away, then early in the new year this came back and got worse the next day, and sort of moved to the back of my shoulder. That was odd, and I couldn't really explain it, so saw my GP, who diagnosed likely viral pleurisy, which would run its course in 4-6 weeks. I also happened to see my Oncologist, who only because he could, and out of an excess of caution, ordered up a CT scan. Well, the CT scan showed a 'suspicious shadow' in my left lung, and the only thing for it was a needle biopsy of my left lung through my ribs (that was interesting), and a week later I learned that it is in fact a return of my original cancer, this being very very rare indeed, but not much of a doubt about it. Lucky me!

I actually feel fine at the moment, physical symptoms have in fact settled down to a minor ache in there if I take a deep breath, which if I didn't know what it was, wouldn't be causing me much concern. I may sing a different tune in a few weeks, and early summer is likely to be the worst, but only time will tell.

Emotionally I'm over the scared stage, the only difficult part is having to tell someone and seeing their reaction (that's very emotional). But for myself, oh well, lets get 'er done!

Be well, everybody!

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #162718 03-12-2013 06:06 AM
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Seth, Im very sorry you are going thru this!!! Its bad enough doing it once but twice is just horrible!

Do your best to think positive and stay busy to keep your mind from worrying too much. At least you already know the medical jargon and all that goes along with being a cancer patient. Its much easier getting thru this again when you already have your medical team in place.

Best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Stily1 #162723 03-12-2013 06:30 AM
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HI, Seth,

I wish you the best with your treatment. You have a great attitude [quote][/quote]But for myself, oh well, lets get 'er done!
[quote][/quote]

Your post illustrates the importance of when in doubt, check it out. Good thing you are so proactive in your own healthcare. Hang in there!

Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
Stily1 #162728 03-12-2013 07:40 AM
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Hugs - and so sorry - so glad they have a plan in place. Fingers crossed and prayers being said.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #162731 03-12-2013 09:05 AM
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Thanks guys n gals. I'm feeling good. No dread. No fear. Maybe I'm a fool, but I'll take it while it lasts!


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #162733 03-12-2013 09:14 AM
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Amazing!! I know you are having a hard time considering yourself "lucky" but it sounds like this was caught at a very early stage. I have a friend who had a very similar story to yours - sore muscle, etc - got a chest xray and they found cancer. He is doing great now - and that was many years ago. I realize that is not the same as your situation - metasisis vs new cancer - but I am praying for similar outcomes.

Forget statistics. They don't count as the only statistic that matters is what happens to YOU.

Keep us posted on how this is going.

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Stily1 #162748 03-12-2013 02:32 PM
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Hope all goes well and best wishes for a speedy recovery!!Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
Stily1 #162761 03-12-2013 09:35 PM
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Love your attitude! Best of luck and keep us updated.


Do not go gentle into that good night. Rage, rage against the dying of the light.

31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
Cherri79 #162827 03-14-2013 11:32 AM
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Seth

Damn, yet another member of the Damn, I've got cancer again club.
It's not fair that you have to deal with this, but it's clear you will. You have beat cancer before and you will do it again
Keep the Faith
Charm

Last edited by Charm2017; 03-14-2013 11:34 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Stily1 #162834 03-14-2013 01:09 PM
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Thanks everybody. I'm nearing the end of day two of round one. Cisplatin the first evening followed by now most of a 24-hour bag of 5FU. Nice room, good food, can't complain. Had a bit of nausea in the morning, quickly and effectively medicated away. I could say I feel as if I have a slight hangover, maybe. No other side effects to speak of (yet).

So! Not so bad so far.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #162879 03-16-2013 12:39 AM
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Start of day 4 of 5 of my first chemo drip in hospital. Going mostly ok. This morning tummy feels 'fragile' but stable, no more 'mild hangover' feeling, no more acid reflux. Hoping yesterday was the worst of the Cisplatin side-effects (administered first night). Slept well. 36 more hours of the 5FU drip and then I go home.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #162896 03-16-2013 11:09 AM
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I am surprised you are in the hospital to get the 5FU drip. I am doing induction TPF and get fitted with a mobile drip infuser and it just sits inside a small pack I put around my waste. I am sure it is far less expensive this way as well as I have full freedom of movement. Does not necessarily do much to alter the side effects though. LOL


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Stily1 #162899 03-16-2013 11:42 AM
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I've heard that from a few angles, Donfoo. It may be down to the gold-plated private medical insurance I enjoy through my wife's work, or it may be out of caution because I reacted badly to *something* at the end of my first cancer treatment three years ago. In any case, evidence suggests that people do better when they are in hospital, as the professionals can deal quickly with anything that comes up. Although being tethered to this damned pump stand is not ideal.

Evening of day 4 of 5, things seem to be settling down, so primary side effects seem to have been from the Cisplatin and peaked yesterday (note that by Donfoo's model, I would have been home for that).

ONWARD THROUGH THE FOG! And I don't mean the chemo fog. Hoping to avoid that.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
donfoo #162901 03-16-2013 11:47 AM
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It may depend on the hospital. When I had induction chemo, in 2009, I was in the hospital 5 days. I know if someone now having IC in Hawaii, 3 cycles, and is doing it in the hospital also. There are probably pros and cons with both. One concern for in hospital, I think, is risk of hospital acquired infections.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #163134 03-23-2013 10:58 PM
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Update. Just shy of one week from end of chemo round 1 and I feel better than I expected to. It was far from pleasant, but at its worst on Friday, 15 March amounted to nausea (quickly medicated), low grade 'hangover', and heartburn. I completed round one on Sunday night, and by Thursday evening felt almost normal. My digestion is 'slow' so I need to avoid large meals, but I can taste and enjoy food, and I returned to work late last week.

The debate of in-hospital vs. go home for chemo drip, debate, has some interesting angles. Depending on one's insurance, there could be a clear cost implication, but that (so far) is not a worry in my case. Regarding hospital acquired infection, yes, fair point, but would you rather be in a hospital where they can immediately put you on IV antibiotics if needed, or home, where you'd have to slam yourself back into hospital in crisis mode, to get on the same IV antibiotics? Of course, the lowest immune system point was probably yesterday anyway, when I'm home.

So far so good. Three more to go.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #163141 03-24-2013 04:28 AM
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Seth, hang in there! It sounds like you are doing much better than expected with this second round. I know its not easy but keep doing what you are doing as it seems to be working.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Stily1 #163484 04-01-2013 05:13 AM
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Thank you Christine and everybody.

In fact by now, two weeks post chemo, I feel quite good and we even got away for two nights in the Cotswolds Area of Outstanding Natural Beauty, to a lovely B&B in Slad.

I go back in for chemo round 2 on Thursday. Oh well, the alternative is not acceptable, so bring it on.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #164265 04-23-2013 12:50 PM
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I'm now two weeks post second chemo and again, doing quite well. Eating pretty much what I want, back to work, back to bicycling to work, back to the gym (gently). I'll risk it and say that this treatment (if it's working) is much easier than my original tonsil SCC treatment was.

I should learn the results of last week's CT scan Thursday night. Hoping it will confirm that this is working!

The one more round of chemo starting Friday afternoon for 5 days.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #164269 04-23-2013 02:04 PM
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Seth, you are doing great!!!! Wow, I am impressed at how well you are handling everything. You must be doing great with your nutrition to be holding up so well. Keep up the great work!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Stily1 #164275 04-23-2013 07:37 PM
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Hi Christine, I think for me, in this treatment, for one it's just much less harsh, only being chemo, no radiation so far (that will come later, but will be to my chest, not my head/neck) but it's been being active that has helped the most. Walking, and now bicycling and even lifting, though reduced weight. The chemo principally effects my digestion, and the anti-nausea medications likely don't help that, either, and I've found that being physically active helps my body, well, get things moving again, and probably repair itself, too, since exercise triggers repair (sore muscles). The body works best when it......works. Within reason, of course. As we know, every body, and every chemo, are different.

Amazing orange moon setting this morning here in London.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #164279 04-23-2013 10:17 PM
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Hi Seth, glad to hear all is going well and you are feeling pretty good.
Fingers crossed for you on Thursday and hoping for great results.
Take care, Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Stily1 #164294 04-24-2013 08:26 AM
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So glad to hear you are doing well keep us apprised of what is happening we are here for you... best of luck and continue to feel good! ;o)


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #164364 04-26-2013 07:48 PM
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Hello, Seth.

I am just catching this thread and all sounds very well and hopeful for a cure!

After reading your story, it makes me wonder if my second cancer was indeed metastatic and not a new primary. I, too, do not fit into any statistical/prognostic category, so the same goes for me with careful watching.

I have been selected to participate in a study for rare cancers at Mass General. I'm definitely doing it! Anything to help find new treatments and move toward a cure of this disease!

Best wishes for your continued good results. I hope that your scan shows that the treatment is working and that the follow up radiation will take care of the rest. Let's be done with it once and for all!

