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#186958 12-01-2014 07:05 AM
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So, reticent and negligent, the prodigal HNC patient returns with some less-than-pleasant news. My 6 month PET scan came back with 2 spots, one in the neck that is very small and could be nothing but is probably a recurrence that will require surgery (wonderful) and a second spot in the chest which is "concerning".

I meet with my RO on Wednesday, but my ENT and the pulmonary oncologist he spoke to believe this to be too deep to biopsy. Their recommendation right now is to get a targeted CT scan in about 6 weeks and take another look and then determine treatment options. I see from reading, however, that distant metastasis to the chest is not a particularly great thing.

The ENT described the treatment as "for cure" so I am guardedly optimistic, but I must say my reading has not been encouraging to this point. Hopefully my RO has something more encouraging to say although we (my wife and I) worry he might have a bit of and "I can save everyone" complex.

As before, I'm frightened, a bit depressed and very worried. Maybe it's a bit of a false positive on the PET scan but I think that is foolishly optimistic -- I am preparing for the worst and considering curative vs. palliative discussions -- I hope they choose their words wisely. Meanwhile, all I can do is wait until Wednesday to talk to the other doc and then hope for good news at the turn of the new year.

I had hoped I had this thing beat and assumed I did. I guess I'm lucky they are doing 3 month scans as any hope I might have hinges on the idea that early recurrence/metastasis at least lends hope to curative treatment. As before, I am so lucky for my wife -- she spent another long weekend sheltering me from what I think of as my own personal "Pigs on the Wing" -- my sadness, fears and anger over this stupid, unfair disease. Yeah, feeling a bit sorry for myself today. I can muster Hellion by name, Hellion by nature fighting spirit when they tell me my options -- today I just need to feel bad, feel sad and feel like everything sucks.

Last edited by TheHellion; 12-01-2014 07:11 AM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Try not to worry... One of the members here had a son with a spot on his lungs... It was scar tissue. Hopefully it's something environmental, or maybe something you aspirated. It doesn't have to be cancer. Hugs.

Last edited by Cheryld; 12-01-2014 07:42 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
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Yeah, I know how you are feeling. It's cathartic to vent, so vent away.
This disease and all it's incumbent fears are horrible. Just try not to let yourself slide into that grave . You really do still not know exactly what you are dealing with here. But I get the worries and fears. Try not to borrow sorrow from tomorrow.
Why do they want to wait 6 weeks more? If this was "us" I would want a definitive answer and start of treatment now.
Keeping you and your Wife in my thoughts .
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!
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That does stink! Vent all you want. Hopefully, there are other reasons to cause this uptake, I had my share, but is difficult to say without a biopsy unless it shrinks, disappears in that wait time. I guess the lung suspicion is too deep? An FNAB, under ultrasound guidance, may be possible for the neck lymph node, which results may shed more light in the direction to go.

Good luck, and hope for better answers, reassurance with your meeting.


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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Hellion, I'm sorry the news is not more encouraging. It is only human to be scared and sad, so give yourself permission to be so. Keeping you and your wife in my thoughts.


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.
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Im so sorry you did not have the best results. Try taking it one step at a time and not to get too far ahead of yourself. If after further testing it comes back as a recurrence, seek out a second opinion right away.

Wishing you all the best!


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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So sorry to hear that, Hellion. Hope Wednesday's visit gives you a clearer picture of the options. Having just been through a six week wait for FNA/ultrasound which turned out okay I know how horrible the wait is. I've had the wait before too on several occasions. This time I had a period of extreme sadness then remembered all the info I'd got about meditation etc from the cancer psychologist. I wrote a diary and Googled "how to wait for cancer results", finding a couple of strategies which helped.

Talking to a psychologist or counsellor might help a lot.

My love to you and your wife.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Go ahead and feel bad, feel sad and a feel like everything sucks day. I can only hope for some decent news on the next appointment.


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
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Thank you all for the good advice. I was hoping for a simple resolution to this latest scan -- now it's time to see what we do next and when. I just like having some place to shout sometimes, hehe.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Jan 2013
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The fork in the road you stand is where I have been too. My "spots" on the lungs were there in the initial scans and could not be ruled out as distant mets. Since it was proven to be so, I got a M0 and trotted along the curative path.

I went round and round with pulmonologists to try to figure out the "spot" but never was able to diagnose it.

After treatment, the scans showed it remained there; so, the logic went if it was cancer it would have changed (i.e. gone away or reduced) and since it did not change it was not likely cancer and likely an infection or scar.

The next full scan about a year out showed it disappeared so it was some infection.

During that first time interval between it being shown and not knowing for certain was quite unsettling to say the least. For me it was the most difficult thought I had to manage as it was the one I could not assign any rationale.

When he second scan after treatment showed it remained, I had some solid ground to get out of the limbo land.

As we always say, it's not cancer until proven and that certainly is the case with the spot on the lung.



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
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Yup... it could be numerous things. It should of course be given its due diligence, but its not cancer until the biopsy says it is. 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
Cheryld #187021 12-05-2014 04:57 AM
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Well we met with the RO and the spot was definitely not there the last time so things look poor. We have a meeting with the chemo oncologist today but I think that may be less important than it was. We'll see what the CT scan says but at this point my RO feels like we're in the palliative care mode. We are going to get our diagnostic CT on the 26th and get second opinions, but at this point it looks like we're kind of screwed. QOL is so important to us -- that said, I'm very likely willing to give the curative path a shot if they're willing to shoot.

Another day of tears, another day of imagining leaving my beautiful, wonderful, amazing wife and it hurts. Fingers crossed that the CT shows something positive or at least curative, but with Wednesday's consult, a door closed -- there are a few windows left open in the room, though, and maybe we can slip out of one of those before this thing notices we've even moved haha.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Posts: 5,260
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See I have issues with drs who immediately jump into palliative mode without a firm dx... That whole thing completely effects a person's mindset and overall health.
You don't know its cancer, and either do they.
Secondly if it is, there are trials you can try.
Thirdly - I know someone who had SCC - got though it still smokes, has had a few spots on her lungs and is still going strong - they couldn't confirm or deny it was cancer but she is at this point in good health two years out.
?
See the onco I dr.

And good luck.. Hugs!

Last edited by Cheryld; 12-05-2014 07:18 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
Cheryld #187032 12-05-2014 08:27 AM
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Thank you Cheryl. I'm with you, believe me. I'm clinging to my 1% (or whatever) chance and I'm going to look for every out on this, believe me. I haven't and won't quit fighting -- I just can't see leaving my wife and kids yet. It may not look good, but I don't want to accept failure. Who knows what may happen -- I know it ain't good, I reckon it's probably worst case, but I appreciate your optimism because optimism is a wonderful thing!

Another lyric I live my life by (for better or for worse) -- "Spit In your eye, I will defy -- you'll be afraid when I call out your name. I'm not a number, I'm a free man, and my blood is my own, now. Don't care where the past was, I know where I'm going." - Iron Maiden. Who says 80s metal has nothing to say?

I'm doing my very best to believe that they don't know anything and as such I get to ride on and on and on and on and on.

I should note (hence the edit) in fairness that the RO hasn't made the call and is hopeful that we can get more information. I pressed him for scenarios and odds and he was honest and forthcoming. This is just an indication of the direction the conversation went -- I just seem to like to know scenarios and odds. I'm reporting these things out because I like to shout about things I don't like and you guys are the people that understand the things I am shouting about.

I know too many people here have suffered and lost and you guys, then, know why I cry, why I'm so sad and why the very idea hurts way more than the radiation and chemo ever would. Like I said, though, thanks for the encouragement -- the one thing I know is, whatever the odds, none of us know for certain what will happen until they know more for certain. I'm still hoping!

Thank you!

The Hellion

Last edited by TheHellion; 12-05-2014 09:19 AM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Jun 2007
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Im not one for focusing on the odds either. Every single patient is an individual with different variables. If I went by the odds, I wouldnt be here right now. Never count yourself out even when it looks like the odds are stacked against you!

