Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Joined: Jan 2013
Posts: 4
dramz Offline OP
Member
OP Offline
Member

Joined: Jan 2013
Posts: 4
Thank you guys for the overwhelming responses. I have a lot of reading to do and I value everyones opinion so thanks for the posts. I'll see what the board recommends and make an informed decision. Thanks again.


35 year old Male, excellent health minus this pesky cancer
Stage IV SCC of left tonsil and multiple nodes, T1 N2B M0 HPV+
01/07- two nodes removed for biopsy
01/17- tonsillectomy of both tonsils and primary tumor
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Just wanted to say Zenda - so glad you are doing well! You are an inspiration.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Jul 2012
Posts: 3,267
Likes: 4
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 4
Welcome. There was a study with Cisplatin combined with or without Erbitux RTOG 05-22, which MSKCC mentions that combining the two did not prove posituve, if I understand it right. They also mention in their letter to the Journal of Clinical Oncology, posted below, that they recommend that Erbitux should not replace Cisplatin, outside clinical trials, as mono tretament anytime soon, until the direct comparison in RTOG 1016 phase III study is complete.

ECOG-E1308 is using Induction chemo, and substituting platinum based chemo with Erbitux for CRT. Dana Farber has a phase II study, NCT01221753, with Induction chemo, and low dose carboplatin plus Erbitux or full dose Carboplatin with Erbitux, I guess depending on Induction results.

I hope this helps.

http://jco.ascopubs.org/content/early/2012/11/30/JCO.2012.46.9049



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






Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Hi, Dramz
Are you (or have you ever been) a smoker?
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: Jan 2013
Posts: 1,292
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,292
Likes: 1
Paul,

Thanks for the links to the studies. I can only chew on a couple before having to take a break with a splitting headache :-)

Good thing cetuximab was not mentioned in any of my treatment options. If I had not read up on this before I might have been inclined to go that way. that said, one study does not make a new standard of care but to me the risk/reward wouldn't justify it as it seems the primary outcome is to reduce side effects without reducing efficacy. In fact, it appears worse outcomes are linked to using cetuximab rather than platinum concomitant with RT.

fyi - it has been mentioned using cisplatin during CRT but changing to carbo at some point, i think.

Last edited by donfoo; 01-25-2013 01:48 PM.

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 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Paul

Yes, thanks for weighing in on the Erbitux debate. We had hot and heavy discussions here when I first started reporting that the efficacy of Erbitux had been exaggerated in news stories and articles about Bonner as well as when the FDA approved it for metastatic head & neck cancer. The discussions went nova class when I first found those reports on Erbitux not playing well with HPV in terms of recurrence.
Hard as it might be for you to imagine, I was quite emphatic if not outright tactless about Erbitux being worthless and the threads got somewhat caustic. Funny, it was mostly people who never had Erbitux themselves nor their patients (if they were caregivers) who defended Erbitux the most.
I did feel vindicated when my RO at my CCC told me he will no longer prescribe Erbitux until the recurrence rates issue is resolved.

DonFoo
Yes, Erbitux did sound great and according to is manufacturers and sellers, it still is. Very tempting in that it does shrink a tumor quickly but apparently leaves the nastier bits behind to come back unlike take no prisoners platinum.
Charm


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

Passed away 4-29-13
Joined: Jan 2013
Posts: 4
dramz Offline OP
Member
OP Offline
Member

Joined: Jan 2013
Posts: 4
Paul,
Thank you for the links. I'll continue reading but I think I'm shying away from the Erbitux option. Not sure yet what the treatment entails or in what combo it might be used, but I'll make sure to do my research. Thanks again.

Maria,
I smoked as much as teenage boys smoke in high school but it was minimal. At least I was cool... smile



35 year old Male, excellent health minus this pesky cancer
Stage IV SCC of left tonsil and multiple nodes, T1 N2B M0 HPV+
01/07- two nodes removed for biopsy
01/17- tonsillectomy of both tonsils and primary tumor
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Dramze

Back to your situation:
Here is a tip that everybody agrees with (at least so far):
next blood test, ask your doctor to order a TSH or Thyroid hormone test. Understand that you are asking the doctor to do nothing more than check two more boxes on blood test form:
866X (T4 Free) and 899X (TSH). It's extremely important to get the actual TSH number that you have now before Radiation.
Again, my tip is from my personal experience, not a clinical trial but IMO just as valid
While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5 or a 4.5 as okay even though endocrinologists who went to Medical school the 21st Century conbsider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill" (levoxyl), I am finally warm again. Plus my energy is back.
Even better if post radiation, your blood test shows you have the same or very close TSH level. But without a pre radiation test, then it's just wild guesses on even the best doctors' part.
Charm



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

Passed away 4-29-13
Joined: Jan 2013
Posts: 4
dramz Offline OP
Member
OP Offline
Member

Joined: Jan 2013
Posts: 4
Thank you Charm. I'll make a point to ask for this test prior to radiation beginning to establish the baseline.


35 year old Male, excellent health minus this pesky cancer
Stage IV SCC of left tonsil and multiple nodes, T1 N2B M0 HPV+
01/07- two nodes removed for biopsy
01/17- tonsillectomy of both tonsils and primary tumor
Page 2 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndlors01, Kval, iMarc845, amndcllns01, Jina
13,107 Registered Users
Forum Statistics
Forums23
Topics18,175
Posts196,946
Members13,107
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5