Be well,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Stily1 #164366 04-26-2013 08:35 PM
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Hi, glad to see you posting again. I can't believe how when I was gone on the 2 vacations I come back and there are so many new members with cancer.

I see you mentioned having problems with breathing during treatment. Did they ever check you for sleep apnea. I know Jeff's came on as a result of the swelling and even though the swelling is gone he still sleeps with the cervical collar around his neck and eventually puts the CPAP machine on. At least now he often waits so we can at least cuddle for awhile till I usually wake him up and tell him he's not breathing at put the machine on. I really resented the machine in the beginning, it totally ruined going to bed together at night. Do you ever feel like you are not breathing exactly right even now?

I see you are in a study for rare cancer. What type do you have that is rare. Jeff's is so rare less than 50 cases. I called out to Sloan Kettering in NY this week just trying to get some info on Jeff's cancer since I know they have treated 2 people with it that didn't make it. Was wondering about the chemo after rads to help reoccurrence.

Today it actually was in the 60's, we had a low of 10 this week and still have lots of snow. 70 for tomorrow so hopefully more melts. I see we had a drift 2 feet deep on the side of the garage still. Such a crazy spring, I want summer and am anxious to get my garden in.

How are you really feeling? Did this second time kick you more? Hope all continues to improve, you are so young to be dealing with it. Take care. Terri


Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
Stily1 #164367 04-26-2013 10:30 PM
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Hello! My CT scan showed strong good effect, significant shrinkage of my tumour in the inside edge of my left lung, and no other tumours visible. My Oncologist is very pleased with this result and confirmed treatment 'Plan A' of a third chemo, followed by radiation to stamp it out.

In fact I'm in my hospital room at the Royal Marsden having had my dose of Cisplatin last night and they've now just started the 5FU which will be administered for four days constant slow drip.

Kerri, in my case they were able to test a sample of my new tumour and confirm it's the same cancer having re-appeared in a new place. They took a needle biopsy through my ribs and lung - that was a new experience! But not terrible.

Terrib, I think you may have confused me for someone else? In fact my cancer is bog standard metastatic recurrence of the Squamous Cell Carcinoma I had in my tonsil, I had a psychotic reaction to something at the end of my treatment, could not swallow, but don't recall trouble breathing. And I'm not part of any trials or study; just going through the standard treatment for this, granted rare, metastatic recurrence. Of course they'll learn something, but my path at this point is not too esoteric.

So far this morning I feel pretty ok. I expect this to change as these drugs do their work with the unfortunate collateral damage, but oh well!

Cheers,

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #164378 04-27-2013 06:36 AM
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That is soo awesome prayers, and fingers crossed for you. Keep on trucking.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #164386 04-27-2013 02:22 PM
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Well, that's very good news. You seem to be holding up well too.
It's all about moving forward with treatments. Coping the best we can. Getting that good outcome/response.
Thinking of you and looking forward to your updates.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Stily1 #164392 04-28-2013 02:45 AM
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36 hours post Cisplatin, seems maybe the worst of those side effects are past? Cautiously feeling like this third and, hopefully final, round of chemo is going better than the prior two. Might be too early to say that, as they warned me some side effects may be instead cumulative. Only time will tell. But as of this Sunday morning I've managed a light breakfast of toast, tea and cereal and feel 'ok'. No return of heartburn yet, touch of nausea yesterday afternoon quickly medicated.

Then, in three weeks I'll start 4 or 6 weeks of radiation treatments.

On ward through the fog!


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #164398 04-28-2013 11:49 AM
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Great attitude Seth! Prayers and Best Wishes for you. Eager to hear of continued improvement!


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

Stily1 #164404 04-28-2013 08:42 PM
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Thanks Steve and everybody. I'm about half way through what should be my last chemo and am at the 'dodgy tummy stage'. Not quite nausea, no heartburn at this point, just low-grade belly ache that doesn't leave me wanting to do much other than try to sleep, which of course I can only do so long. Unpleasant, but no drama.

I should be done by early Wednesday morning (London time). I keep reminding myself that within a few days of getting off the drip each time so far I've felt better than I thought I would.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #165865 06-02-2013 10:28 PM
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Hi everybody. Just checking in. I'm half-way done my post-chemo radiotherapy treatments and so far am having little if any side-effects! Ironically my head hair is thinning now, which is a late-onset side effect of the chemo, but so far it looks 'ok'. If it thins too much more I may just shave my head, which I've always wanted to try anyway but have never been brave enough. At least, this is what I'm telling myself!

Still working, resumed bicycle commuting last week. Can tell I've been off the bike for a month, but otherwise that goes well, and now that Spring has finally (finally!) appeared in London, it's far preferred to the Tube and bus network.

Met with my Oncologist last week so my parents could meet him, and he said he was 'extremely' happy with how my tumour has responded to the chemo, and clarified that the tumour is not in the airways part of my lung at all, but instead is next to the lung and had pressed the lung over, but the lung will expand like a balloon back into that space as the tumour shrinks. This had not been quite clear to me until he described it to my parents. I may have some collateral irritation in my lung where by necessity the radiation passes in/out, but this should heal up. They are hitting me from three angles to minimise the collateral damage, of course.

Cheers,

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #165906 06-03-2013 03:26 PM
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Seth,
Finally saw this. I've been following you on another site but didn't pick this up. My thoughts and prayers are with you.
All the best,
Rob


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
Stily1 #165947 06-04-2013 08:45 AM
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Stay strong!!! ;o)


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #166105 06-06-2013 06:08 AM
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Hi Seth--I may be double emailing you--still getting used to this site. Apologize if I am. It seems your case is so much like my husband's (right down to the silver lining of never having had the nerve-- but always wanting to-- shave his head). I am glad to hear your treatments are progressing. Is the radiation the same type that was used on your initial go-around? Or is it the more directed (cyberknife?) type? We are new to the discovery of the metastasis to the lung's hilar lymph node. And still reeling. Met is still small, so docs advise waiting for it to progress to "measurable" disease before treating it. Getting second opinions shortly. Thank you for sharing your experience on this site. It's great to know you're riding your bike again (in London traffic??!!). Finally, thanks to your forebears for the phrase Keep Calm and Carry On. I have it posted in several prominent places in my life.

Best,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Mary40000 #167227 06-28-2013 08:36 PM
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Hi Mary,
I'm not a doctor but waiting for cancer to grow bigger before treating it, goes against everything I have heard of. Please get another opinion ASAP!!
Good luck.



Amber
Caregiver to 63 yr HPV+, BOT SCC, T2-3N2cM0,
Dx 9/6/12, Tx 10/12- 12/12,
Cisplatin x3, 35 x IMRT;
PET 12/15/12 Clean
PET 3/14/13 Clean
PET 9/17/13 removal of lymph node mediastinum bx HPV+,
10/13/13 SBRT 5x area around node
PET 1/6/14 -clean
CT 6/14 -suspicious
CT 11/14 - 5 spots confirmed
12/14- chemo
CT 1/15 -stable
CT 3/15 -chemo ended; mixed results. Some spots better but new one appeared also in left pleura
Stily1 #167499 07-06-2013 01:28 AM
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Hi everybody,

I'm doing generally quite well now, three weeks post final radiation treatment. I *have* developed a pain in my chest, sort of under the tips of my ribs on the treatment side, which spikes when I take a deep breath or squeeze all the air *out* of my lungs, but my Oncologist isn't too concerned, says this could be any sort of post radiation irritation, and my own research online points to similar possible side-effects up to 6 months following radiation. So far it's only a problem while I'm bicycle commuting, when I would normally take deeper breaths.

But, I'm back to work full time and back to eating whatever I fancy. In fact, it's surprising to me that it's only been three weeks since my last radiotherapy treatment. I need to occasionally remind myself what I've been through, and that I'm almost certainly still recovering.

Summer has finally come to London, and it's now time to go for a walk along the Thames with my wife.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #167503 07-06-2013 04:10 AM
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Congrats on finishing round 2! It sounds like you are doing fantastic, working, biking to work and taking walks with your wife. Hope the chest pain goes away quickly. Best wishes with your continued recovery!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Stily1 #167507 07-06-2013 05:32 AM
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Congratulations on completion. I had similar occasional chest/ lung pains on my surgical side for a while. I had a clear PET scan, x-rays, CT in other follow ups, not related, and were clear too, and pain eventually went away. I thought it was from surgery, anesthesia. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #167511 07-06-2013 12:01 PM
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You don't mention the recent radiation in your Signature Line?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Stily1 #167513 07-06-2013 01:35 PM
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Wow! You have rocked this thing all along! I cannot say that I have ever seen someone do so well throughout treatment! I am completely amazed and so happy for you!

I think a walk with your love along the Thames is long overdue <3.

Enjoy your summer!

Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Stily1 #167527 07-06-2013 10:18 PM
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Thanks folks. Yes, compared to my primary treatment in 2010 this one has been a breeze, probably due to;

1) different treatment, this recent one being primarily chemo with radiation polish rather than the other way around,
2) the chest location vs. the tonsil/throat location of the first one (less sensitive area)
3) related to both 1&2, no need for 'heavy' morphine-like pain medications which may have sent me 'round the bend last time

David, good catch, I'm updated my sig line (limited characters allowed).

