Hi. My name is Rhonda. I have been one of the lurkers on this website for a while now. It has helped me tremedously in dealing with my husband and I thought I should at least be courteous enough to introduce myself. My husband Leon was diagnosed with SCC of the right tonsil on September 28, 2005. He had a right tonsilectomy on October 3, 2005 followed by a right modified neck dissectomy on October 12, 2005. One lymph node positive. He is now undergoing 39 IMRT treatments. He radiation treatments were delayed due to complications with surgery. He developed an infection and a seratoma at the surgical site and that had to be cleared up before the radiation could be started. He has now completed 12 treatments and is starting to feel the effects of it. I worry about him constantly, but he has always been a very strong man. I know he will pull through this ok. Anyhow, I just wanted to thank everyone for sharing all of their insights and experiences in dealing with this "monster."

hello Rhonda,
My name is lenny and it sounds as if Leon and myself are on the same train, I was diagnosed with scc to my right tonsil with spread to at least one lymph node on sept 27. 2005 had right tonsilectomy on Oct.3, 2005, Had peg tube inserted Oct. 31 ,began 33 imrt radiation and 3 chemo sessions with cisplatin on Nov. 1 2005 completed radiation and chemo 0n Dec 16 and tomarrow Jan 11 going in for radical neck dissection, alittle scared. The radiation can get tough, I can taste very little these days but it seems to be coming back a tiny tiny bit , can taste yogurt and some tomato based soups, meat and veggies especially any kind of bean are out of the question, I really depend on my peg tube for nourishment and I still dropped 35lbs. My friends say i look good, would rather be able to enjoy food, some dryness mostly at night lots of saliva problems thick muccous most of the time, spitting and brushing my teeth alot to try and remedy that, hopefully leon and myself will continue to make progress side by side, keep me informed I am sure that leon and I have many of the same worries, hopefully we can lean on each other for are own sanity, please contact me any time. Best of luck , hang tough, this to shall pass for both of us. always lenny

I am also one of those right tonsil, 3 year survivors (we seem to be the minority - most have it on the left tonsil). Fortunately, I had no tonsillectomy or neck disection even though I was advanced staging. The radiation just melted everything away and that was that. I even refused the PEG tube although I do not wish to open the debate about that since this is a very passionate issue and many folks here really need them to survive. Eating and drinking orally with your mouth burned out and ulcerated is not for the faint of heart.

I dropped over 60 lbs and it beat the living crap out of me but I am doing fine now. Weight is up about a nice healthy 30-35 lbs, taste buds are normal (it only took a few months for them to recover for the most part), salivary function just about normal and life is good today. I even forget the water bottle some times. It was a LONG recovery so don't expection overnight changes. It took me 2 years before I was 100% functional again 1 1/2 years for the salivary function return alone.

I should add also that I had many bouts with thrush and minor infections as well in the early post Tx phase but that has long since passed.

Just try to stay on top of the daily issues as they arise and take it one day at a time. I had days from fair to horrific so expect some of that and you'll get through this ok.

Thank you Lenny and Gary for your responses. Lenny I just want to let you know my husband said the neck dissectomy was a breeze compared to the radiation treatments he is receiving. He is very depressed about not tasting his food and sometimes he even gets angry about it, but at this point he is still eating normally, no feeding tube. He has not lost any weight yet, between the surgeries and the radiation and the doctor said that is unbelievable. He also is taking the ethyol and so far so good with that... but he still has a long way to go with his radiation treatments. Good luck Lenny with the surgery - from what I hear that is the easy part (compared to the radiation).

rhonda, thanks for that piece of info about the neck dissection, going in at 2:00 this afternoon, as for taste man do I know the anger and frustration about taste, still experiencing it, it drives me to tears at times, but every little gain, and they are little, is cause for joy, but I will take it as it comes. best of luck to both of you hang in there.

Hi Rhonda,

Reading your post brought back a lot of memories of my husband's radiation treatments. Hang in there because it's no walk in the park...I know exactly how you feel. I too was so worried about my husband when he was going through treatment. It's so difficult watching the person you love be in pain. That's the one important issue I wanted to emphasize. Make sure to keep your husband up with the pain meds. Don't let them lapse. We learned that the hard way. He would go to sleep and when he woke up he was in so much pain. Then we started setting the alarm clock so that he never missed taking his pain meds and it kept him more comfortable. And ask as many questions here as you want. These people know so much, I've learned more on this site than from the doctors. I know this is not an easy time for either one of you, but he will get through it! Make sure to take good care of yourself too. You need to stay healthy. My thoughts and prayers are with you both! Let us know how he's doing. We all care.

Hugs,

Shelley

Hi Rhonda. I just registered today and like you I was one of the "lurkers" on the website throughout my Dad's ordeal. After his surgery and before his radiation I got it stuck in his head that "we must fatten you up". And he listened. He went through the radiation and had immediate loss of taste and THICK muccous. I just kept telling him that he HAD to eat otherwise he wouldn't be able to fight all this damage to his body. As much as he hated it and just wanted to scream he kept eating. My mom would cook for him day & night and when she wasn't looking he would tell me how horrible it "tasted". But he knew he had to keep eating and he did. He didn't lose a pound during his treatment. Let your husband know he finished his treatments 11/9/05 and by Thanksgiving he got a taste of that bird. You'll see a bright and happy man again on that day. Much luck to you both. Patience is a virtue.