| | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | 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!
| | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | 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
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | 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.
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | 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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!!!
ChristineSCC 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  | | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | 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.
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Here's a link to the drug trial I hope to bet in to: http://clinicaltrials.gov/show/NCT00854152This 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.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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. 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
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
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