Nothing to be done now until late August when I'll get the results of a PET CT scan to check for any residual 'active' cancer, which would be a very bad result as they will not radiate this area any more (they've thrown the book at this one).


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #167546 07-07-2013 05:56 AM
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Hugs and blessings to you!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #167561 07-07-2013 01:43 PM
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Seth-
SO great to hear you are doing so well after the treatment!

Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #170098 08-29-2013 08:34 PM
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Very good news! I had the results of my first follow-up PET-CT, following my treatment for my metastatic recurrence in my chest, and my Oncologist told us that the result 'could not be better'. No sign of any active disease at all.

There was evidence of some scarring and residual irritation from radiation, but this is not a surprise. I do still have some of what we're calling 'pleurisy' - chest pain on deep breath, but this moderated two weeks ago and is not on the minor side of moderate, and knowing that it's 'only' pleurisy means I'm okay with that!

I'll have my first follow-up scan in three months. Then, barring trouble, another in 6 months after that.

Yay!

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #170102 08-29-2013 08:41 PM
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congrats seth! one more hurdle cleared well. Praying for continued success.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Stily1 #170103 08-29-2013 08:45 PM
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Seth, congrats on the excellent check up!!!! Its great to see you doing so well.

Thanks for checking back to let us know how you were doing. You have gone thru alot and Im sure it was not easy for you. Best wishes with your continued recovery.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Congratulations on NED!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #170118 08-30-2013 04:56 AM
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Fabulous!!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Stily1 #170132 08-30-2013 07:21 AM
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Hi Seth, just catching up with your story and want to say Congratulations on the happy ending to this latest chapter!

Mama


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Stily1 #170135 08-30-2013 08:13 AM
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So,awesome! You're superman!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #170143 08-30-2013 09:10 AM
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Seth,
Smiles all around! I am so ecstatic to hear such wonderful news! I had a great check up today, too! Let's celebrate our health!
xoxo,
Kerri

Last edited by Kerri; 08-30-2013 09:10 AM.

37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Stily1 #170209 08-31-2013 12:11 PM
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Seth,
That is such wonderful news! Thanks so much for the update!
Best,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #174677 11-30-2013 02:55 AM
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Firstly, I wish to apologise for only coming here when *I* have news. I will try to be a better participant going forward.

Unfortunately, after having had very good results at my 3-month follow-up PET-CT scan (nothing to see here, move along) I've had a dramatically different result at my 6-month PET-CT, in that it appears my SCC has come roaring back and spread around my left lung within my pleura, and with one additional spot down probably on my bowel.

Oops.

I feel quite well, aside from some nagging minor 'pleurisy' and a touch of 'asthma', alas, not so much.

Learned all of this last week Thursday night. Yesterday I met with the Drug Development Unit at the Royal Marsden Hospital in Sutton, Surrey, and while it's not finally confirmed, they feel I'm a very strong candidate for a 'promising' new 'targeted' anti-cancer drug by Genentech that's under Stage 1 trials. It's just called GDC - 0980, and it targets a certain 'pathway' in the cancer's mechanism, rather than just shotgun poisoning any and all quick-dividing cells, as traditional chemo does. This means that the side effects should be much less, although of course, it's experimental, so anything could happen.

Presuming this goes ahead, my trial would start in early January.

Onward through the fog!

Hugs to everybody.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #174681 11-30-2013 06:42 AM
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Hello Seth:
I'm 2 months new to the forum family and brand new to your thread. Since I'm just barely halfway through radiation therapy I'm only just beginning to be able to look down the road to post treatment or heaven forbid recurrence.

I suppose what I am most interested in is how people emotionally handle recurrence. If others are like me this first round of battle with the demon hasn't taken too much of a toll on my psyche, I've been able to stay upbeat and positive throughout it pretty easily.

So, when I came across your thread Round Two it definitely got my attention, kind of an exactly what I was looking for kind of moment. And I wasn't disappointed, you have been able to maintain a tremendous positive attitude throughout the battle and better yet a desire to share it with others.

I wish I had enough knowledge of this demon to give you a valuable tip that would make your life easier, but I don't. What I do have is an appreciation for the strength that you've show throughout this battle. You have made it much easier for me to envision being equally strong should recurrence happen to me.

Good luck with the rest of your journey, I will be keeping an eye open for your thread.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Stily1 #174687 11-30-2013 08:39 AM
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Stilty - yeah!!!!!!! On the trial drug hoping very much that it gets all of it. Are they sure the bowel is mets and not something else? Hugs you are a powerhouse


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #174697 11-30-2013 01:35 PM
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Seth, thanks for checking in. So sorry to hear about your recurrence. Thats great news about the trial. Hope it works and can get rid of the cancer forever.

Good luck!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Stily1 #174705 12-01-2013 12:24 AM
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Thanks guys & gals. Tony, I PM'd you. Cheryld, I've not heard more about their thoughts on the spot down low that may be on my bowel. I have no reason to expect it's not the same thing. I suppose I should ask about that! Frankly, I hope it is the same thing, because that would mean this targeted new drug would be effective against it!

I'll try to get more info and report back.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #174707 12-01-2013 09:19 AM
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Here's a link to the drug trial I hope to bet in to:

http://clinicaltrials.gov/show/NCT00854152

This may be very interesting to many of you.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #174709 12-01-2013 09:59 AM
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Stilty -colon cancer is treatable if caught early - also it may not we've be a cancer. I would be hoping the opposite - that it's not OC mets - I would be hoping it's something that can be removed with a bowel resection. Then you'd be clear. And hopefully this drug works everywhere. smile hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #174714 12-01-2013 10:29 AM
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Did they ever do any biopsies for the latest recurrence? Any chance of resection, Vats, Cyberknife, other radiation. Hoping all the best for you. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #174723 12-01-2013 06:55 PM
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Hi Seth...crap....I am sorry to hear about this recurrence. Thank you for posting the link to the drug trial; glad to see it's being tried in UK and hoping that you get in. I am wishing for all the best for you and your family. Please keep us posted.

Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #174726 12-01-2013 09:01 PM
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Hello, Seth.

I am so very sorry to hear this bad news. It was a big, happy "Wow!" after your first PET, and now this. This disease is incredible at times and just leaves you saying "how can this happen in such a short period of time?".

I am so happy and have good thoughts about this drug trial. Here's to hoping that it leads to a cure for you and many more to come!

I wish you all the luck the world has to offer and the very best medical care.

Blessings to you and your family. I hope to hear good news from you very soon.

Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Stily1 #174729 12-01-2013 10:18 PM
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Hi guys,

To the several questions; no confirmatory biopsies yet, I have a question out to my Oncologist as to the latest thoughts on the one spot on my bowel (as opposed to the numerous spots around my left pleura). To my understanding I've had my lifetime dose of radiation; no more rads for me, at least not in this area.

One interesting twist to all of this is that in order to participate in the trial it must be handled as an NHS (National Health Service - UK public health program) case (I've so far had my treatments under private insurance) so administratively there is a change (although my oncologist will continue to follow me, and is happy to meet as and when), and under the trial I will have a 'tumour' person among many others. At this point they are trying to determine if the biopsy that was collected earlier this year of the single tumour between my left lung and aorta will suffice for 'typing' as well as they will map the genetic blah blah blah as part of this study. I figure if there is any doubt, or if that sample is inadequate, they'll be taking more, and of course I'm fine with this. I do want them to be as certain as possible that this 'targeted' therapy is aimed at the correct target!

Early days as we say over here. All of this (learning I'm a likely candidate for the trial) happened just this past Friday, it's now Monday morning. The Season has begun, multiple holiday lunches and parties this week already, and all the while trying to work and waiting for my phone to ring with some or other instruction from the medicos. Never a dull moment around here!

Cheers,

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #174736 12-02-2013 04:29 AM
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In my travels, I have had the privileged to have met 3 OC patients who have all gone thru rads 3 times. The docs tell us all with only one round of rads we have had our lifetime max. With enough time between recurrences and slightly different locations of the recurring tumors, my 3 friends have done rads 3 times all being treated at CCCs. Just an example of how individual each patient really is, 3 rounds of rads has been done in certain cases here in the US. My intent is not to second guess your doctors, as I do see in your signature you have done rads twice. Its simply to let you know 3 times has been done before to a few patients that I know both from the OCF forum and in person. Here in the US there is also cyberknife, brachytherapy, tomotherapy and the davinci robot as other tools in some locations. Your study sounds very promising, I hope it works! Thank you for being willing to give it a try, this helps all future OC patients in finding another method of treating this awful beast.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Stily1 #174745 12-02-2013 11:04 AM
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I had radiation 4 times to the same area, 2 Times IMRT at 70Gy, 50Gy, and 2 times HD-IORT, at 12Gy, and 10Gy, which is equivalent to 3-4x that amount in IMRT dosage, and going for my 5th radiation treatmeng with Proton Therapy with 50Gy in a few weeks, to the same area.