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
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I'm no doctor of course but the terms "curative" and palliative" do not define outcomes but treatment options. Prognosis is just statistics and not a predictor of any given outcome.

Palliative treatments manage the cancer and when able to keep it under control one can experience pretty good QOL and longevity.

We have folks here today who are living examples of survivors managing through recurrence and palliative treatments.

Lastly, as mentioned, put on the research cap and see what other options may be available to you. Trials and other less medically vetted options become more acceptable when traditional treatments are no longer options.

Stay positive! I always used to see some statistic and say who says I'm not in that group, nobody knows either way so believe!

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
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If you ask an oncologist, you will probably get the answer that Don gave above. I had such a conversation with our MO and she said the chemo John is receiving is palliative, so was the trial medication he was on. Where I stand, it does not matter what the word is, palliative or curative, if the medication manages the cancer and slows it down, then I will take it.

Whether John is sick or not, with every passing day, we will have one day less together. This gives me the impetus to live every single day well and with no regret.


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.
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Hellion, I haven't weighed in because, frankly, it sucks to hear the news. I, too, think of your family and can't imagine what you are experiencing. AI even shed a few tears for you.

There is nothing in life I know that has been worse than seeing doctors that stop looking you in the eye to tell you how sorry they are. I stopped counting in double digits about 4 years ago.

If there's anything I can do, let me know. If you want to get a second opinion around here or Houston, I would be glad to help make that happen.


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
Uptown #187077 12-07-2014 05:38 AM
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Thank you guys. I know you lot have had a harder time than I, so I appreciate so much your experience and encouragement.

I'll keep you posted when I know more. For now, we watch, we wait, we plan and we hope. Boxing Day is suddenly something I am both anxious for and terrified of, just a bit.

Thank you all!!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Oncologists likely look at numbers and statistics because they know that some people don't make it and some do and they don't always know why. I know that my husband defied statistics. His MO shared with him recently that she really thought he might not make it given the size of his tumor. I agree with Christine about statistics and I agree with many others who have talked about ways to cope with uncertainty and waiting and trying to live in the moments that we have right in front of us. I know how difficult this is, and was, for me and I hope that you can find a way to do this. But it does suck and I know I vacillated between hope and despair. I'm so glad you have a place to go where people understand what you are going through.


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
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Hellion,

I am so sorry to hear the crap news. This awful disease is unfair and cruel. I am praying it not cancer and just an infection. Remember, its not cancer until it proven. Take it one day at a time my freind.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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Hellion,
I wish I could think of something helpful to say. You are a feisty person, and I think you are going to find the determination to enjoy the holidays. You will know more on Boxing Day - but in the meantime, live in the moment, and enjoy the beauty life offers. Will be thinking about you and yours.
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.
Maria #187204 12-15-2014 05:10 AM
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Well thank you also, hockeydad and Maria. I am still hopeful, and of course I am hopeful for what we might find out at our University hospital as well should the worst news materialize.

For now I intend to enjoy my time, try not to worry until we know more and then decide what we can do from the options we're presented when the time comes.

Thank you all!

Happy Holidays

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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So as an update to anyone following, I have received the readings on my CT with contrast and there is good news and bad. The good news is, it appears the original site is looking good so the reading there may not be a recurrence at the site. The bad news is, the distant metastasis to the lungs is confirmed. They are hoping for a biopsy if they can safely reach it.

I consulted with our local University Hospital and it appears I may be a good candidate for some clinical trials. The one the research doctor is recommending to start (as he believes we have some time before things go critical) is comparing Cetuximab to Cetuximab + BYI-117 (a protein inhibitor). I would first receive Cetuximab and then add the other drug if I am not responding well enough to the Cetuximab. As my tumor is "low volume" he feels this study (in Phase II) would be a good choice.

The second choice would be to do a phase II platinum +5FU + Cetuximab + some kind of immune-therapy but he thinks that might be too strong. As this is my life, my tumor I am uncomfortable with terms like "low volume" and "too strong" - my instinct is to go in heavy rather than limp in. I need him to choose his words VERY carefully at our next meeting.

I could then look at some second and third line options down the road (in a few months, a year? not sure there).

My question is, has anyone any experience with these? I've obviously done a lot of reading and discovered that Cetuximab and the BYI719 product have some potential but that these are relatively small gains - adding perhaps a few months up to a year or maybe two. These are nice, don't get me wrong, but they do come with some side-effects and risks.

If anyone has any thoughts or opinions, I'll be happy to read them.

Thanks,

The Hellion

Last edited by TheHellion; 01-06-2015 07:34 AM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Hellion, I'm really sorry that you are in the same boat as we are. Maybe you would like to ask your doctor what kind of outcomes he has got for each option so far. Even for John's phase 1 trial, the doctor was able to tell us how many patients with head and neck cancers have seen the tumours shrinking and how many have had tumour reduction. That may help in making a decision.


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.
gmcraft #187497 01-06-2015 07:49 AM
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Gloria,

Thanks for that advice -- it's on our list of questions. I think of you and your husband often as I know you are going through the same thing. I hope to consult with the research doc on Friday as he has a slot open for a trial that will close soon. I think that is the BYL-117 trial, but it gets a little confusing.

Thank you!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Dec 2010
Posts: 5,260
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Hellion I am sorry. I am not sure how they confirmed the mets without a biopsy but I guess they have a good inkling. Best of luck and fight fight fight!


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
Cheryld #187509 01-06-2015 02:42 PM
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I keep mixing up the numbers for these studies. It's BYL-719, not 117 or 119. No head for numbers here.

Cheryl,

They have confirmed the growth and, because biopsy is so risky, they are using the percentages to assume mets from the original source. If they can't biopsy (and currently my ENT and the pulmonologist they brought in don't think they can) then we will be proceeding under the assumption. It's not my ideal methodology, but we recognize their model is probably correct.

Either way, it appears to have doubled in size form ~1 cm to 2cm in 6 weeks so it's definitely not going away.

Thanks!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Nov 2014
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May I ask the people with mets to lungs, were there any hot spots in the lungs on the original PET? Did you feel any systems? I hope these new treatments show promise for you! I can get lost just reading research articles on H&N cancers. Being here makes me want to learn as much as I can about what others are going through.


CG of husband,50, history of smoking
BOT HPV+ and one node
diagnosed 11/14
8 chemo and 36 radiation treatments
2016 40 HBO dives, removal of two teeth
one year scan clear
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Hellion, I'm not happy to read your update either.
Is there a possibility that this could be resected?
I'm presuming that you are at a CCC? Have you considered getting another opinion at a CCC?
I wish you well and trust that your docs will give you options.
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!
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Hellion, I am not happy with your news, either. I have been looking at the radioactive lysteria monocytogene trials and they are soecifically looking at head and neck cancer but only HPV+. There has been some good results with pancreatic cancer.

"A new recombinant L monocytogenes vaccine, Lm-ActA-E7, was designed by transforming an attenuated Listeria strain with an E7 expression cassette. The cassette consists of the HPV-16 E7 sequence fused to the Listeria protein ActA. The resultant strain of bacteria secretes E7 antigen as a fusion protein with ActA."

It might be worth asking. Also, if you recall the blog of Leroy Seevers, a news correspondent, he had radio frequency ablation to remove tumors in his lung, although it wasn't squamous cell. The common thread has been slow growing cancers.

Best wishes for you.


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
Joined: Mar 2014
Posts: 286
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I'm just gutted by this news. Mate I am so sorry I missed this thread until your message today. Cancer brothers we are, started the same treatment on the same day, went through so much together. So many messages and posts, helping each other out.

You're in my prayers brother, and will be every day.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
tamvonk #187518 01-07-2015 06:35 AM
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tamvonk, Uptown

I'm working with my University Hospital now in addition to my CCC -- it's reportedly one of the finest research universities in the country, so I have THAT going for me.

