Stage 4 Both Tonsils

I am so glad I found this board you all have such remarkable stories.

we just started our journey on 4/13/07 recieveing results from biopsy taken from lump on lymphnode on neck.  Positive for Squamos cell carcinoma...We had CT head and chest same day...Next stop was OR to have Paradoscopy done and try find the primary.  Lucky we did it was in right tonsil so they took BOTH out and some other samples.  Turns out the Right was primary but it had also spread across top of mouth and into left tonsil.  Supoosedly rare.  We found out this at our first visit with the Radiation doc. The pain was really bad for him.  He could barely take liquids.  The were very tentative to this and he went on patches for Fentynol which really allowed him to obtain relief versus the narcotics which every 3 hours they were subsiding.

They are not taking the Tumor on the Lymph node on the right side.  They told us with the success with Radiation and CHemo the will radiate and if anything left they will then remove (has anyone had this way)  He is also hopefully going to be in the trail with Erbutix new drug.  Which means he will get 3 items to get rid of it....6 weeks of radiation 5 day a week - 3 Chemo sessions and 3 ERbutix(if selected for trail.  We will have final decision MOnday.  We got fitted for the Darf Vader costume today and will pet Scan on Thursday.  They are putting a feeding tube in (PEG) because he wil recieve radiation on both sides and will lose swalling capabilities.  Has anyone here lost swalling capabiliti???

We are both scared it is Stage 4 - T3, N3...The Ct today should hopefully tell us there are no lymph nodes compromised on rledt side.  The PET should confirm it has gone no where else...The original CT head and Chest had no signs in Lungs or Brains....YEAH YEAH YEAH

We both have great sense of humor and hope to keep this.  The tonsilectomy pain was terrible.  THis for a man who never takes anything...He works construction and literally cut the ends of his thumbs off anf were stitched back and he never took an aspirin.  He was overwhelmed by the pain.  Our Dr. said that the pain there is as good as he will feel for a while witrh radiation.

ANYONE trying Erbutix? Any other Clinical Trails?

Any advise and thoughts woill be so great.  Thank you all for sharing your hope...

 Let me tell you we are very lucky that we are going to Moffit in Tampa The are experts and we could not be in better hands.

Hi Tonsilessinfl,

 I had SCC with my left tonsil as primary, which had spread to two left side upper lymph nodes.

For treatment I had a tonsilectomy (left tonsil only) and a modified radical neck dissection (left side only), followed by 6-1/2 weeks of radiation and chemotherapy (only 5-1/2 weeks of radiation to my right side, as a precaution in case the cancer jumped over).  For the chemo, I used Erbitux and Cisplaten weekly (7 total treatments).  I also had daily Ethyol shots, which are thought to help preserve salivary glands.

The tonsilectomy was the worst pain of all.  The rad/chemo treatment was very wearing over time  -  the throat got to be quite raw for the last several weeks of treatment then for a few weeks afterward.  Eating was difficult due to both the sore throat and loss of taste (my taste has more or less completely returned - I am 6 months post-treatment).  Not an experience I would volunteer for, but survivable.  Make sure to tell your doctors anytime anything is wrong - even if you've gotten medications, since the first medications don't always work very well so you'll want to try something else.  Also, the Erbitux may cause a severe outbreak of pimples, which for me were treated successfully with antibiotics and steroids (I also used some topical antibiotic gel).

You may want to go to www.oralcancerfoundation.org, where there is a very active forum, and you can get a lot of information about the treatment.  I have posted there quite a bit about my experience.

Best wishes,

Chris

Thank you so much for your response.

 What hopsital are you going to?  We are going to Moffitt in Tampa and they seem wonderful.  All they do is cancer and they are the 3rd best with Head and neck.

He has Stage 4 in Both tonsils, roof of mouth and also tumor on lymph node onright side is greater than 6cm.  He had both tonsil out 2 weeks post now.  We hopefully will get the erbutix injection next week and then start Rad and Chem on 14th.  He is having 6-8 weeks Radiation 5 days a week and only 2-3 chemo sessions.  Radiation will be on both sides all sessions.  They told him the tonsilectomy pain will be nothing.

Did you have feeding tube ?  They said good chance he will lose swalling capability temporarily,  This ahs created the most fear for us both.

Glad to hear the Erbutix wasnot a severe reaction.  He has great pigment inhis skin so they feel he will have reaction but not as great as some because of this.  Did rash go away?

Hi again,

My treatment has been completed since late October, 2006.  I went to treatment centers in Bethesda, MD.

I did not get a PEG, so I had to keep eating throughout.  I ate a simple, mostly liquid diet with each meal consisting of 2 Boost Plus and an egg-beater omelet.  I got about 2700 calories per day with this diet and lost only a little weight.

The pimples were initially quite severe, especially on my face, until I got the treatment mentioned before (steroids and antibiotics).  The treatment cleared them up quite well, although even now I still get a few pimples here and there.

Chris