|    |       Joined:  Jan 2013  Posts: 4    Member   |      OP      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: 5,264 Likes: 5    "OCF Canuck" Patient Advocate (old timer, 2000 posts)   |           "OCF Canuck" Patient Advocate (old timer, 2000 posts)    Joined:  Dec 2010  Posts: 5,264 Likes: 5  |    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)   |           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)   |           "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: 1,294 Likes: 1    Patient Advocate (1000+ posts)   |           Patient Advocate (1000+ posts)    Joined:  Jan 2013  Posts: 1,294 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 12:48 PM.
       
Don Male, 1955 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
  |      |       |               |    |       Joined:  Mar 2008  Posts: 3,082    Patient Advocate (old timer, 2000 posts)   |           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    Member   |      OP      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...           
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)   |           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    Member   |      OP      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    |      |       |                
            |   Forums23  Topics18,280  Posts197,206  Members13,413   |  |   Most Online2,371 Sep 11th, 2025   |       |         |      |