Nothing has been decided yet. The good news is it's "low volume" and "growing moderately" so they are taking a little time to piece together advice and recommendations. The research doctor (yes, he's a salesman) wants me to start a bit lighter and stick to biological agents to start --- he says there is time for the bigger guns if these (Cetuximab and then adding an experimental blocking agent) don't show good promise. We know from my previous treatment that I am not a great candidate for Cisplatin.

I hope he's right.

As I said in an earlier post, my life, my tumor, I kind of want the Minuteman Missile approach, but that may just reduce my QoL for very, very little gain anyway. What I need, what all of us need, is a wonder drug! We actually have pills to cure restless leg syndrome but this continues to beat us?

Yeah, cheap shot, I know, but still... I can't help but think this is more important -- I know it is to me (and I know they ARE researching this every day -- I'm just feeling a little bit bitey today).

So yeah, we're gathering a bit more data, hoping they can do a biopsy (find that out tonight) and that either way they can recommend some experimentals that might actually make a meaningful difference. I'm not ready to quit yet, so I'm pretty much insistent they come up with something. Thank you all for your support, advice and words of encouragement.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
OzMojo #187519 01-07-2015 06:36 AM
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Oz,

Thanks, mate. We're not beaten yet, my brother down under! Thanks for being there, my friend!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Oct 2012
Posts: 1,275
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Hellion, John had to have two lung biopsies when he entered the drug trial. It was a condition for being accepted. As he had one lesion in the pleura, it was the one that the doctors used. All the other lesions were too deep.

As the doctor explained it to us, "It is like pricking a balloon with a sharp needle and then withdrawing the needle without the balloon collapsing or losing too much of the air inside it." John was given local anaesthesia and not put under.

I know the mantra is, "It is not cancer until the biopsy says so." However, unlike biopsies in other parts of the body, lung biopsies are far more tricky and risky.

When John was initially diagnosed, we were told that the first place the cancer would spread to, if it was going to spread, would be the lungs. When the metastases were found, his CT scan report said that the lesion "had the typical seed-like appearance." That was when the doctors knew it was cancer.

By the way, when John got taxol and carboplatin recently, he responded much better than when he had cisplatin. So, don't let that bother you too much. Do remember, though, even with trial drugs, you will get side effects, many of which are like chemo side effects.


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.
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Hellion,

I want to suggest that you consider looking at the clinical trials going on at NIH. There are immunotherapy trials for metastatic cancer like:

https://clinicaltrials.gov/ct2/show/NCT01967823?term=NIH+immunotherapy&rank=6

There are also HPV immunotherapy trials going on too:

https://clinicaltrials.gov/ct2/show/NCT01585428?term=NIH+immunotherapy&rank=3

Another thought is to have your tumor sequenced and find out what the mutations are and then choose a drug or clinical trial that targets your tumor's particular mutation. We paid for the cost of this sequencing out of pocket as insurance won't cover it. It ran about $5k and the outfit we used was Foundation One.

I have a friend who has metastatic melanoma and was given 3-6mos to live and is still going at 4.5yrs. There is still cancer there but he's stable and enjoying life. And I read about people in the Washington Post who are clean. They did these NIH immunotherapy trials and were lucky.
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
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Thinking of you every day brother.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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Every day.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
OzMojo #187745 01-19-2015 12:08 PM
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So...

For those following, there have been a few changes. The first is, a second tumor popped up which was easier to reach than the first and thus they were able to perform a biopsy which confirmed it is SCC cancer. I have been working with my local university and will hopefully be beginning the Cetuximab + BYL719 study this week or next.

This experimental is a protein inhibitor which makes it more difficult for some cancers to grow -- this is considered a good candidate cancer for the study. My Oncologist a the university believes this is a good 1st line and that he would have some 2nd or 3rd line options, some of which involve some immunotherapy experiments, when that time comes before we have to go with the SoC stuff.

None of these are considered curative, but there is hope they can greatly shrink the tumors and inhibit their growth considerably thereby buying decent time with a good QoL.

Wish me luck. I'll post more when I have more.

Thanks,

The Hellion

Last edited by TheHellion; 01-19-2015 12:11 PM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Nov 2009
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That is good news: a plan of action.

Thinking of you.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Also glad you have a plan in place, and even back-up, if needed. Good luck with the trial, and although not curative, it may allow more time, offers hope, and who knows what new drugs, treatments, may come out in the near future.

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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Hellion, good luck with the trial. Also glad to know that there are second and third line possibilities.


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.
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Hi Hellion

I've been following this thread with hopes to get some information for my mother. As it stands now Palliative care is our only option.

My mothers cancer is wraping around her Carotid Artery and cancer cells are in the cheek of her face and neck. At this point surgery or radiation is not an option.

My mother had treatment of Cisplatin with F5U and her cancer did not respond to this treatment at all.

We went to MD Anderson two weeks ago to see if there was a Clinical Trial available to help her. We were told about a Trial that consist of a immune drug and a Chemo drug. It was suppose to build the immune system so the body could fight off the cancer. Then when the oncologist compared the CT scans from home after the Cisplatin to the present CT scans taken at MD Anderson it showed no improvement after the Cisplatin so that disqualified my mother for the clinical trial.

The oncologist at MD Anderson recommended Carboplatin/Taxol. We agreed to do this treatment. The MD Anderson Oncologist is going to work together with my mothers oncologist here in Louisiana. We decided to stay in Louisiana to take the treatment because if my mother gets to sick from treatment I need a Doctor/Hospital to bring her to.

Hopefully after this treatment my mother will show some improvement and the Clinical Trial may be an option.

I admire your courage and determination as you battle this horrible cancer. We are not giving up either and hopefully at the end of the road we will beat the odds.

Prayers to you
Heidi

Last edited by sweetpe1; 01-19-2015 05:33 PM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


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We are all with you brother. Keep the chin up.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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YAY... glad they have something on the go. And the one thing I don't understand is the taking their time thing. With the moderate growth etc. They can't predict that - I disagree totally with that tact - cancer is cancer. It changes and as the body gets weaker it gains more of a foot hold. So time is always of the essence (as the appearance of a second tumor would indicate. In that situation I tend to personalize it to the drs. If this was a close family member - your child? mother? sibling? Would you want to take your time?

Hugs... don't know for buying time. Hope for a cure and thing positively.


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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Glad to hear they have plan for you. You're in my thoughts!


Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
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Ditto , keep fighting . Thank you for the up date I have been following your posts and thinking of you.
Di


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
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So today we begin. I will try and post at least every week or so to describe the process in case it should come up for anyone else. I was randomly selected into the group that receives the experimental from the outset which is good so I took my first dose today and will take it every day from now until....?

The side effects of the study are expected to be light and mostly related to the Cetuximab/Erbitux (which I will henceforth refer to as Erbitux). The study will continue until:
1) It is determined it has no effect (this happens in some percentage of people but the study has not yet released those numbers)
2) The side effects reach a point where QoL becomes something we have to discuss
3) Something better comes along or I am miraculously cured

For what it's worth, I am quite hopeful that this is a miracle drug and that weekly infusions are as bad as it gets for at least some length of time to be determined.

And so it goes....


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Keeping you in my thoughts, Hellion.


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.
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Best of luck and wishing the best of outcomes for you.

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
donfoo #187885 01-26-2015 04:54 AM
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Thank you Gloria, Don and everyone else. I know I'm not the only one going through this -- it sucks for all of us!

I'll post at intervals when I know more.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Ive been following your progress. Wishing you all the very best with everything. Please check in often. You have many who are in your corner rooting for you.

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
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Glad to hear the trial has begun.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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YAY!!!! best of luck with it. I am hoping for your miracle. 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
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Hellion, I have been following your posts recently. Offering you all my positive thoughts and prayers! Glad to hear you are getting started on the treatment.