Good luck.



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #174777 12-02-2013 10:44 PM
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Hi everybody.

Okay okay, I get it, never say never to more radiation. In my case, here in the UK, they don't want to consider more rads for me, that's all. My oncologist prefers the option to get me into the trial of GDC-0980.

I've not yet heard more about that. Will let you know as and when. Otherwise doing well. Dull ache on 'that side' but that's nothing new. This week is rather full of Holiday lunches and parties and such, so that's nice.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #174784 12-03-2013 04:40 AM
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Enjoy those holiday lunches and gatherings, Seth! Wishing you all the best.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Stily1 #174794 12-03-2013 07:17 AM
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Yes... I agree. Enjoy the holidays and definitely do give the trial a big go.

Rads is funny I think it is a social medicine situation. They are more cautions in Canada too. In the states it seems they will fry you until you are well done and then bring out the flame thrower for more...

whatever works I say.
hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #174831 12-04-2013 05:02 AM
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Hi
I agree enjoy the parties etc and get through the trial. I'm in uk also but my treatment was at charring cross with mr Clarke. Good luck and hang tough you will get there Seth big hugs
Jayne x


Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator

Age 45
Stily1 #176229 01-08-2014 06:51 AM
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Once again I've been absent. Last hurdle to my trial participation is a colonoscopy tomorrow morning to investigate one unexplained PET 'hot spot' down low on the right. If that turns out to be a new different cancer it could mean the trial is not for me. It could also turn out to be nothing, or my same SCC having gone to an unusual place. All other tests have gone well and nothing identified to keep me out of the trial.

The Holiday Season has been good; an early week in Canada to visit the in-laws and other family and friends, then Christmas back local to London.

Today I met with a local Hospice on the advice of my GP, I gather that hospice is not only for when you're making your exit; they also support people in many other contexts. It was an amazing facility and service, and is about two miles from home.

Jayne, was your doctor Mr. Peter Clarke? Tall, dark hair? If so, he did my neck surgery when I first came to London, but this was at the Royal Marsden in Chelsea. At first my monitoring was shared between Mr Clarke and Proff Harrington, but when my cancer returned Kevin Harrington took over for my further treatment.

Cheers,

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #176235 01-08-2014 08:46 AM
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So glad you had a good holiday... hopefully the colon issue is nothing... maybe an ulceration or something equally as unimportant.

With regards to your lung mets. Are you sure - have they biopsied one of the spots?

another of our members here had a scare a bit ago with something similar - she had lung spots for a bit and they were certain it was mets - (she still smokes) - they were saying the mets were too small to biopsy and she decided to forgo the chemo offered, so they decided to monitor her instead.

A few check ups later - her spots are resolving. It's important to know for sure if it is cancer.

If it is best of luck with the trial and hope you get in.

hugs

Last edited by Cheryld; 01-08-2014 08:47 AM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #176245 01-08-2014 12:51 PM
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Hi Cheryl,

They've not biopsied it yet, but will on the day I start the trial, so worst case if it was miraculously not cancer I would only have had one dose of the drug before this would be known.

But I'm not *that* optimistic! My PET scan was, shall we say, fairly dramatic, showing dark 'sugar uptake' in about ten areas around the *outside* of my left lung, in the pleural lining. And I do have some pain that fits the notion of something bad going on in there, although this is minor at this point. They can't think what else it could possibly be. That said, it's not changed much in the subsequent 6 weeks (baseline PET scan for the trial) which is also a bit of a surprise (in a good way, I think).

All will become clear in time.

Or not.

But hey.

Thank you for sharing the other friend's story - very interesting.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #176261 01-08-2014 05:43 PM
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Hi Seth-
Best of luck with the colonoscopy (there's a sentence that I don't believe I have ever written before). I hope you get some pleasant sleepy gas for that. (my husband was quite amusing upon awakening from the bronchoscope Monday; kept asking if we were in Chicago which made me at least remind him that we need to make a trip there, preferably in the spring).

All my fingers are crossed for clear sailing after tomorrow and into that trial. Thank you so much for updating us. I know there are many, many here rooting for you--on all sides of the various *ponds* (asterisks versus " " are in your honor as that is how your posts appear)

Best,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #176898 01-25-2014 01:25 AM
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Ok! Time for an update.

The colonoscopy went fine (that was interesting......), they found a small 12mm nodule in an odd location and it didn't look like 'normal' colon cancer, they took a biopsy, and confirmed that it is the same SCC that I have had all along. This is a somewhat surprising result (to see a head/neck cancer appear in this location), but there you have it. This could be easily removed by 'keyhole surgery' but for now they've chosen to hold that option in reserve.

The good news is this didn't kick me out of the trial, and I started GDC-0980 on 15 January with a single dose and lots of monitoring and tests, this went fine, and then a week later, on 22 January I started taking it daily.

So far so good! I've had no side-effects to note (other than feeling hungry due to the fasting requirements; one hour before and two hours after each dose).

Maybe a slight twinge of nausea, but not even sure about that, and this could be simply the fasting.

Time will tell if side effects come on, and if this drug helps me, but so far so good!

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #176901 01-25-2014 04:23 AM
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Thanks for sharing Seth, and showing a connection between the two areas, which was thought possible, but not sure if I ever read such a case, and changes my thoughts about getting a colonoscopy. Good luck with the rest of the trial, and keep us updated.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #176906 01-25-2014 06:27 AM
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After-my-husband-was-diagnosed-with-cancer-of-the-vocal-cord-the-team-decided-on-a-colonoscopy-and-upper-GI.Since-he-never-smoked-or-drank-and-is-non-HPV-they-wondered-if-it-had-originated-somewhere-else.Thankfully-no,he-just-was-the-lucky-one-to-have-a-rare-cancer-with-less-than-50-cases-ever-in-the-world.


Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
Stily1 #176914 01-25-2014 09:23 AM
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Good luck Seth... Did they delay the colon decision so they could start you on the chemo?


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #176918 01-25-2014 11:20 AM
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Hi Cheryl,

That's a fair question. I figure, if I have SCC throughout the pleural lining all around my left lung, then what's the rush in surgically removing one tiny nodule of SCC in my colon? Remember, it's not 'colon cancer' so any SOP likely doesn't apply. So in a sense, yes, I figure they didn't want to delay my start of the trial by doing a surgery, or perhaps they just don't see any advantage to performing a surgery at this time (which I think is more likely the reality).

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
terrib #176920 01-25-2014 04:49 PM
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Terrib,
I also was diagnosed with SCC of vocal cord with NO risks either, HPV-, they could only come up with reflux being the cause? Wonder if your husband had an issue with reflux. Don't want to hijack the thread but really curious if he did. Mine was Stage T1N0M0 for which I'm thankful, will be going on 2 years, so holding my breath as we all do! Sorry for the intrusion!
Mrs. Sarge

Stily1 #176936 01-26-2014 07:13 AM
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My father in law is a wine drinker, and has had acid reflux for years.... Dx'd this fall with esophageal cancer - the three precursors for esophageal cancer - alcohol consumption - (wine is a staple as he's italian and it is lifestyle - he's not a roaring drunk, he had likely half a litre to a litre daily over lunch and dinner and was perfectly sober) - (check!) a history of acid reflux (check!)- and often older black males - (he's older and male but not black) acid reflux depending on the length of time you've had it can definitely cause chronic irritation and cell change.

Hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #176997 01-27-2014 06:48 PM
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Seth-
So glad you are able to move forward with the trial, and that it is not giving you a lot of unpleasant side effects. Thank you for keeping us posted. Hope all continues to go well.

Best,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #177010 01-28-2014 08:15 AM
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HuGS!!!!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #177270 02-05-2014 03:31 AM
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Time for another update from London! Doing well on GDC-0980 Day 21 of Cycle 1, Dose 16. So far no side effects to speak of. Maybe a bit of heartburn if I eat a large meal, but that may just be my poor choices. Might have had a touch of the runs a while back, but this has settled without treatment. Hardest part is the fasting.

Today I'll be in the hospital all day as this afternoon I also get a PET scan. This scan is for the trial and is not 'diagnostic' for me, but they've just agreed that the radiologist will discuss the results with me anyway.

All other indications are good, blood levels of everything 'normal', physicals look good, basically nothing is going sideways.

My cancer symptoms seem stable to me, so can't say I feel marked improvement yet (this would be early days anyway) but I can also say I don't feel worse. I'm still working and still cycling to work.

I got up at 4 this morning so I could have breakfast and coffee before starting my fast at 5. Because of the PET scan I will end up fasting through probably 3 in the afternoon. Right now it's just after 11 a.m. and I'm hungry and getting a mild headache, but that's all down to the fasting and nothing else.

In another week I get a CT scan which they will use to try to decide if this is working or not.

