I read the prior thread where Jamos was debating joining the Cisplatin/Cerbitux with Rad trial. I have been presented with the same option, but there are pros and cons to both, so I would appreciate any input. I'm not sure where, but I thought I read somewhere that Cerbitux wasnt as effective on HPV positive SCC (yay- got results of P16 today and it was pos); so there's the "con" on that. Pros, QOL, less side effects. For Cisplatin, some cons are side-effects, QOL, hearing issues and with neuropathy in extremities; something that my family seems susceptible to.
If I do the trial, and get the Cerbitux, and there are no positive indications that its working while i'm in treatment, and I want to, they will Not switch me off of it. (only way out of trial is if there is Actual Provable Regression/Damage being done by Cerbitux.)
My thought is to Not enter the trial, but request the Cerbitux, hoping that it will be effective even though I am HPV+, and I will get to enjoy the "pro's" of Cerbitux, And, if there isn't progress, i can go to the Cisplatin.
I know that was all pretty convoluted, so good luck figuring it out! But if any of you coud get through without your head spinning, and you want to please chime in with a thought or opinion, I would be grateful. I told them I would have an answer Monday, so I have some time to learn and sort through.
As always, thanks in Advance!
Lyn

Lyn

While I posted about Erbitux & HPV, it was based on an OCF news story reporting one doctor's opinion and it has not been validated by a clinical trial. Of course the clinical trial,to see if Erbitux is as good as platinum based chemo has not been finished yet either. Basically all we posters have is our opinion colored by our experiences. I had Erbitux and wished I hadn't. Other posters did not have Erbitux and wished they had. A few had Erbitux . I also had carboplatin and between the two of them. My experience was that the Erbitux had worse side effects in that it magnified the radiation dermatitis while the carbo did not. Carbo also does not have the hearing issues if cisplatin
If you can get both then you won't have to make a choice. Ask your doctor if they will accommodate you
Charm

Are you a current smoker or a smoker who has quit?
If you smoker, how many pack years (a pack year is one pack a day per year?
Maria

Hi lynney

It is not true that you cannot take yourself off treatment in a trial.

You can. You just withdraw your consent. They don't like it if you do as it mucks up their trial results if too many people do it. However, the researchers (well, statisticians actually) will have factored this into their calculations.

It is unethical and illegal to continue a patient on a trial when they do not want to be on it. A doctor is also likely to withdraw you if they feel it is not working - regardless of the protocol.

What you CAN'T do is choose which treatment you are allocated to.

Lastly, there is no evidence that Erbitux (cetuximab) works less well in HPV related tumours than other oral cancers. That is why this trial is so important. In addition to its primary purpose to compare the effects of cisplatin vs cetuximab, they will also be looking at any differences on HPV+ve tumours.

The landmark trial that got cetuximab registered for use in head and neck cancer was a trial by Bonner et al. In this trial they did not differentiate between HPV and non-HPV tumours but there were a lot of oropharyngeal cancers in the group which have a tendency to be HPV+ve (50-70% depending on which study you read). The researchers DID stratify by tumour site and the oropharyngeal tumour group did particularly well.

Thank you all for your input, I have to give them my decision by Tuesday, latest. I know that trials are important, and if I had a say in what I get, I woud gladly do it. My preference is to go with the Erbitux, and hopefully stay with it for the duration; but I would like to be able to switch mid-stream if it doesnt seem to be workng.
I was a very light smoker; perhaps 4 per day,(no, Not packs!) but yes more back in the day when you could still smoke in bars.
I will have to have yet another conversation with my docs before I commit either way. Fortunately, my experience with the docs (and everyone) at Fox Chase has been wonderful so far with respect to communication.

Lyn

Karen and I basically agree to disagree on this HPV Erbitux issue but her last post overstates her position IMO. While not a clinical trial, my comments are based on a study of 49 patients with Erbitux and HPV. It is evidence, just not conclusive. But there is no conclusive evidence that Erbitux does work with HPV either. I can't let an overbroad statement about Erbitux go uncontested on the forum.
We discussed it at length (5 pages) in this thread
HPV & Erbitux As I stated in that thread, the Bonner trial proves nothing about HPV & Erbitux. While you can extrapolate and make a good guess, it is actually less evidence than the 49 patient study IMO since that study did not track HPV status as Karen admits. Plus I actually had Erbitux.
No need to repeat all the points in that thread as we all said our piece.

I hope the Erbitux works for you. I am about to start my third time of chemo and my MO won't even consider Erbitux for my treatment this time either. Since you were also a smoker, your cancer may be more resistant than normal. Here is a study suggesting that but it only had 30 patients
EGFR P-GP Smoking

Charm

Lyn

In rereading my post on Erbitux, I realized that I was not clear that for 95% of oral cancer patients, Erbitux is a really good decision. Unquestionably, both the Bonner and the Extreme trials indicate that Erbitux is an effective treatment for most oral cancer patients. Unfortunately I was part of the 5% of oral cancer patients for whom Erbitux just does not work at all due to genetics (it also does not work for 40% of colorectal cancer patients but they have a test to determine who's who for them but not for us). So it's almost certain that you will have good results from the trial. It is important that the trials do get enough Erbitux patients to finally settle the question if it is as good or better than platinum. Hey, when the weatherman says there is a 95% chance of sunshine and only 5% of rain, nobody packs an umbrella. I apologize in advance if my biased comments last night caused you any worries. You will be fine
Charm

Hi, Lyn
ok, glad that your previous smoking history was very light AND in the past. One advantage of the clinical trial is that it (I think) includes a slightly accelerrated radiation schedule which did show improvement for the Cetuximab arm and the radiation arm of of the Bonner data, and in other ongoing studies.

Maria

Let�s all keep in mind that the chemo portion of the treatment is a small boost to the primary treatment which is the radiation.

I have heard all kinds of numbers regarding how much chemo will add to the long term survivability after treatments. Some are as high as 10% and others as low as 0%. In my mind I settled on 5% additional punch when adding chemo.

I have had three radiation rounds.
One with Radiation only
The next with radiation, Carboplatin and taxol (sp.?)
The third with Erbitux.

So I think I have tried all of the approaches.
The first time we did radiation (IMRT) only to the primary tumor on the soft palet. This worked and the primary tumor never returned. I did get a recurrence in a Lymph node which I think is a place where a few cancer cells got loose from the primary and eventually grew to critical mass.

The second time (Lymph Node) I did the radiation (IMRT) along with the Carbo and Taxol. The treatment got about 98% of the tumor but left a small pea sized portion along with residual disease (which looked on the PET scan like someone sprinkled cancer cells throughout the tumor).

The third time I went with Cyberknife radiation and Erbitux. With Erbitux the first hurdle is weather it has any effect or not. Some people get no benefit from it so they boost the radiation by 0%. I got a small case of Acne which they said was good and showed that the Erbitux was having some effect. I chalked this up to a 5% boost to radiation and my RO said that was just about right, although it could be higher or lower, Doctor speak for "we have no clue". The first PET scan after that treatment showed no disease.

I think the point I am trying to make is that I never really sweated the chemo side. It has the potential to boost the effectiveness of the radiation but not by a huge amount. I felt it was important but not a game changer as far as my biggest concerns which were more about types of radiation and or surgical options.

There are times when I feel like tossing a coin, and leaving it up to fate. I think to some extent, that's what a lot of this is all about no matter how you choose it. I am glad to have the info I do, and either way, tomorrow after once again speaking with the docs, I will make my decision and not look back.
Thank you for the input and support. I look forward to the day when these conversations are a thing of the past, and this forum is full of "remember whens"