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
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Dear Hellion,

Here's to wishing you peace of mind as you undergo treatment and hope for a cure.

I know that the anxiety was one of the hardest things to deal with and still is.

I will keep you close in my thoughts.

Love and hope 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!
Kerri #188073 02-01-2015 09:43 AM
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Thank you all for your well wishes - we are hopeful!

So the update, I did not get Erbitux infusuion on Friday as scheduled -- and I am not taking the experimental as of Friday. They did my labs on Friday and discovered that my CK levels had shot up dangerously, although kidney and liver functions appeared normal. This seems to indicate a sort of ore renal failure scenario possibly brought on by tumor lysis.

The good news is we are hopeful that the tumors are dying quickly. The bad news is that I am in for fluids all weekend and lots more labs. Additionally, there is a very good chance I will not be able to stay in the study as I am potentially a dangerous candidate. Certainly I am disappointed as this drug, as a first line, is considered so high potential.

We know nothing for certain yet other than that we have to evaluate after they get the CK levels back to normal which appears to be happening with the fluid flushes. Happily, I never even got close to renal failure because of the test they do caught everything early.

Speaking for general health, one week of Erbitux has caused the famous rash of which they speak and my face is dry, flakey and itching like crazy, even with the antibiotics and cream. That's OK, though, as I want the tumors dead, dead, dead more than I want to look beautiful right now. There will be time to get my gorgeous face back when they figure out how to beat this thing into at least a tenuous remission if not a cure!

My research doc will talk to me at our appointment Friday about next steps. I am hopeful we can stay on the drug -- sounds like it might be working well. Otherwise, it may be on to clinical trial second line which is some kind of immunotherapy but I don't know much about it yet.

Again, thank you to my followers and well wishers -- know that The Hellion is far from beaten, but I really need to start winning a dice roll or two!

Cheers, all!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Dear Hellion,

I am sorry to hear about the discontinuation of the Erbitux, however, I am so grateful to hear that they caught the kidneys in time!

You have a positive attitude that is admirable in the face of all of this mess!

Keep up the good work and may those tumours be gone, gone, gone!

Love and hope 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!
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Dear Hellion,

I'm sorry to hear about the complications. But thrilled to hear your bright and strong spirit shine through. Hang in there as there seems lots of ways you can move on this. Good luck. 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
Joined: Mar 2011
Posts: 1,024
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Always in my thoughts and prayers.
Stay strong.
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!
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Great that there's some good news amidst the complications. I feel very hopeful for you.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Oct 2006
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Hellion,
Best wishes with getting things back in line! Praying for you. I appreciate and hope for your "Tumors Dead, Dead, Dead" more than physical looks right now! Something we can all agree on and want for you as well as one another.
Whatever it takes, but Never, EVER Give Up!


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 ****

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I've heard that the worse the rash the more effective so that's a good sign.. Hopefully everything will level out 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
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Thank you for the informative update, Hellion. That's the fighting spirit! Regroup, and try again or with something else.


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






tamvonk #188252 02-13-2015 04:49 AM
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So,

Been a little while since I updated. After a tumor lysis syndrome scare in the first week of the study, my research doc and study coordinator worked hard with the manufacturer to keep me on the drug at a reduced dose. He is confident that the drug is working well and that the lowered dose should keep me out of danger. Interestingly, aside from (apparently) terrifyingly high CK values, I never exhibited either the lab work or the symptoms otherwise associated with tumor lysis syndrome (i.e. cardiac stress, renal failure, etc.). We laughed when they said that this had only been seen in dogs and monkeys � it somehow doesn�t surprise me that I am, yet again, a problem child.

So, last Friday we prepare to begin again � as soon as labs come back with the expected CK values (they were dropping all week as expected) we can take the experimental drug, wait our hour, do our EKG and get the Erbitux going. Well, my blood Hemolyzes. Two hours wasted, but ok, let�s go again. And again. Nearly eight hours later feeling frustrated, confused and still worried that something else will go horribly wrong, they get the results and I�m started again.

We have no idea if it�s doing anything, but the doc is fairly confident that the elevated CK levels indicate the drugs are working well � it is a mystery that I never really exhibited full on tumor lysis syndrome, only that one value, but he�s happy and confident and I am too. I know he spent a long week worrying I might drop dead on him and thus create a messy paper trail for the drug company and the university, but I was never worried � I felt way too normal for me to think there was a real problem. For my part, tumor cells dying �too fast� seems like a good problem as long as my body can handle processing the toxins which, touch wood, it appears it can. I hope we get a scan in about a month to confirm my hopes that this thing is working well and that we have partial response or at least stabilized response.

Another meeting with the doc today, another dose of Erbitux assuming everything has remained within the tolerances and another week to feel these tumors melting away. For those following and wishing me well, I thank you and I will update again soon. I would like a quiet couple of weeks without any drama � sooner or later, something should just go right I should think. I don't even feel like that's asking for all that much but, as too many of us know, fighting this disease is rarely easy.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Keep up the good fight! Glad to hear there the bus is rolling again.


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
Joined: Dec 2003
Posts: 2,606
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Thanks fornthe update, Hellion! Best wishes for some good tumor destruction.


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
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Posts: 1,275
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Thanks for updating. You are one brave soul. Best of luck, Hellion.


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.
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Dear Hellion,

I hope that your doctor and you are on the right track in thinking that the increased CK levels are a good thing and that it means the tumor is being taken down quickly. I pray that your body may continue to handle this process, so this tumor can be disposed of it in the toilet, where it belongs!

I understand that you're looking for some smooth sailing, as I like to call it. You deserve it! In the wake of all is going on in your life, I hope that you are feeling reasonably well. I wish, I hope, and I pray that this will eradicate your cancer. Here's to smooth sailing and good health in your future! Keep up the fight and remember that we are here standing beside you and behind you every step of the way.

Love and hope 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!
Joined: Mar 2011
Posts: 1,024
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Dear Hellion, what a time you are having. Tumour Lysis sounds good. Glad to hear that your body is coping ok and hope that all this treatment is completed soon with a fantastic outcome.
Thinking of you,
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!
Joined: Jul 2011
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Hellion,
I am glad you are able to continue the combined protocol - hopefully any future drama will be restricted to dramatic tumor reduction. It sounds like you are in good hands with your team. It is great having good doctors, it is even better when our know your good doctors are really rooting for you - and it sounds like this is the case.

Thinking about you and all the best.
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.
Maria #188380 02-23-2015 07:00 AM
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Another Friday, another Erbitux round. My doctor thinks the reduced dosage of the experimental drug is agreeing with me, insofar as my labs are now where they should be. I have my first scan as part of the experiment on the 6th of March and I am hoping to see a Partial Response or Stability reading.

It appears the side effects to this study are manageable, now I just have to hope it's actually doing something -- and if it is, that it KEEPS doing something. Turns out, our little cancer cells are pretty adaptive -- drugs like these hopefully inhibit the cancer's ability to feed even if they mutate -- at least for awhile is the hope.

So, fingers crossed, but I do want to say out loud (lest I appear unappreciative to the gods of luck and fate) that I appreciated having a nice, quiet, uneventful, non "huh, we've never seen that in a human subject" week.

Thanks to my followers and well wishers. I hope you are all doing well and I wish nothing but the best for us all.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Good for you and I hope the next round is met with great success, Hellion!


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
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Right on, Hellion. Hope that things will continue on the right track 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.
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May the gods of luck and fate smile on you:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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BYL719 sounds like a radioactive isotope or something you add into paint. Are you sure they're not just stringing you along and just filling you up with food colouring?

Its just a theory, but you let me know if you start peeing rainbows and the nurses giggle when they see your chart, you let me know ok?

Keep smiling, we're right there with you brother.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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Keep pushing through!!! 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
Cheryld #188699 03-13-2015 04:40 AM
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And so it goes....Still going.