Cheers,

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #177272 02-05-2014 04:30 AM
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Keep up the good work, Seth!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #177273 02-05-2014 06:13 AM
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Here's to hoping the drug does what it is supposed to.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #177279 02-05-2014 07:37 AM
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Ditto... hopefully it is kicking up a storm... hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #177282 02-05-2014 08:50 AM
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Everything seems to be going well, Seth. I hope for the best possible results, as always. Thank you for the updates!


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Stily1 #177310 02-06-2014 01:01 AM
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So! The Radiologist was happy to sit down with me, explain the limitations of the day's image (a fairly raw PET scan intended to be used to evaluate if that tool can be used as any sort of 'early indicator' of drug efficacy), and described and showed me that, within the limitations of the image, nothing much has changed. The good news is, it's not spread or grown. In fact, one small area of fluid accumulation from the last scan (that I hadn't known about) has dissapeared. But, no aparrent shrinkage yet. But again, they wouldn't normally be checking for efficacy yet. That comes next week with a CT scan with the contrast die, which will be much more useful for making measurements and comparisions. So, no change, which fits wiht how I feel; stable.

I'll take it!

Cheers,

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #177324 02-06-2014 03:00 PM
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Seth--
Great news. Stable is good!

Best,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #177356 02-07-2014 02:15 PM
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No news is good news..
And every little step forward (your fluid resolving itself) is a triumph... smile hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #177502 02-13-2014 10:05 PM
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Some good news! Based on preliminary observations and a 30-second phone call with the radiologist, she said she sees a 'slight' 5-10% tumour shrinkage in my latest CT scan. I'll take that!

I've not yet heard any more-formal comment from any of the research team, but may ask for this today.

GDC-0980 appears to be working for me, and with very minor, if any, side effects!

Will of course keep you posted.

Happy Valentines Day everybody!

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #177503 02-13-2014 10:52 PM
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Yeah!!!!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Fantastic!!!


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #177525 02-15-2014 09:19 AM
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Such great news, Seth!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #177529 02-15-2014 10:24 AM
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Excellent!


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Stily1 #178041 03-07-2014 11:57 PM
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Update! 8 March 2014. So, those keeping score will know I had a PET scan last Wednesday and will know that the PET scans are used for the drug trial and are not intended to be 'diagnostic' for me (not intended to measure progress or effectiveness of the trial drug, per se). However, the medical staff have been very cool and willing to share with me their observations of these 'other' tests and I had a call from the Lead Fellow yesterday to tell me that, being careful to point out that they were comparing 'PET scan to PET scan' (because to try to compare a PET scan to a CT scan would be pointless as they reveal very different things) they feel I continue to be 'stable', meaning nothing has changed much since the prior PET scan; no return of the pleural effusion (water pocket) that was visible before I started the trial drug but has gone away since, and no new cancer lesions, but at the same time, no notable decrease, either. All along it has been true that one possible 'good' outcome of this drug might be simply that it arrested the progression of my cancer. In any case, I'll take 'stable' over many other possibilities!

I've had a return of some pleural pain this past week, but this now seems to have been caused my the wrong kind of physical activity and is settling down. While annoying, it's not unprecedented, and it's tolerable, and does respond to ibuprofen.

I will have a contrast-enhanced CT scan next week Wednesday and that is intended to be diagnostic, where they will actually try to measure the sizes of tumours etc. and get a quantifiable sense of changes.

ONWARD THROUGH THE FOG!


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #178046 03-08-2014 04:44 AM
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Thanks for the update! Glad to hear things are going so well. Thank you for sharing the trial info.

Best wishes with everything you are going thru. Hope your scan next week turns out with good news.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Stily1 #178050 03-08-2014 08:21 AM
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Hi Seth! it's good to be stable. That is what I tell people when they ask me how John is doing.

John occasionally has pleural pain too. There is one lesion in his pleura. But since he is a potter, it can also be caused by his poor posture when potting. It is really hard to tease out. In any case, he does back exercises given to him by the physiotherapist and takes a couple of Tylenol when it is bad. Like you, so far it seems to work.

He is going in for his fourth dose next week. That will be followed by CT scan the next day and a lung biopsy at the end of the week.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #178055 03-08-2014 10:58 AM
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Hi Seth, thanks for the update.I await the outcome of your scans as I would my own. Live long and prosper buddy.


discovered a golf ball in my neck St.Paddy's day 2010.
Dx stage 4a left tonsil ca may 2010 at 50
non smoker, moderate beer drinker
HPV-16 pos.
tosillectomy
9 weeks Cisplatin
35 rads
nov.2010 PET NED
2011 2x PET NED
2012 2x PET Ned
3/13 Pet NED
SEptember 2013 Pet uh-OH.questionable and anxious
follow up pet, yup, its back.
mets to sub clavivular and mediasteinum nodes
biopsy positive scc.
trying to figure out next step
my imaginary friends think I am crazy.
Stily1 #178066 03-08-2014 07:18 PM
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Seth-
Thanks for the update! Great news. I love "stable". Hang in there and keep us posted.

Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #178098 03-09-2014 10:07 PM
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Stable is awesome!!!! smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #178377 03-16-2014 12:19 PM
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Hi everybody, the news from my CT scan last Wednesday is pretty good. The radiologist told me that she sees no progression, and slight (5%) shrinkage in a few spots, of my 'solid tumours'.

Yay!

The slight fly in the ointment is that they can see fluid accumulation that is new and they can't really explain, but is probably an inflammatory reaction by my body to, well, cancer perhaps? This does explain the return of some pleural pain for the past two weeks or so, which I think is getting better now.

This was all based on a very quick meeting with the radiologist on last Wednesday afternoon and is not the 'official' word from the team, but she assured me it would be the same outcome.

She said as good results go she gives this a 7 out of 10, and they will recommend continuing the trial.

During all of this I came down with a cold last Monday evening and then travelled to Stornoway, Isle of Lewis, Outer Hebrides, Scotland with my wife and a friend on Thursday (so, the day after I had the above news), but this cold has moved deep into my chest to the point I struggled to muster enough air to blow my nose and I went in to A&E last night and they gave me some antibiotics in case there's more than a typical virus going on. So at the moment I'm a coughing wheezing mess, but I think I'm on the mend. We travel back to London tomorrow evening (Monday).

Presumably I'll start Cycle 3 on Wednesday and have more news in about a month!


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #178378 03-16-2014 12:40 PM
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That is great news about your CT!

I'm sorry that you've got this respiratory infection, but hopefully you'll be kicking it soon!

Here's to continued progress!

xo,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Stily1 #178384 03-16-2014 01:49 PM
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Awesome.. So happy things continue to go well... Hugs!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #178415 03-18-2014 05:34 AM
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That's great, Seth! Hope that the next cycle goes smoothly for you.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #178416 03-18-2014 06:21 AM
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Great news! Hope the cold/virus is gone soon; amazing what a number those things can do on you. Good luck with the next round of treatment on Wednesday.

Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #178417 03-18-2014 07:00 AM
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Great news and best wishes you shake that cold or virus and sail through the next treatment!


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Stily1 #178716 03-26-2014 10:01 AM
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Sorry to be late to the thread Seth, but this is great news and I'm grateful that you share it with us! I am sorry to hear about the pleural fluid problem and the cold, but that pales in contrast with the good news!

Hang in and keep up the good work!

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Stily1 #178741 03-26-2014 09:42 PM
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Hello again!

After my last update following my 12 March hospital visit we went off to the Outer Hebrides, the Isles of Lewis and Harris (home of Harris Tweed) in far north western Scotland for some wind and waves (it's true what they say about the white sand beaches and turquoise surf, but this time of year that comes with stinging horizontal drizzle, too......dramatic and beautiful, but not for the faint of heart).

Unfortunately my cold moved deep into my chest in a big way and on Saturday 15 March I realised I might be in some trouble when I struggled to move enough air to blow my nose. I phoned the Drug Development Unit in Sutton and spoke with the Duty Nurse who reviewed my trial protocols and approved me to go get some antibiotics aside from one. That evening I marched into the A&E at the local NHS hospital in Stornoway and, after sitting for a time watching the rugby with a string of injured Scottish teenage sporty types, saw a bright young GP. The Dr listened to my story and my chest, googled GDC-0980 and handed me a box of Amoxicillin, all no charge.

One week ago, Wednesday, 19 March I visited the DDU as normal and was told that this trial drug increases ones risk of infection about 4 fold. The Dr (yet another new one!) said it was very likely I did in fact have a biological chest infection and that the Amoxicillin was the right thing to have done, but also said I should take a one-week pause from the trial drug to let the antibiotic do its work. He also had a basic chest x-ray done which showed nothing material (i.e. no pneumonia!).

As of yesterday, 26 March, my chest cold was greatly improved and the pleurisy pain had in fact also subsided quite a lot, though I do still have a nagging productive cough and night wheeze (I had the night wheeze before ever starting the trial or having this cold, so that may be something altogether different, including possibly in part related to radiation scarring, but the blue puffer does relieve this when it keeps me awake). I went to the DDU as normal, 4-hours fasted, gave blood and had a quick exam plus an ECG and they cleared me to resume the trial, which I did. I've also gained back a few pounds in the week off.

