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Hi ... Tiffany here, continueing symptoms ...

tiff1169's picture
tiff1169
Posts: 2
Joined: May 2006

Its been 4 months since my Radiation/ Chemotherapy treatments? and now I have swelling in my throat, extreme saliva, and dry mouth. I can't swallow food yet, and am still feeding with a "gravity tube" set-up in my tummy. I have horrible head and neck pain, and am on heavy medications to try and kill the pain ... the drugs really disorient me, and I feel very "out of control" on this medication. Has anyone been through something similar that could relate with me? My doctor has done a " full-body PET Scan" and he says that I am "cancer-free" based on that test.

thumper0001's picture
thumper0001
Posts: 7
Joined: Sep 2005

Hi,
I missed the feeding tube but they came close to putting one in so there is not much I tell you about that. I finished my last of 35 rad and 3 chemo 6/23/05 and still have some swelling in my throat and neck, these are both from the rad. The pain I had in my throat was bad enough that I couldn't stay hydrated and ended up in "day treatment" frequently and admitted once for 4 days for I.V.'s to get my fluids back up. Nothing really worked for the pain, ended up with Tylenol 3's just to take the edge off a little. As for swallowing food it was probably September before I could consistently eat anything other than soup, oatmeal and soft foods, I still have to be careful with choking, I bit off a bit much on some chicken the other day and had some problems. My problem has been too littlr saliva so I can't do you much good there, I only had too much for a week or two then went dry. They did give me Mylanta with a pain med in it to use just before eating to try and make it easier. I know this probably hasn't been much help but at least I thought I would let you know the pain is not out of the ordinary, they tell me the swelling should go down at about 1 year and it looks like they may be right. Watch that you don't get any bad colds or strep throat as with the narrowed airway you could end up in the hospital,this happened to me 5 days b-4 Christmas, they were going to trach me again but didn't. I still have a restricted (but getting better) airway. It does get better but it takes a long time, as for being disoriented as long as you don't have to work I wouldn't let it get to you it's better than hurting all the time.It gets better just takes more time than we want it to. Hope this helps a little, I know are situations were a little different but thought it might be some help.

Dennis

tracy_csn
Posts: 15
Joined: Jul 2005

I am 56 yr old male who was diagnosed with Stage IV cancer in left tonsil in Sept 2004. It has been at least 15 months since last treatment. Cancer discovered in single lymph node. Had left radical neck dissection, followed by 39 sessions of radiation coupled with cisplatin synergistic chemo. Had a peg feeding tube and I am glad that I did. Lost about 35 lbs.
A couple of suggestions:
1. ask your doctor about comprehensive pain treatment; medication is not the only answer; most hospitals have pain clinics and your doctor can refer you. I still take narcotic level meds, but only once per day. At our pain clinic I was also taught relaxation practice. I also was referred to a physical therapist for stretching and strengthening exercises for head and neck, and I believe that they are essential. Also for pain I have tried acupuncture (didn't necessarily help much and I stopped that, but it does help some people). Finally for pain I get a therapeutic deep tissue massage for an hour; started once a week and now every other week.
2. Do more on-line research about PET scans. Various doctors rely upon them to different degrees. I still see all 3 of my doctors (cancer surgeon, medical oncologist, and radiation oncologist) either every 3 mos or 6 mos. Each does different examinations, including mirrors and fingers down my throat, and Cat-scans. One of my doctors trusts results of PET scans, one other believes that they are still too new. You may want to research more...
3. Is there a Head & Neck Survivors Group, or general cancer group, available to you? I participate in one every month and the support and information from others is invaluable.
Good luck and prayers to you!

eltonjohn
Posts: 11
Joined: Mar 2006

Hi Tiffany: I am a 48 year old female who finished radiation treatment for my tongue cancer last September. I underwent surgery which removed about 1/2 of my tongue and also a neck disection where they found a couple of bad lymph nodes. My neck still hurts pretty bad and I take Vicodin ES for that. I have extreme saliva one minute and dry mouth the next. That hasn't gotten any better. I did have the PEG tube from my surgery in April 05 to December 05 which was a good thing as I went down to 80 pounds. My oncologist also says that I am cancer free now. You just need to take one day at a time and do not get discouraged. If you do not have to work, take your medication when you need it and lay down. You should be referred to a speech/swallow therapist immediately.

mlowell
Posts: 3
Joined: Jan 2007

I too have swelling in the neck "Lymphedema" where the lymph system is trying to find a new path - totally normal they say. I can't eat very well but can put down soup and ensure with the best of them "oh well" I needed to diet anyway. Pet scan came back inconclusive - had uptake in tongue in a place no where near orginal cancer - they say it is muscle activity. Also a couple of spots on the back of the head where the muscles attach to skull "occiptal area" which they believe is not an issue either. All we can do is get as healthy as possible to face the coming day. Not alot of fun and a bit painful for me and sounds like a little more painful to you. God bless.

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