It's been a couple of quiet weeks insofar as I do my Erbitux infusion every Friday and take my magic pill every day and we're hopeful. According to my doctor, my labs look great since we adjusted the dosage and he thinks everything is going well......

Today is the first test of that hypothesis. I have my CT scans today to determine if the known tumors have changed (or at least stabilized). I hate these things. A small part of me almost doesn't want to know. Unfortunately, the overwhelming majority of me DOES want to know and, of course, the drug manufacturer DEFINITELY wants to know. I should have results early next week.

The Erbitux rash, after seemingly abating, seems to have come back -- it's been terrible on my arms. The dry skin, though, is kind of psychotic. I actually feel like I am made of shark skin -- that hard, sharp scaling all over. By way of side effects, this is not as bad as it gets, but I must say I'm not really loving it, haha.

I'll try and check in when I get my results -- work has been rough the past few weeks so I've fallen a bit behind.

As always, thank you for all of the well wishes and support!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Hellion, a quiet couple of weeks is good. I am so hoping that your scans show these treatments are working. That you have positive results from the scans.
Thinking of you,
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!
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Hellion, here's to hoping that you get the results that you would like to have. Best of luck!


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.
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Pat yourself on the back! Chemo and work together is a big accomplishment. Hang in there. The rash will go away at some point, at least that is what gets reported.


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
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Hi, Hellion
my husband found that Eucerin's Aquaphor to be very helpful with the Erbitux rash. Also - you might switch to a gentle soap or body wash. Eucerin makes those, too. Anything with the term 'ultra calming' is good. Also, find a nice hat as we head into summer as you don't want sunburn. I have to follow a similar protocol due to my auto-immune issues.
Best wishes and 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.
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I hope the experiments are working, hang in there. I was reading your thread today. I saw a new treatment they are beginning using stem cells for lung cancer and I see you have lung mets. Have you seen the study?

I just found an article, looks like it is just in the UK for now.

http://www.theguardian.com/society/2015/mar/06/lung-cancer-stem-cell-therapy-trial-uk

Hang in there. I hope these studies move quickly


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
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Updates:

The Erbitux chemotherapy is pretty tolerable overall. It doesn't bring a lot of fatigue and the rash has become more manageable as my body has acclimated. It costs a king's ransom, so without insurance I expect I would be in serious trouble.

We did the CT scans of my neck and chest as per the experimental protocol and received good news -- the tumors they are measuring were down about 30-35% with my oncologists split on the effectiveness being down to the Erbitux or the Erbitux + the experiment. I don't really care -- I'm THRILLED to see a reduction.

So what does this mean?

Well, it doesn't really mean anything other than the fact that my tumors have responded, that the response is considered quite good for this early, and that, as a result, we will stay the course. As my experiment oncologist said, this could keep going positively, it could reverse in a year, it could reverse tomorrow -- we never know. As such, I'm taking this for what it's worth today -- good news and we'll see in about a month what the next scan shows. One scan at a time and fingers crossed that things keep moving in the right direction.

Doing chemo (even this "chemo-light" every Friday is pretty annoying but I really can't complain -- things are, overall, going as well as I can expect. There is always the hope that I finally make a saving throw, but even if those odds are ridiculously high, I can at least say that the process has done some good and that I have bought some good time (probably) with side effects I can definitely live with.

As always, my wonderful wife has sat by my side nearly every infusion day and been bored stiff, but always looking after me. I can say I couldn't have done this without her and she is such a big reason I am doing this. I am lucky beyond words.

As always, thank you to my well-wishers and to everyone that is following and fighting their own fights, cancer related or not. I will check in again when I have more news and I hope that news continues to be good!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Mar 2014
Posts: 286
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Thanks for the update Thom. How are you going day to day? What symptoms are you managing and how are you going with them?


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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Wonderful news!

Your grateful heart will help you through this.

May things keep going in your favor.

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!
Joined: Nov 2009
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Good news. I'm glad one of other of the drugs is working to shrink the tumours:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Jul 2011
Posts: 945
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Glad to hear the protocol is going well and that you are doing well. My husband responded quickly to the Erbitux as well. Hoping for the BYL719 to work in synergy with the Erbitux for 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.
Joined: Nov 2013
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Good news is always good news, what a wonderfully supportive wife you have!


Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
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Glad the Erbitux is doing its job with minimal 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






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Hellion, so glad that you are getting positive results. Hope that things are now on the upswing.


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.
gmcraft #189155 04-13-2015 01:11 PM
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Living, breathing scientific experiment log update:

Really not a heck of a lot to add -- things are stable and I have another CT scan due on or around 24 April -- I will let you all know when I have some results.

I am both excited and frightened of these scans. My last scan showed things are working well, so I'm excited, but one must always be mindful that things can turn and in a hurry so I'm a bit frightened as well, haha. Either way I have about 2 weeks before I have to really worry about it.

Skin rash has settled down considerably -- my experiment doc is happy that my body is, generally speaking, adapting to the Cetuximab. I have no symptoms from the lung mets, although I am probably some time away from that.

So, really nothing to say but I did promise to check in more and I hate to disappoint my fans -- I'm really only up on this stage today because of all of .... wait, that's from my grammy acceptance speech, should I ever win one.

I'll post again when there is news but for now, I suppose no news is good news!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Mar 2011
Posts: 1,024
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No news is indeed good news. You are sounding very upbeat which is great. All sounds positive. I am keeping everything crossed for further good news.
Keep the faith,
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!
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Hellion, it is wonderful that you are keeping your sense of humour. John has been referred to as a "famous guinea pig, and also "Magnet Man" at the hospital ( both references to the new procedure he had for opening up his esophagus). You are making significant contribution to the advancement of science. You should be very proud of yourself. Good luck!


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.
Joined: Nov 2009
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Cheers from one of your fans:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #189378 04-29-2015 09:19 AM
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You are all too kind!

So we had our second scan and the results are in. I am stable. There is no further reduction but neither is there any growth in the tumors they are monitoring, at least within the margin of error. My doctor, is relentlessly enthusiastic and is quite happy with that. He enjoyed pointing out that as the tumor is in my lymph nodes, there is really no way of guaranteeing if they will ever shrink all the way anyway.

Regardless, the results are good -- I am partial response and stable in my experiment scans. Of course I would have preferred further reduction, but I did say I would be happy with stable so I will stick to that.

Meanwhile, I continue weekly Cetuximab treatments and daily magic pills, both of which seem to be agreeing with me overall, insofar as the rash has subsided and the dry skin is at least manageable even if it is sometimes a bit irritating.

All and all I have little to complain about, at least for the near term smile. Through it my wonderful wife and best friend continues to sit and watch, wait and learn, and ask all of the questions I always forget. Without her I would be in serious trouble, hehe.

Thanks to all for the well wishes and high hopes!!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Aug 2011
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I am happy to hear that things are stable. I recall that it took a couple of years for my nodes to shrink in size, so hopefully your optimistic physician is correct!

I love the detailed updates and for you sharing you journey of hope!

Best wishes!


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: Oct 2012
Posts: 1,275
Likes: 7
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Hellion, stable is good, though reduction may be better. Even if it slows down the growth of the tumour, it is good. Other new drug trials will come along and as long as you are in relative good condition, you can be a candidate for them. Keep well and hi to your wonderful wife.


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.
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Hellion, that is some wonderful news! Keep on doing whatever your doing.


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
Joined: Jun 2007
Posts: 10,507
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Great news!!! Sounds like your doctor is watching you closely. Hopefully everything will remain stable for a long, long time or better yet to be reduced.

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
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Ditto! So thrilled to hear no bad news. Hang in there and let's hope the next time, you hear it has shrunk!

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
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Glad to hear your news. Wishing you well:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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That's great!!! wink 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
Cheryld #189550 05-13-2015 04:38 AM
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So by way of update, they decided last week that I can now see the doctor every two weeks instead of every week which is an excellent turn of events! This means that my labs and rashes and overall general generalness are doing well enough that they don't feel the need to watch me as closely as they have been.

