Hi there!
I'm a newbie to this site but an old timer to ACC. 1990 I had the uvula removed and diagnosed as ACC, 1993 a 13 hour neck resection removing soft palate, eustachian tube, malig nodes and general clean-up, then 9 weeks rad. The usual complications but a joyful new life in a sunny new state for 12 years! Now they're finding it all over the primary site again. From soft palate down to base of tongue over into the mastoid bone and neck muscle, up to the eyes. Scary. My new Dr. says "Oh, well. You've already survived longer then most. It's inoperable." I think he's one of the lazy ones who doesn't want to deal with post rad tissues. So, I'm heading up to Oregon today to see my original surgeon. He's the one who took a chance when everyone else had given up 12 years ago. If anyone can come up with a game plan, it'll be OHSU.
Has anyone had good luck with chemo? Taxol seems to be common. At this point I'll try anything. After a "cancer divorce" 9 years ago I just got re-married a year ago. We've got way too much still to do.
Ali Mae

Hello Ali Mae,

I have had good results from chemo. Carboplatin & Taxol. I had a reoccurrance last June and have been on it almost a year now. My follow up scans in late Dec showed the mulitple nodules seen in my lungs in June were no longer there. The cancer in the original area, right tonsil had not changed.

I am scheduled for my next scans late this month. Hoping for the best. Hope you find the treatment that works for you.

Best Wishes, Danny Boy

Ali Mae, I am a native Oregonian and although I was not treated there, I know they can do miracles at OHSU, so you will be in good hands. Hurry back north, and let us know how you are doing. There are many here who will be pulllng for you!

Joanna and Danny Boy,
Thank you for the quick replies! I'm in Oregon as we speak and amazed that it can rain even in June! I've been in So. Cal too long. But I'm excited to see the team at OHSU and have MRI, CT and PET/CT films in hand. Danny, I'm encouraged by your taxol report. I'd heard Iressa was being used but every patient history I found said "deceased". A bit scary.
But Taxol seem to be happening across the board.
Today it's Saturday Market!
Hugs to both of you,
Ali Mae

Ali Mae
Things have moved on replacement of soft pallete and bone grafts have come a long way and Iressa is now the standard back up in the USA, in the UK still on trial, go for it all, cowards get cancer too. We can all beat this..
Sunshine.. love and hugs
Helen

Ali Mae,

I've been out of treatment(rad and chemo) since March this year and they have me in the Iressa study now. So far I'm not "deceased" yet, but hey I've had a rough ride with Iressa. They tell me I'm one of the few that gets some of the more horrible side effects, but grin and say that means it's "working"

I'm hoping by taking it that I don't get "remarried" to cancer.

Jen

Forget Iressa - the FDA has pulled it for not being efficacious (effective).

Gary, I might be wrong, but my doctors are continuing on with the study. I think it was pulled for not being effective on lung cancer patients. They are still looking to see if it's effective on head and neck cancer patients.

Believe me, when someone told me it was pulled and they took me temporarily off the drug, I did breath a sigh of relief. After I healed up from the neck dissection, I literally got weepy when they prescribed it for me again (and again, I had some horrible side effects from it)

I don't take detailed notes (outside of my daily blog over on the Live Journal area) but the radiation oncologist brought in the doctor that heads the study to take a look at the blisters all over my face. They mentioned some head and neck cancer study that has been going on with Iressa in Chicago where the two year survival rate was 90% (I could be wrong with the percentage, but that's what sticks in my mind)

While I am most certainly not a cheerleader for this drug, I'm continuing to take it, I guess, as some sort of preventative measure against recurrence. Having been through both radiation and chemo as well as surgery, it just seems like one more weapon to add to the mix.

I've definitely been the poster child this year for Iressa side effects. You name it, I've experienced it or am still experiencing it.

Jen

I searched for clinical trials for Iressa for H&N and this is what i came up with:

http://www.hsc.wvu.edu/mbrcc/ctru/cancer/head/e1302.htm

http://www.clevelandclinic.org/cancer/trial/clinicalTrials.asp?Disease=Head%20and%20Neck

http://www.clevelandclinic.org/cancer/trial/clinicalTrials.asp?Disease=Head%20and%20Neck

http://www.astrazeneca.com/pressrelease/432.aspx

http://irt-web.stanford.edu/clinica...74551&condition_subordinate=19474796

Indeed you are correct that they are continuing to discover other possibilities for Iressa (including cervical cancer as well). I thought the Standford one was particularly interesting.

Watch out for those side effects, in some patients they can be rather nasty, particularly when the liver is concerned.

I ran across a study in Japan that showed an unacceptable number of deaths from side effects of Iressa, as well as no benefit from it's use. I have no way of verifying this information and I didn't save the web page. I did find it by searching "iressa" in google. I guess caution would be the word I'd use.