So! Back on track after a one-week break.

My parents are visiting from California, and this week we've sent them up to do their own exploration of Scotland. I'll train up and join them in Pitlochry this Friday, getting them settled in to Edinburgh on Sunday evening before I return to London that night.

My wife and I are starting to plan a trip that may take the form of motorcycling to remote northern France in early July to visit a friend who will be minding the family farm while her parents are away on a trip.

Zoom zoom!


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #178742 03-26-2014 10:05 PM
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Wow, Seth!
I'm so happy that you got the correct treatment for your chest infection. I'm also so happy to hear that you are living life to the fullest these days. Keep up the good work!
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Stily1 #178746 03-27-2014 05:47 AM
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Wish I could be in the Hebrides too, I'm so envious. That aside, glad the chest cold has been dealt with. Take care, Seth.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #178749 03-27-2014 06:27 AM
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Live your life. Give cancer it's due diligence but do not allow it to steal one moment of your fun... hugs and have fun in your travels.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #179615 04-25-2014 11:36 PM
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Time for a (longwinded) update!

Thursday I started Cycle 4 on GDC-0980, all of my various blood-work levels are good so they've authorised me to continue and issued me my next month's supply.

My white blood cell count is slightly high, but has been throughout this trial and is probably related to prior chemotherapy. I�m slightly anaemic, but only slightly and they are not concerned. My potassium, which was slightly low two weeks ago, has rebounded. Basically no issues.

I feel generally the same, so 'stable'. No scans today (other than an ECG, which was fine) so won't know more until two weeks from now when I do have another CT scan.

I asked a few questions and had the following answers:

1) By what mechanism does this drug cause weight loss? They don't really know - it's more of a case that this has been observed in some patients taking the drug. It was noted that metastatic cancer in and of itself can cause weight loss. It's also possible that because this drug works by inhibiting certain biological 'channels' that this cancer relies on, this same effect might block my ability to uptake/process glucose, which is why they monitor my blood sugar, in case of elevation. So far this has not happened to me. So if any weight loss is even caused by this drug, it�s at a cellular level and has nothing to do with the bugs in my gut (as in the use of antibiotics that kill off your good bugs).

2) Why must I fast before and after I take this drug? Simply because they haven�t done the food-interaction studies with this drug and don�t know what effect this might have.

3) I asked about my minor non-productive �asthmatic cough� and was told that this is a common inflammatory reaction to the kind/location of cancer I have. So, it�s just the new me.

4) I asked about my sense that while bicycling to work I�m not able to process quite as much air, and was reminded that while this drug appears to have halted the cancer, it remains true that my left lung is effectively not as large as it was, due to �pleural effusion� at the base - that�s fluid accumulation and cancer in general. One�s lung usually has this long pointy bit that extends down the (I think) outside of your torso, and mine�s sort of squeezed off. So likely this sense of reduced athletic capacity is simply down to this, my lung is not as voluminous as it once was.

5) Last weekend while motorcycling in inappropriate clothing I got very chilled and had a first-time episode of Renaud�s Syndrome, where the blood vessels in your fingers spasm and squeeze the blood out of your fingers in response to vibration, turning them white! They don�t know if this could be related to this drug, but said as a one-time occurrence with very good reason (chilled on a vibrating motorcycle) in bears monitoring but nothing more.

6) Lastly, I had heard that another patient had been on this drug for three years but then had to end the trial, and I asked what happened. In that patient�s case the cancer changed and the drug stopped working. Some people never see any benefit, or only a very short-lived benefit. In my case this is the start of month 4 and it appears to be working. There are no guarantees in any of this.

Onward Through the Fog!

Hugs,

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #179622 04-26-2014 05:31 AM
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Hi Seth,

Not too much here that I can respond to with any authority, but I can say this; your weight loss is not necessarily related to whatever chemo you're getting.

The body's metabolism goes into a super-secret-it's-so-high gear, and burns energy at a rate never seen in ordinary life, when it is healing from MAJOR trauma (of which cancer and cancer-treatment both qualify).

When I was shot up, I went from 236 to 145; and when I had my right chest crushed (flail chest), I went from 216 to 154. When I got Cisplatin and radiation in my initial cancer treatments, I went from 192 to 154. Finally, just recently this year, I had my liver packed with radioactive SIRIspheres and just this month, 3 weeks of Beam radiation.

With SIRIspheres, I went from 165 to 154 (haven't gotten back to 165 yet) and with the beam radiation, from 160 to 155.

I have had NO chemo during these later radiation treatments (beyond the initial treatments.)

So as I said, simply surviving trauma is intensely energy intensive, and failing to consume adequate nutrition during that period; the body will consume itself.


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Stily1 #179623 04-26-2014 05:39 AM
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Thanks for the update, and details Seth. Seems like you're holding your own, especially bicycling to work, and happy that this trial is working, minus some side effects.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #179627 04-26-2014 08:53 AM
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You've asked some really good questions. Thank you for sharing. It is of great interest to me how you react to the trial drug as John is in a trial too.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #179631 04-26-2014 12:25 PM
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So glad you're doing so well... smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #179632 04-26-2014 01:48 PM
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Being in the 'trial environment' has been very interesting. Clearly there are a lot of very different compounds and approaches being studied right now, which is exciting. It's also pretty clear they still have a lot to learn about cancer and how it all works. It seems they are realising every cancer, and every person, are different. This is only my own observation based on being immersed in the study environment, but there you have it for what it's worth.

But many of these have unworkable bad side effects for a lot of people. They're quite happy with me as I'm doing 'so well' on this trial drug.

Here's hoping it lasts!


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #179664 04-27-2014 06:03 PM
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glad to hear you're doing well Seth. Time will buy lots of new and improved treatments. Hang in and enjoy.
all the best
rob


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
Stily1 #179678 04-28-2014 04:36 AM
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Hi Seth, So great to hear all is going well and that you are still biking. Fantastic news! and thanks for your thorough update.

Best,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #179768 05-01-2014 08:54 PM
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Yesterday I managed a meeting with Professor Kevin Harrington, my original private patient Oncologist in London who sent me to this trial I'm currently on. It was a very nice meeting, I learned he's just become a first time father (!) and is running on about one hour of sleep a night (I can hardly imagine his career and then that on top!).

Kevin seemed cautiously happy with my situation on the trial; of course we would all have preferred it if the drug caused me full remission, but 'stable' and slight reduction is pretty good.

Kevin went on to tell me that these are very exciting times in cancer, and that they are right now in negotiations to start work with a whole new range of treatments that he described as antibodies that defeat some cancer cells ability to 'hide' from one's immune system. He put it in 'Star Trek' terminology as a cancer cloaking device de-cloaking device.

There are early stories coming out of the US of a few people on trials there who have been dramatically helped by these new antibodies, and in some cases it is even starting to look like these could result in a full cure, not just another suppression tool!

These don't work on all cancers, nor for all people with the 'right' cancers yet, but Kevin figures the more time GDC-0980 buys me, the more likely there will be something appropriate and new to try if and when GDC stops forking for me (which could be any time).

One form of cancer that this new approach appears to work for is metastatic melanoma, which is one of those they have considered un-curable (same as with metastatic squamous cell carcinoma, which is mine).

Anyway, I thought all of that was pretty cool!

I have a CT scan in four days, on 6 May.

Onward through the fog we go.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #179773 05-02-2014 06:41 AM
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It is so nice to see that you are feeling positive and enthusiastic in these trying times. My husband is on immunotherapy which is exactly what Professor Harrington told you about. The trials are being conducted all over the world albeit on small samples. It appears that some lung cancer patients have had tumour reduction and that is why they have now opened up John's particular trial to head and neck patients. Our MO feels these are exciting and interesting times. She also mentioned that if the drug John is on does not work well, there are others he can try.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #179798 05-03-2014 04:32 AM
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Seth and Gloria-
Thank you for a smiling start to my Saturday with your uplifting reports! I remember hearing through the blur last year our MO telling us that "immunotherapy is where it is going". My husband is almost halfway through the current 30 rounds of rads to treat these stinkin' mets.
Best to you both,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #184209 08-12-2014 10:56 PM
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Alas my luck has changed. Benefitting from 20/20 hindsight, on about 8 July 2014 I began developing some new symptoms, which became chest pain and shorter shortness of breath.

On 15 July an early CT scan showed cancer growth, increased pleural effusion, first-time but minor pericardial effusion, and my trial was cancelled as the GDC-0980 had lost its effectiveness after 6 months; ok, not good, but time for the various teams to meet and agree Plan B. The Drug Development Unit (DDU) at Royal Marsden Sutton had another trial drug they wanted to try, but there needed to be a 4-week flush-out period, and I also needed to ensure that Prof Kevin Harrington was involved in decisions and he was away on holidays that week, but ok, we had some time.