It was, of course, a change for me. I am a creature of habit and I become disconcerted when things change, but nonetheless it was good news. I see the doctor this week, but I don't have another scan for 4 weeks.

Overall everything is fine, I am happy and healthy (well, minus the cancer) and we continue to be excited by the potential of this clinical trial.

Wishing everyone the best, more updates to follow!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Always beautiful news to hear such amazing progress! Keep on doing what you are and may your rash dash, never to return again!


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
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Hellion, all this is good news.


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.
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And so it goes.....

The latest update is in. I had a new scan on Friday and the initial results are not great. It appears that there is progression, albeit not dramatic. We will be discussing our next options on Friday. It would appear we will be looking at plan B, whatever that means.

On the upside, my oncologist did indicate he had a couple of plans up his sleeve and that this one what just the first, so we are still hopeful. As my wonderful wife just said minutes ago, we don't know what we don't know and we will see what the next options are.

Thanks all, I will keep this more up to date as we may now be making changes!!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Hi Hellion, I was just going to write this response to your post when I saw the flashing envelope. Thank you for keeping us in mind. At our end, we are seeing our MO tomorrow for results of the first scan, so I will post when I know.

During John's first clinical trial, the MO allowed him to continue with the trial even though it showed progression in the first couple of scans. I think it was to give the drug some time to work.

This time around, before John even started on the second trial, the MO mentioned the new trial which has since been posted under the thread "Second Clinical Trial" on this forum. It is MEDI4736 in combination with another drug. This may well be John's next trial if the present one does not work. You may want to go to that thread and read up on it if you are interested. Our doctor, like yours, has things all figured out and seems to have some kind of master plan.

Your wife has hit the nail on the head: indeed, we don't know what we don't know and there is no point fretting about it.

By the way, the trial drug John is presently on is Selinexor (phase 2). If that is what they are going to offer that to you, I would be most happy to share our experience with you.

Keep well,

Last edited by gmcraft; 06-08-2015 10:16 AM.

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.
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I'm glad to hear you both are getting options. That is very exciting to me. The only trial available when I went through treatment was Erbitux as a prophylactic treatment for lung mets.

Best wishes for you two.


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
Joined: Feb 2005
Posts: 118
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Hi Hellion,

As my MO told me when I was beginning clinical trials, "If this does not work for you, there is always another lily pad to leap to, Froggy." (Although my name isn't Froggy.) While not technically true, there were several trials for my lung mets before I moved on to other treatment. And today there are more and better. All the best to you and your wife.


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.
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Thank you for sharing your updates with us.

I hope that your oncologist has some good things up his sleeve for you.

As I am, you are fortunate to have a great partner in your spouse who no doubt helps keep you going.

Here's too kicking cancer's butt!

Love and strength 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!
Kerri #189916 06-12-2015 08:24 AM
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So....

Met with our MO today and I will be demitted from the current trial -- the cancer has gained back everything the trial had won and there is, therefore, no meaningful reason to continue it.

I am eligible for an immuno-therapy trial which would be a 50% chance to receive a phase III immunotherapy drug that works very well when it works, but only works some of the time. the other 50% would be Docetaxin (or however you spell that) with the hope that I could be eligible for a phase I immuno-therapy trial that will begin later in the year.

I am still low volume and he feels there is not any reason to rush in or panic -- he has even given me the option of taking treatment time off and then starting up again in a few months or even more. I'm not really comfortable with that, given the sort of person I am, but I see where he is coming from.

For now, we have a few weeks off while we consider our options and think about what we would like to do. Overall I am still hopeful, I really am, but I am feeling a little bipolar today -- moments of high hopes, moments of despondency. I still can't accept that this can't be beaten, at least into remission, so I am still assuming it's all going to work out!

Meanwhile, I work, we live, we laugh and we cry a bit. I am so lucky to walk through the world with such a wonderful partner -- she's shaken up a bit and feeling a little helpless I think, but I refuse to quit if for no other reason than because I can't imagine walking without her smile.

Hope everyone else is doing well -- I will update in a few weeks when we have made a decision and are on a new path!!

The Hellion

Last edited by TheHellion; 06-12-2015 08:48 AM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Nov 2009
Posts: 644
Likes: 1
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You are a real hero, Hellion, and I hope you stay "low volume" for a long long time with immunotherapy as a ray of hope for the future.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Aug 2011
Posts: 596
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Dear Hellion,

I am truly sorry that the trial has come to an end, but I am hopeful that you have other possibilities. May those possibilities become wonderful realities!

I admire your positive, fighting spirit. Your words that you use to describe your love of life and family are very touching and well-said. I consider myself to be very fortunate to be with a wonderful partner and family, as well.

I wish you some peace and emotional comfort as you face the coming times.

Keep on truckin'!

Love and hope 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!
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Posts: 1,275
Likes: 7
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Dear Hellion,

A break gives you time to recover from the treatment and regain your strength. If it is a slow-growing tumour like John's, then a few weeks makes little difference but I am not sure about a few months. There are a lot of immunotherapy trials it seems, so hopefully one of them will work for you. If you are going into a phase 3 trial, you may want to find out if it is a double blind test with a control group and a test group.

Keeping you and your wife on my mind always.


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.
gmcraft #189946 06-15-2015 04:14 AM
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Thank you all, as always, for you well wishes.

I can't imagine doing nothing for very long, even as passive as the entire process unfortunately is for us. We meet with our other MO tomorrow (my actual, not science experiment, MO) and we will get her opinion as well and then make a decision. Probably we will be going with the study -- there aren't currently a lot of better options. Should it fail, however, it is another window closed and I will admit that that frightens me a bit. It's starting to feel a little bit claustrophobic in here.

The break will be nice. Generally the last study wasn't too difficult on me, but I am tired and I won't be sorry to let my skin heal up a bit from the Cetuximab. It wasn't terrible, but my skin is very dry and I have lots of annoying little cracks and splits on me fingers and feet.

The next round will probably be more difficult so it is best to gather strength I expect.

I will let you all know where we are when we know more!!

Thank you all for your support!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Oct 2012
Posts: 1,275
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Hi Hellion,

Our MO who is in charge of drug development at our hospital says, 'there is always something.' She refers, of course to trial drugs. If John's trial drug doesn't work for him this time, the next trial she has in mind requires the patient to have had three lines of treatment-- three previous chemo treatments. So john does not even qualify for that unless the present trial doesn't work for him. One window closes but another opens, you see.

The most important thing I feel is to keep up your weight and stay in reasonably good shape for the next trial. Please don't let things get you down too much.


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.
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Best of luck... and thinking of you. I am like you I tend to want to move on something... waiting around is not my way of doing things... ;o)

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
Cheryld #190400 08-03-2015 09:04 AM
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OK,

So it's been, well, about 6 or 7 weeks it looks like, since I updated. It has been eventful but if I'm honest, the real reason I have been delayed is I have been trying to pretend I'm not a cancer patient for a bit, whilst I still can!

So, by way of update. When we left off I had been demitted from my first trial, and we were considering what to do for the next trial -- waiting a bit, doing nothing, standard of care or an immunotherapy trial. We decided on the immunotherapy trial using Pembrolizumab (I think that's the spelling) - a PD-1 inhibitor that has been approved for use with some cancers and is being studied for use in head-and-neck cancer. I had a 50% chance of getting the trial and a 50% chance of getting the standard chemo but to do so I had to get another biopsy.

The biopsy was relatively uneventful, but in performing it, the pulmonologist noted that one of the tumors has begun to get nearer my airway -- my MO thinks this may be contributing to an aggravating cough I've had the last month -- I'm hoping it's just an aggravating cough. Either way, he changed his mind and decided we need to move quickly and so two weeks ago we started the trial and I was selected into the experimental group which is good news -- I am now getting an infusion every three weeks for one of the most exciting drugs in the cancer-fighting game. Unfortunately, though it works quite well when it works, it's about a 25-30% chance that it will work. We are, of course, hopeful that I finally win a damned dice roll.

