Hi- I have only posted a couple of times before but as my husband just completed his radiation/chemo treatment yesterday, I hope I can draw on our experience to eventually answer questions the way people here have helped me.

At the beginning of treatment we were really waiting for the day it finished but now, as I read in the posts of others, we are facing the challenge of waiting to see how effective it was and, as usual in this world of oral cancer, wondering what will come next.

One possibility that has entered our lives is participation in a phase 1 trial for the drug erlotinib. They are looking at the value of erlotinib after completion of chemo/radiation treatment ( and surgery, if needed) where the patient seems by visual inspection and tests like CTscan to be clear of the cancer. It is slightly different from a number of the trials I have read about with the EGFR group of drugs as it will be given as a follow-up to begin to look at its effectiveness at reducing the incidences of recurrence where the patient appears to be cancer-free as a result of treatment.

There are a lot of "ifs" in John's participation, the first being of course that the recently completed treatment may not have got everything that can be picked up by tests. The other major part is that, as a phase 1 trial, they are looking at safety and toxicity so he may be one of the ones where they keep escalating the dose until the side effects become unbearable. Not sure he needs go through that!!

Has anyone had experience with this drug and if so, in what way?

Mary

Hi --

We asked Barry's RO about the on-going Phase 2 erlotinib (Tarceva) trial at John Hopkins, since we know some of the participants and it had been offered to Barry at the beginning. This trial is different from the one your husband has been offered in that it is being used up-front in conjunction with conventional chemoradiation (cisplatin, IMRT). However the Phase 1 trial had established the tolerated doses. Our RO indicated that it did seem to be adding benefit to the treatment, but was cautious that of course it is a long way from final results being in. The main side-effects, which we had been told about, appear to be acne. (Barry was offered this trial but declined because he wanted to avoid using cisplatin).

However my point is that there is some existing information on dose/side-effect response for this drug, even though it was used in a different manner. You may wish to ask your husband's medical oncologist about how the dose John would receive compares to the doses being given in the Phase 2 combination therapy trials, as this may provide some information on expected toxicity and side effects.

Barry is in a bit of the same situation as John, he has been offered a HPV vaccine trial if his ongoing tests continue to show that his treatment, completed 9/28, was effective. It is also a Phase 1 trial to see if the vaccine will reduce recurrence rates in HPV+ HNC. However, not much data exists on dose and possible toxicity...so a bit of a gamble as well.

Gail
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Barry SCC right tonsil and BOT, 2 nodes, dx 6/21, Stage IV, HPV-16+, tonsillectomy, carboplatin 7X, tomo-therapy IMRT 33x, tx ended 9/28.

I am currently in a phase II trial that includes erlotinib (Tarceva) along with a chemo regimen to treat my recurrence. I've been on it for a little over a month now. They started me at 150mg, but after about two weeks it caused pretty severe acne. So they took me off it for a week, then lowered the dosage to 100mg. I am tollerating the 100mg level much better. It is still causing acne, but I would characterize it as mild and manageable. So far, the acne has been the only issue I have had with the drug. Fortunately, for me at least, it seems to being doing the trick. Since I re-entered treatment, we've seen a 20% reduction in the size of my tumor. Over all, I seem to be tollerating the drug quite well -- it is certainly less invasive and causes much less discomfort than the chemo or radiation and I would urge your husband to seriously consider it. Anything you can do to decrease your chances of recurrence is certainly worth it in my book.

-Brett

Brett
I was so glad to read your post, I have been wondering how you were doing.
A 20% reduction is pretty significant!
Wishing you and your family a great holiday and continued success with your new drug protocol.
Take Care
Marica

Brett and Gail- thanks so much for taking the time to share your information. It's very, very helpful. Marica, also thanks for reading the post

One thing I can't help but notice is how different treatment is (sometimes only in seemingly small ways - but different nonetheless)for those with what appears to be the same type of cancer. It can be unnerving but I guess it's just part of the whole heap of uncertainty that comes with a diagnosis of oral cancer.

all the best
Mary