But by 18 July I had become really sick and ended up in A&E with my heart in fast Atrial Fibrillation and a whole host of other new problems (suspected blood clot in my left lung, suspected infection, worsened pericardial effusion). I was in hospital for 12 days while they got my heart put back in its box. I ended up on Amiodarone for heart beat and a daily injected anti-coagulant for the blood clot (suspected). I developed 22 lbs of oedema swelling from my abdomen down (!!). I was very fortunate in the A&E I chose to go to, and my time at the Chelsea & Westminster Hospital (C&W, an NHS hospital) was significant for the fantastic staff who looked after me there. You Americans may wish to note that this has cost me exactly nothing, which is just amazing, really.

On the evening of 31 July Prof Harrington visited me at the C&W and agreed that he wanted to try to get me into a new trial, likely one of these 'antibody' drugs, which was the answer we were afraid to hope for (after all, he might have taken one look at me and concluded I was too sick to treat, for all I knew).

A few days later I had a phone conversation with Prof Harrington. It turned out that getting me into an antibody drug trial was proving problematic, but he revealed that in consultation with the DDU he had learned that they had analysed my tumour and confirmed a certain mutation in my cancer, meaning that as my cancer cells divide to grow, they are limited to just one of two 'repair' mechanisms that normal cells can employ. This strongly suggested a *different* class of drug on trial for me, an ATR inhibitor, that selectively blocks the cell repair path my cancer does employ, leaving the other path available for my normal cells. This was the trial that the DDU wanted to suggest, but at this time they had no slots available for multiple weeks, but it happened that Prof Harrington had his own trial of AZD6738 by Astrazenica on the go an he could get me straight in to that, and this would be at the Royal Marsden Hospital in Chelsea, much closer to home than the RM Sutton DDU. Ok, sounds good!

Last week my wife and I attended Prof Harrington's trial clinic and we discussed the trial; it's an early stage phase 1 trial and they don't really know how it will effect people yet, and also I'm likely to get a fairly low dose as I'll be entering the dose escalation phase at an early stage; good in that it's less likely to be toxic, but maybe not so good as it might be ineffective at the low dose. However this trial allows my dose to be ramped up as subsequent groups demonstrate the safety of higher doses.

This week I have been working from home basically waiting to be called back in to the RM Sutton for trial screening, and we hope to start the trial drug next week. I've been put into contact with an amazing local charity called Trinity Hospice that, yes, does provide palliative care services but also provides many other support services, and they've been here to see us once and have been very helpful already.

My heart has been behaving, my oedema has greatly reduced (though my feet and ankles are still swollen), and my digestion is improved. I suspect the Amiodarone heart pill is causing me constipation and bloating, but getting off that that scary drug will require a cardiology follow up which will hopefully be scheduled/arranged by Prof Harrington's team.

Alas, just yesterday and last night things have begun to turn a bit worse. It's been very difficult to sleep for quite a while now; having to sleep on just my left side so my 'good' lung is 'up' - any other position means the pericardial effusion fluid shifts and presses and I can't breathe. Until recently I had no pain to speak of, but now I seem to be rather quickly developing new aches in my chest. Is this the cancer? The fluid? Probably both. I also have a pretty nasty hard dry cough.

And there you have it! It's just about 8 a.m. on Wednesday, 13 August 2014 here in London, England. My parents have flown over from the USA to be with me and are renting a neighbour's flat in the building. My wife has had to fly home to Canada to help with her own very elderly and sick father, but returns Sunday. I'm waiting for the other shoe to drop regarding this new trial, and wondering if it will do anything, and if will do that soon enough.

Damn, just over a month ago I was still bicycle commuting to work and basically felt fine, the GDC-0980 keeping my cancer in check. It's been a hell of a month.

Thanks for 'listening'.

-Seth





47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #184215 08-13-2014 06:19 AM
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Sorry to hear of your challenges, Seth. I hope this new trial gives some better results.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Stily1 #184220 08-13-2014 07:25 AM
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Seth -
glad to hear your parents and there to help and that your wife will return soon. Your doctors sound like they are on the ball, and hopefully the new trial will be right on target. Will be thinking of you.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Stily1 #184221 08-13-2014 07:32 AM
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Hi Seth, I'm so sorry to hear that GDC-0980 did not work out. You have been very brave in dealing with the various medical issues that have arisen and in wanting to continue with still another trial. Generations of future cancer patients will benefit from what the doctors will learn because you have decided to carry on fighting and not quitting. Post when you can, I will be cheering you on.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #184231 08-13-2014 05:35 PM
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I have faith and hope that this new drug will do what you need it to.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #184257 08-14-2014 08:21 PM
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You have been through one head spinning set of events. I hope so very much whatever follows works and keep the monster at bay, especially given the other health issues compounding the cancer treatment options. It does sound like you have a solid link to the best research specialist in the country so you should take comfort that all this is possible is known and reviewed for you. Best wishes and thanks for the update. Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Stily1 #184357 08-21-2014 08:00 AM
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Seth-
Just catching up and saw your post. I am so sorry about this setback. However, it is encouraging to note the zeal and attention the doctors are showing in pursuing the antibody treatment possibility. Best of luck as this option is investigated.

Sincerely,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Stily1 #184651 08-27-2014 08:37 AM
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Seth,

You have been through so much and your sharing has allowed others to benefit your experience - especially, about why treatments work for one person but not for another due to mutations. I imagine all of us hope that the treatments we have endured will continue to refine and inform treatments in the future so that there is some benefit to others. I hope that this new clinical trial helps you. I have a friend who took 5 fu in the early stages of clinical trials many years ago and she survived so best of luck to you! - Sophie H.


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
Stily1 #185095 09-11-2014 11:09 AM
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Yes that's him! I'm still being seen by him he makes me feel safe. I hope all your news is good and you are going to do the trial. You are in good hands.
Big hugs

Jayne x


Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator

Age 45
Stily1 #185555 09-29-2014 04:55 PM
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Hoping some good news comes through for you Seth. I have this theory of invincibility for cyclists over cancer.

Best wishes,
John


Oropharyngeal Cancer, SCC, HPV 16+, stage IV T1N2b age 45
Started in my tonsils and spread to my lymph nodes
Cisplatin x3 with concurrent daily radiation treatments started 10/22/13 finished 12/6/2013
Stily1 #185565 09-30-2014 12:30 AM
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Hello, and sorry for the 6 weeks silence, and thank you for all of the encouragement.

It is now 30 September 2014.

First the good. The fluid around my heart (pericardial effusion) *and* oedema (fluid retention between my torso and feet) have all gone away. In fact at my last cardiology follow up the Dr said of my ECHO that it was as he would expect his own heart to look. My Oncology team also spoke with a cardiology person and got approval to switch me off of the Amiodarone (yay!) and onto a much less-frightening heart date reducer called Bisoprolol Fumarate. My heart seems to be fine now.

Alas, shortly after my last, long post, my breathing became very short indeed. They tried giving me a red blood cell transfusion as I was badly anaemic, but this extra fluid seems to have further squeezed my lungs off and they took me into hospital and drained 2 full litres of fluid out of the relatively new *right* side pleural effusion (note that my cancer and the initial pleural effusions are on the left side). The drain did it's job in about an hour but they kept me in for several nights to be sure it wouldn't produce more before removing it and sending me home. This was ultimately a good thing as my breathing was now much improved.

Alas, again, my blood test numbers for several elements were now too far out for any trial, let alone any further treatment. This was a bad moment, because until they could figure out why those numbers were so far out, there was nothing they could offer to treat my cancer!

In time, perhaps due to improved breathing, perhaps due to getting off of the Amiodarone, who knows, those numbers came down enough that Kevin Harrington offered me a course of traditional chemotherapy (I was still out of line for the ATR-inhibitor trial on one blood test element, though it was slowly reducing).

So! 20 days ago I had a round of good ol' Docetaxel and Carboplatin. I gather these are relatively 'old school' chemo drugs, and nobody knows how effective (if at all) these may be for my cancer at this point, but it's a treatment option that a) may buy me some time until something better can be figured out, and b) could put me back into consideration for the Antibody phase 3 trial (which is currently reserved for those who have had a platinum-based chemo within 6 months.

This chemo was, to be British about it, pretty rough. The anti-sickness pre-medication worked well and I had no nausea, but I did have bad broad gut paint and then diarrhea and related cramping. I also naively thought the process would last about three days. But no, more like 8 at least.

At this point my main complaints are mainly shortness of breath (am I anaemic again? is my right side pleural effusion coming back?) and of course, chemo brain. After 9 weeks off work since my heart scare and through first chemo, I put in 4 half-days back at work up until yesterday.

Today I've started the pre-medications, I will go into the hospital to give a blood sample, and I have my second chemo dose tomorrow (1 October). I hope we've learned better how my body responds to this particular chemo. I've also had some very good advice from the Trininty Hospice nurse who makes house calls (basically, between the advice and what we've learned, use more oramorph (within reason) for the gut pain, and use Imodium for the diarrhea at the right time).