Side effects are, after one infusion, non-existent except for the possible chance that I have some low grade flu-like symptoms on some days -- I'm not even sure I've had that yet, though, since that could just be feeling a bit tired or achy on a given day. At any rate, I get my second infusion this Friday and a scan in about 6 or 7 weeks, I think.

So, I am alive, as well as can be expected and hopeful for the new drug. Should it not work, however, I am beginning to think we may be running our of options -- for now, however, I'm trying quite hard not to think about that.

My wife continues to support me, drive me around, sit through lots of waiting rooms and generally keep my spirits up. Generally, I am maintaining what I think is a good attitude, but I must confess I have good days and bad days. As we all know, this sucks.

I hope everyone is doing as well as can be expected -- Now I'm on a new trial, I will try to keep this better updated.

Tidy.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Nov 2009
Posts: 644
Likes: 1
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Pembrolizumab sounds exciting and I'm crossing my fingers that it will work for you. I know it's hard to keep that good attitude up although in itself a good attitude helps you cope. You and your wife are doing admirably.

We could write a book about waiting rooms, couldn't we?

The very best of wishes.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Oct 2012
Posts: 1,275
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Hi Hellion, is this a phase three trial? They are sure making progress with the immunotherapy trials. Our experience is the side effects only appear after a few infusions, but even then it is mild. Good luck with it.

I have knitted I don`t know how many pairs of socks in waiting rooms since John started his treatments. Does your wife knit�


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.
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Best wishes for success on this trial, Hellion.


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
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Hugs and blessings to you.. keep fighting.


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
Cheryld #190698 09-09-2015 05:12 AM
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OK, another update.

This week we will be getting our first scan since the beginning of the trial. It sounds like there is a 25% growth margin (meaning the tumors they are measuring must have grown less than 25%) in order to continue. It takes some time (apparently) for the body's immune system to start to do its good work on the tumors.

For myself, I am a bit up and down. The nagging cough has persisted which I find discouraging but the medicine is very promising and my overall health seems to be pretty steady which I find encouraging. I have had three infusions of the trial so far and the side effects are quite minimal so that is also promising.

I can't lie -- if this trial doesn't work I will be a bit discouraged so I am trying to stay very hopeful. My doctor continues to love the overall way I look although he is on me about gaining a bit of weight -- I'm having some trouble weaning myself from the all day eating I did after the radiation last year. Fair cop on his part, I need to drop a few pounds now smile. I just hate when options close out.

My wife (whom some of you know as the most amazing woman in the world) have started a non-profit musicians' haven for cancer patients, survivors and caregivers. The idea is to put together a couple of ensembles of people that understand our issues -- it is difficult to be in a band with people that don't understand chemo-hangovers, doctor's appointments, extended absences, etc. We decided to put together a studio where people could come and play, organize and teach, learn and practice without any pressures. We are hoping it will be like a support group for artists, but without having to talk or think too much about cancer. That has taken over our basement and is keeping us busy. It's a small group so far, but hopefully growing, and I'm excited to have that to look forward to on the weekends.

Hopefully everyone here is doing well -- I am not as active as I was - I continue to try and behave as though I am not a cancer patient. I will update again when I have news!

Cheers,

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Dear Hellion,

I'm glad to hear that things are overall going well. I am also very hopeful that your trial will work.

I love the idea for the support group for artists w/ cancer. It must be very therapeutic! Well done!

Keep on chugging,
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!
Joined: Oct 2012
Posts: 1,275
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Hi Hellion, the update sounds promising. The thing about immunotherapy is that there are minimal side effects. Brian Hill told me it's because it is the body's own resources that have been brought into play, rather than some substance that is introduced to fight whatever is in the body. John has just had a CT scan and we should find out about the results next Monday. Your wife is amazing -- I wish I were living close to you guys so I could be part of the group, but unfortunately, I am in Canada frown It is gratifying to hear that you are doing fine. I hope you get good news next 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.
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Thanks for the update Hellion. This is new and still uncharted territory, but with so much promise. I do feel this is the way of the future and I am so hoping for good results for you.
I wouldn't worry too much about the extra pounds. I am very much of the opinion that weight loss is bad for anyone who has had a cancer diagnosis .
Enjoy your music sessions. Great idea.
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!
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Enjoy your music and let take you away from cancer for awhile. Keep up the good fight and hope all goes well for you. 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 !!!
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I hope everything is going well for you. I am on the beginning stages of possibly the same journey as you as I have lung mets and am on about my 4th week of Erbitux. I have been and will be 'making sure I learn from you and everyone else to make the right choices as I go along.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
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Good day all!

I apologize, I know I have been silent for a very long while. To be honest, I have had some bad luck and decided the best way to deal with it was to just armor up. Simply put, my last trial was another bust, which, in and of itself, is not a major problem -- these immunotherapy trials are very hit and miss. We immediately started looking at another, better immunotherapy trial. During that screening, however, they discovered another new problem. The cancer had spread to my brain, or at least to the membrane between the lobes of my brain.

This is not as hopeless as it seems, as the cancer does not appear to have penetrated the brain-blood barrier, but it definitely took a lot out of me. The solution was to administer localized radiation to shrink the tumor such that I can get on the immunotherapy trial we hope to start tomorrow. Meanwhile they also applied radiation to the worst of my lung tumors to reduce some of the cough I have been suffering from since late summer.

The cancer has also spread to my bones, at least my skull and possibly elsewhere, and I pretty badly pulled some back muscles from coughing which has made moving around difficult. All of this really just means I've had a pretty poor couple of months.

Tomorrow we start our new trial and I am, despite everything, still hopeful. My poor, long suffering wife has had to sit through all of this and I have been nothing but a lousy patient through this process -- I'm down, self-pitying and generally lacking in energy. It would appear that this is my right, but I am remembering now that my attitude affects both of us and I don't want her to have to walk such a sad path, so I am recommitting to getting my courage, energy and strength back for another round with this thing.

For what it's worth, never, ever give up. I certainly don't intend to myself although I can say it is difficult sometimes to keep a good attitude in the face of adversity.

I will try and update you guys regarding this trial. Of all the trials, my team are most excited about this one -- it is a dual immunotherapy that has proven to be quite effective in other cancers and is really very exciting stuff. The side effects appear tolerable and I will try to report them accurately.

I hope everyone else is well. We will keep fighting, all of us, because it is what we must do!

Thank you all as always for your kind wishes and thoughts!!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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[quote=someguyjeff]I hope everything is going well for you. I am on the beginning stages of possibly the same journey as you as I have lung mets and am on about my 4th week of Erbitux. I have been and will be 'making sure I learn from you and everyone else to make the right choices as I go along. [/quote]

someguyjeff,

I am sorry to hear that you are on my path. I will try to report my trial results as I get them - I will have to look up the names of my trial drugs for you and post them here - I think it is MEDI4736 in combination with Tremelimumab. My last trial was KEYTRUDA which did not help with my cancer (although that does not mean it may not work with others).

I wish you the very best of luck, mate - my only real advice, unfortunately, is so terribly clich�d - try to stay strong and positive and never, ever give up!!!

Let us know how you are doing!!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Aug 2011
Posts: 596
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Dear Hellion.

I'm very saddened to hear of your news regarding the metastasis. I sincerely hope that this next trial brings some promising results.

You will be in my thoughts and prayers.

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!
Joined: Jan 2013
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Hellion,

I'm really sad to hear the news of the spread and poor response to the trial. It sounds like you are moving forward with another option. It must be very difficult to remain strong and hopeful but that is what keeps you looking forward. Best wishes for a good trial.


