Head and Neck Success Stories

dbaker331

I'd like to start a thread on people that have good experiences and advice to share with others. I am 5 years removed from radiation and neck dissection for squamos cell carcinoma in the tonsil and lymph nodes in the neck. Went through all the struggles of feeding tube, getting over pain meds, eating, swallowing etc...

I have side effects today, but I'm going stronger than I ever have and have a nice outlook on life and a new confidence in my abililty to tackle anything.

I see these threads and would really like to solicit a list of success stories that can inspire others going through these life challenges. dbaker331@aol.com

ejj54

Went through the same thing. I am glad to hear you are 5 years out. I just had my 1st "new birthday" as I am 1 year out. What side effects do you still have so I know what I am in for. I just got back from Mayo in Rochester yesterday and they say there are no new signs of cancer. But they took allot of my tounge and I talk like a drunk all the time. I still have a hard time with swallowing and my neck is "woody" from the radiation. Does this stuff get any better? Has your neck loosened up any? I also lost allot of upper body strength and hav very little feeling in my neck. Does this get better with time? Thanks for hearing me out. ejj54

maur

ejj54 said:

Went through the same thing. I am glad to hear you are 5 years out. I just had my 1st "new birthday" as I am 1 year out. What side effects do you still have so I know what I am in for. I just got back from Mayo in Rochester yesterday and they say there are no new signs of cancer. But they took allot of my tounge and I talk like a drunk all the time. I still have a hard time with swallowing and my neck is "woody" from the radiation. Does this stuff get any better? Has your neck loosened up any? I also lost allot of upper body strength and hav very little feeling in my neck. Does this get better with time? Thanks for hearing me out. ejj54

My friend Rod age 38 was diagnosed April4 with stage 4 b SCC. The tumor was on his tonsil and in 8 lymph nodes on the left side and 1 on the right. He had to have all his teeth removed and a peg tube put in. 35 radiation treatments and 3 rounds of cysplatin (chemo). This was all very scarey for someone who was never sick. He didn't have much support from family and a girlfriend who decided this was all too much for her and left in the middle of treatment. I prayed for him eveyday without ceasing no matter what. On November 5 his pet scan revealed the cancer was gone.Praise God! He has been check every month since and the doctors are so impressed. He has terrible dry mouth, depression sometimes, dentures and is very thin but he is alive. He will continue to fight this. He cannot eat certain things but that too is getting better. He was a singer and doesn't know if he will sing again but he will try. Please don't ever give up!!! There is light at the end of the tunnel no matter how bad things are and they can get bad during treatment. I think the treatment is barbaric but for now it's all we have. If my friend can get through this, anyone can. He is looking up now and going forward. God willing the cancer won't come back. God bless all of you, if I can help please ask!!

jlee1

I'm just starting the treattment for tonsil-lymphnode. They want to do imrt and chemo but what really scares me is the feeding tube thing.
Does this come during treatment or after? How long is it generally in? Any info on it would be appreciated. Actually any ideas etc. that you have for how to handle this would be appreciated.
Thanks
Jlee1

MEldridge

jlee1 said:

I'm just starting the treattment for tonsil-lymphnode. They want to do imrt and chemo but what really scares me is the feeding tube thing.
Does this come during treatment or after? How long is it generally in? Any info on it would be appreciated. Actually any ideas etc. that you have for how to handle this would be appreciated.
Thanks
Jlee1

I am 1 year out from surgury (neck disection)and radiation treatment. I had the feeding tube (peg) put in after 16 treatments, due to swelling in my throat and soreness in my mouth. I actually kind of found it convienient. I could eat in a hurry, as much or as little as I wanted and got all the nourishment I needed and it was painless.(about the only thing that was painless Ha)

Khanghi

jlee1 said:

I'm just starting the treattment for tonsil-lymphnode. They want to do imrt and chemo but what really scares me is the feeding tube thing.
Does this come during treatment or after? How long is it generally in? Any info on it would be appreciated. Actually any ideas etc. that you have for how to handle this would be appreciated.
Thanks
Jlee1

jlee1,
The G-tube looks rather ungainly and, OK...kinda ugly, but I have to tell you, it will be your best friend for awhile. I had my first one installed when I had my neck dissection but ran into trouble with it about three weeks later when it became infected. DON'T WORRY! It was decided the trouble wasn't with the tube itself but with the insertion. Right then I decided I was going to "tough it out" without one. BIG MISTAKE! I figured as long as I could swallow, regardless of the pain, I could get by without a tube. Then came a period where I could swallow neither solid of liquid for a period of almost two weeks. I had to be hydrated via IV until I could get back into the hospital for another tube. This time my sugeon was the best! I can't tell you how nice it is to have a full stomach again! It's easy to take your meds and get water and high quality nutritien. Don't worry! It's all good! Take care of it, keep it clean...and fill'er up! Take good care of yourself!

DJ

Sdawe

My husband just came home with a feeding tube this past week after tumor removal from his base of tongue and reconstruction from his forearm. The feeding tube has been the easiest part to deal with and is great that he can get his meds and food/water as soon as he wants or needs it. When they remove it it heals quickly. We are 95% sure we will have to get radiation and that will begin in a few weeks and the tube is a great piece of mind not knowing the degree of symptoms he will face. Good luck...SD

ivan7

Hi, my wife has had, recently, on november 04 and may 05, two surgeries for head neck squamous cell carcinomas. With radiation during jan and feb. The cancer spreaded anyways, so she had the surgery in may 05. Now she will be on therapy with toxil and erbitux,because there is possibility of lung metatasis, and we don´t know how this will affect our lives, specially hers on psich and phys parts. please if you know anything about this treatments let us know.
We are in Caracas Venezuela and would like to hear from people that had this kind of cancer and the symptoms related to all this complex situation, thanks in advance ivan