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.

Believe me, Mark, I've probably pulled up more links than you on Iressa. As for the side effects, not everybody gets them. I must be one of the lucky ones that gets to experience damn near all of them. Every time I go into the doctor with a new one, they seem excited because it somehow means the Iressa is working. I get the impression that the more side effects you have the better chance you have with Iressa. I'm not being dramatic to say I cried when they put me back on it again. After my surgery they found no signs of cancer cells, so I thought I was DONE with treatment and all the crap I had to deal with was behind me.

I'm assuming right now that I'm on the Iressa as some sort of preventative. There are times that I wonder if my doctors are more concerned with being part of this study or me as a patient, because my side effects have been horrible.

As for the deaths in Japan, these were lung cancer patients (I believe) and they died from lung problems.

Iressa is pretty easy to take though. One medium size yellow pill every morningm so it's not like getting chemo or radiation. In my case, I know after having Stage IV cancer and several nodes involved, they treated it agressively. WHen approached with Iressa, I was willing to grab anything and everything to give me a cure.

Guess that's why I'm still taking the drug.

Jen

It's not a tumor, it's my arm!
Thank heavens I came back to my original surgeon at OHSU. The "tumor" and "scar tissue" they've been finding evidence of for four years is the arm "flap", chunk of forearm, they used to reconstruct the soft palate and throat 13 years ago. Whew! The team is still going over all my films and comparing them to the surgical procedures I had. But they feel pretty certain the primary site is fine. There's extreme mastoid infection as a result of the eustachian tube being cut off and closed way back then. Which explains the constant pain on that side of my face and neck.
But in all the films they found a semi-large lung tumor that they're going to needle biopsy. I've heard some negatives about those. Some say the biopsy spreads the cancer, others say your lung collapses. What have you heard? I'm thankful for all your insights about chemo. That will be happening for sure and it's good to know what works.
Hang in there Jen! My worst time was the first year after the neck dissection. It does get better.
Ali Mae

It's Your arm?.....well better than your foot I suppose!

That is a first for me to read, you would think that they could tell the difference.

Upon reading several sites regarding needle biopsy of the lung, it would appear that your best bet is to have a CT guided biopsy that does not transverse the lung. In otherwords if the needle dosen't pierce the lung (only the tumor) the risk of collapsed lung is very small. One site suggested that the overall risk of a collapsed lung is between 25% and 50%.

As for the spread of the tumor, that is a question that will probably spur debate. Search the web for additional information that you can ponder. I think it is only logical that if the cancer is well encapsulated then puncturing it will create a path for tumor cells to leak. Whether or not those leaked cells take hold and cause spread is the matter of debate. If it were me I would ask the doctors if there is another diagnostic tecnique that would work or discuss if surgery to remove the tumor without the intermediate biopsy is possible.

Oh My God!!!

I slowly read your posts and then burst out in relief when I read that it was looking good! Then I read about the lung tumor and am wondering how that's turning out?

One thing I admired was how hopeful, energetic and even humorous you were on the postings. Very encouraging and positive! You are an amazing person. While you are faced with even more challenges you managed to slip in an upbeat comment to "hang in there".

I was originally going to recommend that you ask your doctors about Erbitux.

I was just diagnosed June 10th, 2005.

I feel scared and afraid that my life is over.

It sounds so bleak! Looks like almost all of us eventually have a relapse even if they get it all the first time around.

I am such a forward looking personallity, it is crushing me to try to think just one day at a time.

My name is Michael. Dx 06-10-05. SCC right tonsil, 2 nodes (so far) positive. Stage IV (T2N2). I've learned a whole lot more than I ever wanted to know about head & neck (oral) cancers in the last 10 days.

good luck ali, hope things turn out ok remember were all hear to help u along . we have all been all the tests, the waiting, the highs and the lows,believe me there will be light at the end of the tunnel believe me. god be with you
take care maz

Michael,
Thank you!! I totally understand your terror. Even after all these years, I was shocked at how scared I got. That cold water in your veins kind of scared. What helped more than the "arm news" was the kind and caring Dr. I spoke with at OHSU. Their attitude affects us so very much and some don't realize that. The ones who broke the recent news of the terrible report were cold, indifferent, casual and flippant. Saying "Oh well, you've already lived many years longer than most." That's supposed to make me feel good?
So I came back to California with the renewed conviction to find better Dr.s. Not just skilled surgeons but caring ones. My husband said the OHSU Dr. was the first to ever look at him and speak directly to him, acknowledging his presence, even though he was always in the other examining rooms. I've come to believe that a huge portion of our success in living is a happy, thriving immune system. And that takes a fun and caring support system. Be they Dr.s or friends. My 1993 Dr. at OHSU first started me on the right track. As I read all the horrifying statistics for ACC I became a doomsday, trembling wreck. And dear Dr. Cohen said "Yes, but in all those statistics theres always at least 1% that survive well, aren't there?" Yes, I admitted. "Well", he said, "then why can't you be that 1%?" and smiled.
I realized I'd been scared and given up thinking I would live. So I began to plan for survival, got in with a Wellness group of irreverant, funny people and decided to fight. It comes and goes those first few years but surround yourself with positive and fun friends.
The day after my 13 hour neck resection, when I looked so scary my uncle, a doctor himself, threw up when he saw me, my brother came with a gift. It was a Tshirt with a big picture of a cartoon cow lying flat on it's back, feet stright up in the air and tongue hanging out. The caption read "Really, I'm fine". We both laughed and cried and decided humor was the best medicine, even sick humor.
Run, don't walk to positive people. There are Wellness groups, sponsored by Bernie Siegel, all over Calif. I went to the one in Pasadena and we were a hoot. You'll kick this thing. It's just a life lesson to force you to change for the better. Otherwise we get lazy and stuck in ruts.
Hugs!! Ali