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
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You are an inspiration to keep fighting. I am sorry to hear of this latest news. I pray that the next trial has some great results. Thank you for all the information you provide as it has helped me find my balance and know there are options for myself.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
Joined: Mar 2014
Posts: 110
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So they finished rads to my back yesterday. This was some spot work t ease the pain I've had for several months. Things should start improving now, but because they radiated through my stomach I've felt pretty awful the last few days.

Otherwise nothing to report. I get the second infusion in two weeks so we just keep our fingers crossed and hope that this is doing the job. We have the first scan in about five weeks, I think.

Hope everyone is well!!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Hellion, are you nauseous? Did they give you Ondansetron? Make sure you keep up the fluid intake even if it is a small dose of radiation. Rest up now. I am cheering for you in this corner.


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.
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I am so glad you're on the new trial. I was asking my doctor about getting on one with MEDI. Please keep us updated with the symptoms and successes. I also may try Opivido as my doctor has a patient doing well with that for over 9 months. I know these are all shots at the dart board but some could be promising.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
Joined: Jan 2013
Posts: 1,293
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Glad to hear new treatment plan is underway. These new therapies are so promising, let this be one more positive result to add to the trials. Thanks for keeping us current. Good luck! 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
donfoo #191659 01-30-2016 07:51 AM
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donfoo, someguyjeff,

Thank you for your well wishes - we are so hopeful - the entire team is just so excited. someguyjeff, this is why you have to keep hoping and fighting even on the worst days - because someone will be the last person to die from this, which means someone will be the first person cured. Where we fall in that spectrum is how we will get to the cure and either one of us, both of us or all of us could be the ones that are cured. Never, ever stop believing.

Gloria, thank you for your kind thoughts. I am taking lots of anti nausea medicine but I have a dirty secret -- the unstoppable, unflappable, indefatigueable mighty, mighty Hellion has a VERY sensitive stomach. The smell of the radiation oncology center makes me queasy. That's our secret, though, I don't want my kryptonite getting around smile. I'm already feeling better - two mornings radiation free and I'm starting to hold down protein drinks and some solids. I whine (a lot as my eternally patient partner in life sadly knows) but I do always seem to pull through smile. I thank you for your concerns, though, as it means so much to me to know that this community always supports each other.

A special thanks to my aforementioned partner - my fantastic wife. She drives me everywhere while I need the walker, buys me anything and everything that may help me eat, makes me as many things a she can to get me to eat and hold down food, and listens to me whine, complain and moan without ever showing the toll it takes on her. You guys, I wish I could think of some way to balance the scales but I am far too far in debt now smile.

Thanks for listening!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Jun 2007
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I dont always comment but I read every single post and have been keeping track of this thread. Wishing all the best to everyone who is fighting, struggling and helping with trials. Thank you so much for being so unselfish by coming back to post updates, good and bad. These words will be here for many, many years helping future patients and caregivers until, as The Hellion put it... someone is the last one to die from this.

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
Joined: Mar 2014
Posts: 110
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Well said and thank you for you kind words, support and patronage wink. I intend to retread these words in a few years and laugh like a hyena because I'm still here to do it heh heh.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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I also don't comment all too often, but feel the need to say that I really admire your compete level - your sheer desire to get past this & your positive outlook. Really hoping to see some improvement for you.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
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Hi Hellion,

I also read all your posts and appreciate the updates. Don't have any advice other than to keep fighting! Wishing you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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Another update,

Received the second infusion of the two medicines last Friday and so far, so good. There are some potentially dangerous side-effects but up to this point I have escaped them (touch wood). The biggest fear is debilitating, dehydrating diarrhea which can hit up to about 50% of patients. Nice to be on the right side of a coin flip for a change smile.

I did have a terrible couple of weeks of nausea, perhaps due to radiation, perhaps due to the treatment - no one is really sure. I was unable to eat or hold down anything for about half of the last two weeks. Fortunately, through much experimentation, they seem to have hit on a good combination that is working.

I will warn you all, however, that the fatigue associated with this treatment, at least for me, is pretty staggering. I need a nap after doing almost anything and I think I could pretty easily sleep/doze/zone for about 20 hours every day. They are working on that, as well.

Additionally, although this may be unique to me, there has been associated a terrible loss of appetite - it is hard to motivate myself to eat - it's like a job.

So....

There is the update. Things are otherwise fine. We get a scan in four weeks and that will be our first of two markers - if I do not show response by the second one, I'm off of the trial so let's all please keep our fingers crossed for me unless you really don't like me in which case I would ask that you not actively root against me smile.

I hope everyone else is faring well, or at least as well as can be hoped.

Good luck to us all - remember - we must keep fighting if ever we can. I have had days where I forget that, so sick am I, but I have such a great friend to always remind me - yeah, you guessed - my wonderful wife. No matter how low I get, she manages to find just a bit more energy and encouragement to feed back into the system.

Cheers, all!

The Hellion

Last edited by TheHellion; 02-15-2016 05:55 AM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Jun 2007
Posts: 10,507
Likes: 7
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Thank you for continuing to keep us updated. Your posts will help many others in similar situations.

You have hundreds of friends here cheering you on. Many, many read your thread and dont comment.

Wishing you all the very best 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
Joined: Jul 2011
Posts: 945
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Posts: 945
Glad to hear from you, Hellion - and hoping for good results with the scan. Since the treatment is tiring you out, we'll assume that its REALLY knocking the cancer on its butt.
All the best,
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.
Joined: Apr 2015
Posts: 91
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Apr 2015
Posts: 91
Have been reading your posts. I hope all goes well for you. I am pulling for you! Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Dear Hellion,
You are an example of true strength and courage. Your tenacity is admirable. As Maria said, perhaps your profound fatigue is a good sign. May your appetite and vigour return soon. Thank you for keeping us posted and being a trailblazer in this new process fighting cancer. May the force be with you!

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!
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hello Hellion,
I always read your posts. You too , are forging the way of the future for those that must follow.
I am standing firmly in your corner, rooting for you. All my fingers and toes crossed for a very positive outcome. You and your wonderful Wife have my admiration.
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!
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
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Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Hi Hellion,

Glad to know you are not suffering from diarrhea, not so much because of the diarrhea itself but the attendant problem of dehydration. As for the lack of appetite, have you tried watching cooking shows to help make your "job" easier?

Hang in there, dear friend. I am rooting for you. Much credit to both you and your lovely wife.


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.
Joined: Dec 2014
Posts: 55
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Dec 2014
Posts: 55
I am praying and rooting for you!!! Thank you so much for these updates as most likely soon, I will be attempting my own journey of immunotherapy trials and tribulations. Ill find out soon if the Erbitux is still working. Two weeks ago I spent a few days in the hospital for another recurring neck infection and immediately after my Erbitux infusion last week I went on a solo trip driving over 4000 miles round trip with a utility trailer to load up some of my parents belongings in order to help them with their move. Did all this while on IV push antibiotics through a PICC line, done in the cab of my truck at rest stops or truck stops. Lucky I never was hassled by the cops thinking I was pushing some other drugs through my veins. ha I also found one of the titanium screws that should be in my jaw holding something in now sticking out from under my chin a few millimeters while i was driving. seems that hardware has failed and is being pushed out of my body. Will need to have that looked at soon. I am trying to not let this slow me down too much. There are days upon days that I am stuck on the couch, but the people here show me so much strength that I have to give it my all when I can. Back to Erbitux infusion tomorrow and hope for the best. Thank you Hellion and Thank you everyone else who is fighting or taking care of those who do.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
Joined: Mar 2014
Posts: 286
"OCF Down Under"
Gold Member (200+ posts)
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"OCF Down Under"
Gold Member (200+ posts)

Joined: Mar 2014
Posts: 286
We're right there with you mate.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Dec 2014
Posts: 55
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Dec 2014
Posts: 55
been a while since we've heard from you. I pray everything is going ok. Feel free to message me on here and/or ask for personal ways of contact. I am close to right behind you. Keep up the fight!!!


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
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