Hi. I've been lurking for some time, and I guess it's time I introduced myself. I'm a 55 year old male, diagnosed 8/29/03 with SCC right tonsil primary with met. to two right lymph nodes, stage IV. I was referred to Univ. of Chicago program, and agreed to join a clinical trial for ZD1839/Iressa. Went thru 2 four week cycles of Taxol and carboplatin, then 5 two week cycles of concurrent hydrea/5FU and twice a day rads, followed by modified neck dissection.I'm still on the Iressa, and will be for 2 years as part of the trial.
I feel like I've been to hell and back, but most importantly, BACK. I'm 3 months past the surgery, and I'm back to work full time and feeling pretty well. Not real happy with the level of strength and stamina just yet, but confident it will get there. Still dealing with significant side effects, but I guess we just need to re-define normal and get to it.
I've been very impressed with the forum, and hope I can contribute somehow.

Welcome Chuck

Glad you are recovering and feeling strong enough to post.

Yes, the significant side effects are a challenge which we all deal with in various ways. This board taught me to accept 'new normal' and get on with living. I am better at everything now - eating, swallowing and talking - and know that I am very fortunate compared to some. I feel a connection with you - we are a similar age with similar cancer although I wasn't treated with chemo. So far so good for me, long may it continue.

Fantastic that you are back at work, I guess the fatigue will continue for a while yet but you will learn to pace yourself and enjoy what you can do.

Thankyou for posting, I look forward to reading more news from you, from Helen with love

Hi, Chuck,

I'm sorry you had to join us, but glad that you found us. You are right, this forum is quite impressive, I am always amazed at the knowledge and wisdom that is available here. And how quickly the answers to all kinds of questions appear!

I think in today's world it is very hard for us to allow ourselves to be sick and to take our time to get better. I know I get these looks from acquintances like "Oh, it's been more than three months since your surgery and six weeks since the radiation ended, shouldn't you be back to normal?" And I have a hard time accepting my weakness and the fact that eating is a chore, and a very slow one, rather than the pleasure it is for most people. I have not yet fully accepted the fact that normal has changed for me, but I am working on it.

I am glad you are back at work and able to handle it. As Helen said, it is very much a matter of pacing yourself and doing what you can when you can do it. The more I am able to do, the better I am able to sleep (hours without having to drink water) and the better my appetite gets.

Good luck, Leena

Welcome Chuck!

Chuck, Welcome to the site. It is amazing, isn't it? We all have Brian to thank for that. I, too, feel akin to you as our cancers were similar. I am two months past neck dissection, but 5 months post rad treatment. Rad, for me, was the worst. I can tell you, though, that the eating, sleeping, resting, etc., all gets better with time. I just had my peg out two weeks ago and that is a relief, though I would have shrunk to nothing without it. Lost 25% of weight as it was. I pray your energy will return soon. Just curious, have you had your blood checked? After rad I had a big problem with blood count due to it and the chemo. Had to have injections of Procrit (at $800/shot) for 8 weeks to get my white and red blood cell counts back up to proper levels. That improved my energy level greatly. You might want to check it out. By the by, just being here and supporting us will be a great contribution.

Chuck,
Welcome.
I believe that the keyword is patience. It took me a long time to get back my stamina. I was so skinny that I thought that I would never be able to wear my old clothes again, and now they are getting tight! I recently had to change from Boost Plus to regular Boost for fewer calories, and guess that now I will have to make smaller chocolate milkshakes! I don't want to gain anymore weight! It is great that you are back at work so soon...just don't overdo it. It sounds like you are doing well.

Take care,
Danny G.

Chuck,

Welcome.

I went to U Of C as well. Finished treatment 2/04. Great place. Top notch in every manner. What an array of doctors and equipment. Really makes you glad you live close to Chicago.

I live in Libertyville. Glad to hear you are feeling better.

Robert

Thank you all so much for your replies.
I have had my blood checked recently, and it looked real good. I really think it is a matter of patience. I was a runner and cyclist before treatment, and I'm not yet able to resume serious "training". The lack of saliva is a significant barrier, but I recently ordered a Camelbak fluid reservoir that should help me carry fluids with me.

Robert, we must have been on different alternate weeks in the program at U of C, because I finished my last radiation treatment on 2/06/2004. I'm in Winthrop Harbor.We'll have to get together sometime to compare notes.

Thanks again everyone

Chuck