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#22370 02-25-2007 09:07 AM
Joined: Feb 2007
Posts: 77
ccw Offline OP
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Feb 2007
Posts: 77
Hi Everyone,

Here's my story from the beginning.

I'm a big lacrosse fan, and the Laxpower D1 forum last May ('06) posted an article about a former lax player who died of colon cancer. One of the regular forum posters subsequently encouraged everyone over 50 to get a colonoscopy. I was 51 at the time, and had been putting off the colonoscopy - the lax forum posting scared me enough to get me going.

During the pre-op exam for my colonoscopy, the Dr. noticed a small lump in my neck. I told her I was in the middle of getting a crown put on, and she thought maybe that was the reason while recommending I discuss this with my dentist. Well, after the crown, and a re-done root canal followed by antibiotics, the lump did not go away. After some additional gyrations, my GP sent me to a head and neck surgeon who did a needle biopsy, which turned out to be probable SCC. A PET/CT scan showed 3 tumors, one of which turned out to be my left tonsil and the other two were lymph nodes in my upper neck on the same side (all less than 3 cm).

I had surgery in late August, 2006 (modified radical neck disection), followed by 6-1/2 weeks of radiation (both sides with IMRT) and chemo (cisplatin and Erbitux once a week). I also had a daily Ethyol shot.

The treatment itself went very well, all things considered. Eating quickly became a big problem until I settled on a simple diet: 3 meals per day, each consisting of 2 Boost Plus, an egg-beater omelet with cheese and sometimes ham (got to watch that cholesterol), and tea with honey. I lost only a little weight and avoided a PEG. The Erbitux caused a severe outbreak of pimples, especially on my face - this was ultimately treated effectively with steriods and oral antibiotics. I took Zofran for nausea. Near the end constipation became a big problem, only resolved by daily enema's. At the very end of the radiation and for a week or so thereafter, I had severe radiation burns on my neck which scabbed over, thought to have been aggrevated by the Erbitux.

Of course, my wonderful wife helped me throughout the entire process. She helped me communicate problems and queried the doctors persistantly for acceptable treatment of side effects. I also had a great team of doctors.

What the future will bring? I don't know, but I am feeling very good now, 4 months out of treatment. My taste buds have come back quite a bit, although I have no interest in eating snacks (yet). I take saliva generating pills 3 times per day (not hughly effective, but a little helpful). I apply flouride to my teeth twice a day (tastes terrible even though it's flavored). I continue to exercise my left arm and shoulder, as well as working my neck muscles and jaw (the jaw gets quite stiff if I don't work it). I also use a humidifier at night (this was especially helpful for my breathing at night during treatment) - although my wife says I saw logs pretty well.

By the way, the colonoscopy was fine (i.e., no problems).

Best wishes to all,

Chris


SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
#22371 02-25-2007 12:03 PM
Joined: Jan 2007
Posts: 735
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jan 2007
Posts: 735
CHRIS

Welcome to the sight , unfortunatley you had to go through all this to be here. I am new myself but I can tell you that it is a wonderful place for information and support and the fact that you are willing to share your experiences are great they will help others going through this. Of course we want the medical information but I know for me I want the "real" of it to , so I can prepare as best as possible ( if at all) for what is to come or even to see that there is a light at the end of a tunnel. Great to hear that you are doing well though . Keep your chin up as they say and One day at a time if I have learned anything that is it !

Sharlee


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#22372 02-26-2007 05:15 AM
Joined: Jan 2007
Posts: 108
Gold Member (100+ posts)
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Joined: Jan 2007
Posts: 108
Hi Chris,

Glad you made it here safe in the post treatment phase. Hopefully those taste buds will be back in no time. Unfortunately for me, it took about 14 months to recover taste and saliva levels. I am 4 years+ out now so if you have questions fire away.

Take care,
Jim


T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
#22373 02-26-2007 05:30 PM
Joined: Feb 2007
Posts: 168
Gold Member (100+ posts)
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Joined: Feb 2007
Posts: 168
Glad you found us Chris. As you can see at the bottom of my post we have a very similar dx. I'm about halfway through and I know about the quick tasteloss. Today it was mostly Fortify mixed with 8 ounces of milk. That gives me about 500 cals and the flavor isn't too bad. I'm just now starting to feel the leg fatigue and the burning in the tonsil area. I haven't really ate normal since the first surgery on the 26th of Dec. Unfortunatly my needle aspiration didn't show the cancer. so they took the node out and found it. They did a tonsilectomy and found the tumor on the left tonsil. Sorry to ramble this much just say, keep me updated on how things are going and I'll keep you and your family in my prayers.
Lee


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee

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