Eight Year Survivor - Can I answer questions for ANYONE?

Nice to Meet You
Thank you for coming here and offering your support - I'm sure you know what a huge boost it is for many of us to see someone so far out who is getting better every day.

What cancer did you have? Chemos? Surgery after the chemo-rads? Staph from hospital after surgery? Tips for short term survivors looking to become long term survivors?

Thanks for joining - keep up the recovery progress.

Skiffin16 said:

Welcome Gary
Welcome to the forum...we have a lot of great people and long term survivors that share a ton of information and their experiences.

I was STGIII SCC HPV+ Tonsil Cancer January 2009. I also had sixteen weeks of Cisplatin, Taxotere, 5FU, Carboplatin and 35 daily rads with Amifostine Injections. I also had no PEG there are actually quite a few of us that had no PEG...but it's highly endorsed on here.

At a little over 2 1/2 years post treatment, I have about 95% of both salivary function and taste. Minimal side effects are remaining, just a little dried out at night.

My thuroid is taking a hit, but so far it's hanging in there....TSH is high, but Free T4 is within range still.

Best,
John

Hey Gary
Thanks for posting and thanks for inspiring. I had scc stage ll right tonsil c 1 lymph node. 3 cisplatin 34 rad imrt. No peg. Lost heaps of weight. Nearly all back on again. Finished tx April 2010. Feel really great
I have a question for you. Did you change much in your life. I am a very positive person and this certainly challenged me. Originally I did lots of juicing. Vitamins etc. But find I'm now slowing down on these as I don't feel so desperate anymore. So I was wondering if you made any or many changes and have you stuck to them. Once again thank you for posting. Cheers from Jen down under xxxx

Hellooo Gary!
It's truly a pleasure to hear from you. Made my Sunday, in fact. I'm closing in on my 18 month scans, which would be my first since my three-month follow-up scans and beginning to feel that old anxiety. I'll keep working on that mental attitude.

Please keep in touch. You are an inspiration to us all, as we anticipate our own 8 1/2 year anniversaries.

Deb

Gary
Welcome. I'm sure that you will have a lot of wisdom and experience to share. Glad that you joined. It's always inspiring to see long time survivors.

Congrats on eight years! Im
Congrats on eight years! Im sure you have lots to share. Welcome to the site.

Angel

jim and i said:

Welcome and thanks
It is very kind of you to offer help. My first question is, since you had no eatting tube did the food taste bad or just not have any taste? My husband has stage 4 Base of Tongue and 2 lyphnodes. He says everything takes like poo (I cleaned it up). Second question, how long before food tasted good again? Finally, did you change your diet after treatment and if so how?

Bless you for your willingness to share.

Debbie

Taste & Saliva - My Experience
Debbie, as I see and experienced it, there's two conditions;

Chemo: where you lose your taste but it comes back fairly fast within a few weeks, and you usually retain saliva flow. In this scenario, food might just taste bad, or no taste at all.

Radiation: that basically burns off your taste buds for several weeks to months. Some like myself get most if not all taste back, others may not. Also, the same with the salivary glands, the damage is usually sever, some get most to all back, some nearly none. During the recvoery period for rads, I had no taste or saliva for several weeks. Then both started coming back slowly, very slowly. I'm over 2 1/2 years out and I still notice improvement. I'm probably 95%+ back on both now.

The only way you know which category you're going to fall into is through time.....

Everyone is different, there are no individual answers or guarantees.

Best,
John

dilipbw said:

Mouth Cancer (upper Maxilla bone)
Hello Gary,

Thanks for the encouraging post. My Dad is currently going through the treatment for his mouth cancer. Since the cancer was under the nose Doctors had to remove the upper maxilla bone and do reconstruction using the fibula bone from leg. Currently, he is having the food pipe and nasal tubes and Tracheotomy in throat. He cannot talk right now but doctors are saying he will once the Tracheotomy is removed. My father seems very dull and weak. But doctors are saying he is recovering good.

I am worried he might be too depressed about the entire procedure + no talking since last 1 week. (his surgery was on 12th Sep 2011). He is just 50years. Anything that I can do to make him feel better and encourage him to fight this disease ?

Thanks,
Mamta

Hi Mamta
Sorry to hear about your Dad, many of us here know firsthand what he is going through. Keep up the good work of helping him and being there for him when he needs, it will help him to heal a lot faster knowing you care.

Wishing you the best and Welcome to CSN.
Hondo