Eight Year Survivor - Can I answer questions for ANYONE?

I have been out of treatments for 8 and 1/2 years from state 4 head & neck cancer. I went through Chemo-Radiation-Surgery-Staph Infection.

Even after 8 years my throat is still getting better and my silva glands continue to get better as well. I am one of the VERY FEW who DID NOT have a feeding tube. It would be my pleasure to provide anyone any information that I might have and also share with them the healing process.

Good Luck to all. Remember a strong mental attitude is a must!!!!!!!!!!!!!!!!!

Comments

  • Pam M
    Pam M Member Posts: 2,196
    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
    Skiffin16 Member Posts: 8,305 Member
    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
  • pascotty
    pascotty Member Posts: 174 Member
    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
  • pascotty
    pascotty Member Posts: 174 Member
    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
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    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
  • osmotar
    osmotar Member Posts: 1,006
    Thank you
    for sharing, especially for those of us starting this journey.

    Linda
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    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.
  • jim and i
    jim and i Member Posts: 1,788 Member
    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
  • akotke
    akotke Member Posts: 37
    Congrats on eight years! Im
    Congrats on eight years! Im sure you have lots to share. Welcome to the site.

    Angel
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Gary
    Great info and welcome to CSN, I am just about 6 years passed my second treatment of radiation and chemo. My problems is the second rad had damage and lot of the bone structure in the head and just now 6 years later starting to give a lot of problems. Other then that I am alive and continue to work and support my family everyday and hope to be around for a long time to come.

    You are right attitude is very importance.
    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    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
    dilipbw Member Posts: 1
    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
  • Hondo
    Hondo Member Posts: 6,636 Member
    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