Once the dust settles from the second chemo they'll assess me to see if it has had any effect, and then we can decide a next path. More of these chemos? Up to 6 rounds. Or, a trial of some form or other?

My weight is stable at about 133 lbs (60 kg) and I'm very skinny. I've also shaved my head again as my hair is all due to fall out anyway.

So, my options are thinning out, but we carry on.

Good luck everybody.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
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Hi Seth, I think about how you're doing all the time. You and John do seem to be in more or less the same boat. He has had two rounds of taxol and carboplatin and has not been able to have the third because his neutrophils are coming back really slowly and the doctor had to cancel the chemo two weeks in a row. The only good thing is the interventional radiologist is able to schedule him to go in to have another esophageal dilatation (will post about this at some point). It is hard not to be able to see a clear way forward and to be in a holding pattern all the time. I guess one will just have to be philosophical about it.

Lots of luck to you on your second chemo and hope that the gut pain isn't too bad this time. You are always on our minds.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #185571 09-30-2014 07:30 AM
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Hey - hopefully this chemo helps. Is there anyway you can have your biopsy tissue tested to see what chemo is most effective against the cancer? hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #185579 09-30-2014 10:37 AM
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Thank you Gloria and Vegan.

Vegan, to your question, while I was participating in my trial of GDC-0980 they did sample and study my tumour and concluded it may be a candidate for the ATR-inhibitor trial drug, but alas the version of that that I have ready access to here (there are multiples) is only in very early Stage 1 trial, so if I could get in on it, it would be a very low 'tolerability level' stage of study.

The approach regarding chemo as I understand it is my cancer has already 'survived' the logical chemos to try, so now they're trying what's left. It's not rocket science, I'm afraid. Mine is a second recurrence. There are not enough statistics to apply to my case to be 'scientific' about it. My cancer has shrugged off Cisplatin twice now (that's the Big Gun, I gather).

This combo I'm on now is my very senior-level Oncologist's best guess at what might work, or at least help, while other stuff is getting figured out.

As I understand it, this is the state of the art in my case.

Not a very satisfying answer, no doubt, and if anyone knows better/otherwise I'm all ears.

Mine is metastatic Squamous Cell Carcinoma, positive for the HPV P16 markers (the GDC trial targeted that), with the ATR mutation (meaning the cancer cells can only split/multiply via the ATR pathway.

Once I've survived this second chemo (fingers crossed, and planning to drug the heck out of my symptoms this time), they do a CT and see what they can see. And then we discuss.

At the moment I'm extremely anaemic, I rather wish I had known this sooner and could have had a transfusion sooner. I need to complain more, it would seem. Live and learn, right?

Good night all, from London England (still part of Scotland)

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #185582 09-30-2014 11:22 AM
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Seth, when the MO suggested taxol and carboplatin, she called them "the bread and butter stuff." John can only have 80% of the normal dose as his blood count is so low. The third chemo when it happens on October 14 will be further reduced. I know this will help him deal better with the side effects but I have no idea if remains effective against the cancer. He will have a scan on Oct 17 and I guess at that point we find out.

Once more unto the breach ...


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #185591 09-30-2014 02:49 PM
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I had six rounds of Docetaxel and Carboplatin in 2008 after my SCC metastasized to my lungs. I had a reduction in tumor size and bought some time to find a clinical trial about which my MO was enthusiastic. That trial with Alimta gave me over a year with success before my tumor grew. Another trial with Avastin gave me another year with success in tumor shrinkage. Since that time I have had pulmo treatments and radiation. My last treatment was in August 2013 and I have NED. The cancer is at bay.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
Stily1 #185610 10-01-2014 06:59 AM
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I meant a testing in the states in California (your sample is sent to them they test it against a variety of chemos to see what is effective. As for the anemia... protein and iron my friend. Eat healthfully. hugs and keep on pushing.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #185611 10-01-2014 07:10 AM
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Interesting Cheryl, I'll have to ask about that test! My Oncologist is top of his field in the UK so I would hope he knew of such an option! Whether available here or not.

Update, I went looking and found this relatively recent write up on chemosensitivity essays which suggests it's pretty un-proven technology. Do you have better info?

I think there are different kinds of anemia. Mine is low blood cell count, not low iron content of the red blood cells, so I think the only real 'fix' is pumping more blood cells in there, not pumping up the few that are there. That's my impression anyway.

I'm told the transfusion has given me my color back. I just checked, yep, rather red in the face! Well, I'll take that as a good thing.


Last edited by Stily1; 10-01-2014 07:22 AM.

47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #185613 10-01-2014 07:50 AM
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I don't know if there is a clinically accepted test, that I heard of, for chemo sensitivity, reactivity, or assay test for that matter, for each individual patient with SCC in head and neck, yet. Maybe some new targeted therapies, in clinical trials, like yours, test pathways, immune response, oncogenes, and a lot of new ideas are still in laboratories, testing. Even when I had Erbitux, there was no assay test for KRAS mutation like they do for colorectal cancer since it didn't apply for H&N cancer. Let us know if you find out anything.

One of my oncologists periodically tests my CEA, kind of unusual, in my blood work since it can show an increase for a recurrence after treatment, surgery, in the head and neck, but should not be solely relied upon.

As far as anemia, I have it chronically. It could be from bone marrow suppression, not making enough rbc, treatments killing off the RBC faster rate than they can be replaced, which cell life is from 90-120 days, not enough rbc to pick up hemaglobin in the lungs, etc. Transfusions do help QOL, can be life saving, but have risks too, which were outweighed by not doing it. They do mine if below 8, 7, but depends how well I'm functioning, and could be 9. I go by the hemaglobin.

Good luck with everything, and thanks for updating.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #185644 10-02-2014 06:26 PM
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Paul, would your anaemia not be related to your renal failure?


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Stily1 #185646 10-02-2014 06:37 PM
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Not really, it didnt cause it, but made worse. I was always anemic or borderline most my life due to an inherent metabolic disorder. My anemia got really bad post treatment, usually hemoglobin is less than 10, and my creatinine was always 1.0 pre-treatment until I had kidney failure as a result of chemo via septic shock, sepsis. It's 2.3 now, new base level, but way down from 7. Although acute kidney failure, CKD, as you probably know, can cause disruption in the erthropotein sp making, so to some extent, yes.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #185720 10-07-2014 06:47 AM
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HI - okay the testing I am talking about is now coming more to the forefront. I have a friend who works for a general surgeon but he does a lot of breast cancers - and now - post biopsy they routinely send a section out to california for this testing. It's relatively new but it's a bigger push in the "individualized care" platform that most hospitals are trying to push.

Coco had her dad tested and they recommended the same chemos his oncologist suggested and this held his cancer at bay for quite sometime.

look it up. It might be something you can suggest. While most top drs are aware of what's going on in their fields some of the newer stuff may not have crossed their desks yet.

and some are just downright stodgy... but when it comes to your health you want to be progressive. Hugs and so glad you're feeling better...



Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #185725 10-07-2014 09:16 AM
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A while ago (a month or so back) something posted the info about the with the name of the Californian company under the Introduce Yourself thread. I actually went and looked up the company online. When CherylD mentioned this in reply to Seth, I tried looking for the info again but couldn't find it. So, the info is actually on this forum.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #185728 10-07-2014 10:40 AM
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This is not the link, but are we talking about a chemo sensitivity test, such as this?

http://www.rationaltherapeutics.com/cancer-testing/index.aspx


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #185734 10-07-2014 02:34 PM
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PaulB, I believe so but the name of the company might have been different.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #185754 10-08-2014 07:56 AM
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Yes... it is one that determines the best type of chemo to use to best tackle your cancer. I too am not sure of the company - I just know that they require a fresh biopsy sample and our local hospital regularly sends the tissue out for sampling to do what they call - personalize it to your cancer.

That said. I think it could also be done in house at some of the big CCCs. Though I imagine were that the case it wouldn't be sent to Cali.

hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Stily1 #185805 10-10-2014 12:21 AM
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Well folks, I'm day 9 post second chemo and while yesterday was pretty ok, the evening saw the diarrhea catch up with me and I'm using Imodium for that and feeling fairly rough.

Rather hoping my Oncologist has something 'better' to suggest following a CT scan within the next ten days. He's mentioned an anti-PD1 trial, but I've gone looking and these don't seem as promising as I might have hoped.

We shall see

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #185814 10-10-2014 12:33 PM
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Hi Seth, John was in a PDL1 trial. Although it did not work for him, there were others for whom there was some tumour reduction or the tumour stopped growing. This was information given by his oncologist who is in charge of Phase 1 trials at the hospital. With the trial drug, there were few side effects -- certainly nothing like chemo -- although John did have diarrhea for two or three days after which Imodium took care of. Do talk to your doctor about what results they have seen in the patients in their trial group.

Sending you some positive vibes across the pond and for sure hoping for the best for you.



Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #185903 10-14-2014 03:33 PM
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Seth,
I think of you often and am humbled by your spirit and attitude. Wishing you many more option,s and an eventual cure.
All the best,
Rob


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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