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DuffyMo #150976 06-17-2012 10:36 PM
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Yes cetuximab is the same as Erbitux I beleive ... smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
KP5 #150977 06-18-2012 05:54 AM
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Kathy

Yes, Erbitux is just the brand name for the chemical name of Cetuximab. I would not worry about Kevin on this score since he did get other chemo.

As far as I can tell, Erbitux is fine when given in conjunction with platinum based chemo (cisplatin, carboplatin) or others chemotherapies. It just does not do the trick for BOT cancers all by itself.

I too wanted the least toxic chemo so I gambled and lost.
I just want others to know they are gambling because my wife and I did not since none of the studies were out
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
DuffyMo #150978 06-18-2012 05:56 AM
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One of the best minds in HPV+ OP cancer research, Dr. Maura Gillison, is one of the PI's of the RTOG 1016 clinical trial under discussion. Of course, anyone can be wrong, but I think she's a pretty smart cookie.


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.
DuffyMo #150980 06-18-2012 06:12 AM
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Charm notes:

"As far as I can tell, Erbitux is fine when given in conjunction with platinum based chemo (cisplatin, carboplatin) or others chemotherapies. "

Actually, the early results of RTOG 0522 (Cetuximab added to Cisplatin) have not yet shown an increased survival benefit. However, it's too soon to tell if the HPV+ participants have a real benefit - less of a risk of recurrence (especially for never smokers) and increased time to recurrence.

One of my doctor buddies, a pediatric oncologist, told me that it is important to remember, that adding drugs to a protocal may show increased benefit, but sometimes it just adds toxicity.

Another important point, when looking at these study results, it to verify whether they are actually statistically significant or not, or simply results presented as interesting and worthy of further study, particularly in single-institution retrospective studies, or phase one or two studies with small numbers of people. These studies will often include a statement such as 'although this result was not powered to reach statistical significance...'. This means the invesigator can see a trend, but if their sample is skewed (due to small numbers or test design)their result are not representative of the population as a whole.

I don't expect this is making anyone feel any better about anything, but it points out that you have to have confidence in your team (who had darn well better have a decent grounding in reviewing clinical trial results) and to seek a second and even a third opinion if there is any question in your mind about the treatment protocol.

Last edited by Maria; 06-18-2012 06:31 AM.

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 #150986 06-18-2012 08:42 AM
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Maria

Thanks for pointing that out. While I am negative about Erbitux, I wanted to be fair. You make an excellent point about statistics and studies also.
I won't be repeating that line again unless the results are in from the trials saying that it is so. The centuximab certainly did add toxicity to my radiation dermatitis. It will be good to see the results of those clinical trials. I agree with your assessment of Dr. Gillison.

Charm



Last edited by Charm2017; 06-18-2012 08:45 AM. Reason: typos

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

Passed away 4-29-13
DuffyMo #151000 06-18-2012 05:42 PM
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Thanks to everyone for your responses and support. I know you all can identify with our anxiety.

I understand Charm2017's abhorrence of Erbitux/cetuximab for obvious reasons. I wish I could find the reference he quotes in the beginning of his post "Erbitux and HPV do not play together well" because that is the only clear reference I've been able to find that �suggested that HPV-positive patients treated with Cetuximab plus radiation have worse outcomes than patients treated with cisplatin and radiation.� I have searched quite a bit and was never able to get more information on that.

Our R.O. clearly does not believe that. Once again today my husband specifically asked our RO why my husband should enroll in the clinical trial (RTOG 1016), and the RO said �if it were him� he would enroll and hope to get the Erbitux arm. The RO WAS aware of the study (ROTG 0522) with the negative results of the additive effect of cetuximab on top of radiation/chemo. We both have confidence that the RO is keeping up with the literature around this issue.

We also feel we have to consider the possible long-term effects from the cisplatin vs. the cetuximab. My husband has to make the ultimate decision whether to enroll or not. Of course, even if enrolled, he may not be chosen for the cetuximab anyway.

As far as a PEG, we discussed that specifically with the RO, and his belief is that you should not start with one. He told us about the importance of keeping up the swallowing function, and his standard is to not use a PEG unless necessary. I�ve read other posts about how people�s PEG�s were �life savers�, so I do have to admit I�m a little wary on that.

So much to learn with so little time...


Caregiver & Wife to Husband age 61 Dx 06/08/12
Stage IV BOT Cancer T3N2cM0
Non-smoker, light drinker
Tx ended 8/27/12. 35 doses rad + 2 Cisplatin doses 3 weeks apart. PET/CT scan 10/24/12 - NED BOT. 2 small hot spots, one one on each side in lymph nodes deemed to be result of Tx at this point.
DuffyMo #151001 06-18-2012 06:39 PM
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You refer to your Ro all the time. Do you have a medical oncologist? That is who made all our decisions on our chemos. The side effects of Cistplatin aren't really life threatening. I would rather have my husband alive with a hearing aide. Have you by chance gotten a second opinion. I sure would, from an MO who has lots of experience with OC. Just my thoughts. Blessings with whatever is decided.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
DuffyMo #151004 06-18-2012 08:18 PM
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Duffy

We are not doctors and you have to trust your doctors. As for those elusive references. The news article from OCF that I excerpted Dr Jimeno's comments was back in Oct 2011, here is the link
article with Erbitux excerpt
There were two footnotes in Dr Jimeno's portion:
#17 re HPV low EFGR #18 worse outcome
[quote]17. Kumar B, Cordell KG, Lee JS, et al. EGFR, p16, HPV Titer, Bcl-xL and p53, sex, and smoking as indicators of response to therapy and survival in oropharyngeal cancer. J Clin Oncol. 2008;26:3128-37.

18. Koutcher L, Sherman E, Fury M, et al. Concurrent cisplatin and radiation versus cetuximab and radiation for locally advanced head-and-neck cancer. Int J Radiat Oncol Biol Phys. 2010 Oct 13. [Epub ahead of print][/quote]

Like Maria says, Dr. Gillison is top notch and if she is behind a clinical trial, I would not question it.
Charm

Last edited by Charm2017; 06-18-2012 08:20 PM. Reason: typos

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

Passed away 4-29-13
DuffyMo #151011 06-18-2012 09:38 PM
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Posts: 225
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Re the PEG, some people get through without a PEG. My brother wanted to , but the Clinic treating him insisted on a PEG before treatment started. My brother was, quite bluntly, revolted by the whole idea, but after week 4 of radiation came to see it as a blessing.
Good luck with the decisions. I really feel for you. As if the whole business isn't hard enough.


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
DuffyMo #151020 06-19-2012 06:34 AM
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Duffy,

If and when the time comes that he may need a feeding tube then by all means consider the nasal tube first. I had it for only 2 weeks (that's all I needed it) and it made a huge difference and it is easily (compared to the Peg) installed and I even pulled it out myself at home after my doc agreed I didn't need it anymore.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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