side effect improvement 1 year post treatment

schmij30
schmij30 Member Posts: 5
in Head and Neck Cancer #1
Quick background: Squamous cell carcinoma of the Nasopharynx, Treatment started with the removal of 8 Lymph nodes in the neck, 5 weeks of radiation and 5 weeks of Cisplatin, then 3 months of 5Fu.

October will be 1 year since my last treatment. I'm curious if anybody who had similar treatment had improvements with their side effects post 1 year of treatment, or if most likely the recovery is complete. Of course I know everybody is different I'm just curious about others recovery post 1 year after treatment.

The Cisplatin beat me up pretty bad. Some of the side effects I have are 30% kidney function, numbness in the hands and feet, severe hearing loss, issues with focus and concentration, much lower blood counts (red, white, platelets, etc), maybe 10-20% saliva production, sensitive gag reflex (from the radiation), reduced sense of smell, and others I'm not remember right now.

Did anybody see any improvements of these side effects post 1 year?

Thank you in advance for your response.

Comments

  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #2
    Welcome
    I can't really help with any of your questions as I am just past one year since treatment ended. But I did want to welcome you to the forum. Cheers.

    Jimbo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Schmij
    Your cancer here is better known as NPC and there are quite a few of us here who had it. Some of the side effects will in time subside and get better and some you will live with the rest of your life, it is all part of your new normal, things we learn to live with. I am glad to see you are 1 year passed treatment and doing well, keep up the good work and doing well.

    PS: Welcome to the family here on CSN
    Hondo
  • Greg53
    Greg53 Member Posts: 849
    #4
    Hondo said:

    Hi Schmij
    Your cancer here is better known as NPC and there are quite a few of us here who had it. Some of the side effects will in time subside and get better and some you will live with the rest of your life, it is all part of your new normal, things we learn to live with. I am glad to see you are 1 year passed treatment and doing well, keep up the good work and doing well.

    PS: Welcome to the family here on CSN
    Hondo

    Schmij
    Sorry you find yourself here, but welcome to our little group. About me, I had SCC right tonsil with bilateral mets to 11 nodes (10 on one side, 1 on the other), Stage 4a. Dx - Jan. of 2010. Tx -5 weeks of rads with 3 treatments of Cisplatin. Tx ended 4/10. So I am 17 months post treatment. I did not have all of the same side effects you did, but I did have a few of them plus a few others.

    Of the ones you mentioned:
    I had major hearing loss, which unfortunately has not improved (Caused by Cisplatin).
    I had issues with focus and concentration. I have seen an improvement since my 1 year post tx date (unless it's my wife asking me to do something, then I can't remember a thing)
    I was at about 20% (+/-) saliva at 1 year out. I am still seeing improvements in this area. I can tell this cause at 1 year no way could I eat steak, chicken, etc. There is not much I can't eat these days.
    I have always had a quick gag reflex but it definitely got worse after rads. It still is bad but going back to what it was before tx. (Still HATE that dang scope though!).

    As everyone here will point out - everyone is different. But I have seen a lot of improvements in the last 5 months (the time past 1 year post treatment). Hoping you see some improvements as well!

    Greg
  • Gary 1946
    Gary 1946 Member Posts: 5
    #5
    Schmij30

    I have been out of treatments for eight years. I had extended cemo/radiation/surgery,
    The first year or so was just horrible. I did not have a feeding tube and was fed through a port (my choice) and it took 8/10 hours a day to get fed.

    But I must tell you every month it gets better and better. Today (with water) I can eat everything except steak. It is just to hard to swallow. My silva gets better as well. I lead a very active life ( as active as I was before the cancer) and take great care of myself with exercise.

    The first two years are the hardest and then it gets better much faster. Make sure you get your teeth checked out. There is a lot of damage from the treatments.

    Good luck, stay strong the hardest part is behind you.

    Gary
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #6
    ONE YEAR NEXT MONTH
    I will be one year post TX next month. I CA was in my Right Tonsil with METS to the neck. 3 surgeries, 35 rounds of Rads and 3 Cisplatins. Was an A$$ kicker for the first 3-4 months, but today am working 50 plus hours a week, at the gym 4-5 days per week, cycling ETC.

    My biggest "annoyance" is the dry mouth. To date, I do not have much saliva. I can eat a wide variety of foods, and have a ton of energy. The other "annoyances" are a numb face after the surgery, some aching pains in my jaw and collar bone area on my right side, and some ringing in my ears. All very easy to put up with in the "scheme of things."

    Hope you too are doing well!!

    Mike
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #7
    Return to your normal status prior to treatment would be a wonderful surprise to many of us here on CSN. For me many many years later I keep searching with hope that I find something for a few side effects that nag me from time to time. As some have shared after time you will be used to it and not recognize it from time to time. Thinks like water bottle with you, paper towel, cramps in the neck, etc. One that surprise me was at about 8-10 years 95% of my cramping went by the way side. Doctors told me that it was because the scar tissue takes many years to fully develope.

    Thrilled to hear you made one year, for me that was the largest moments of emotion. Happy moments of coarse. When I did my recovery the history was making one year thrilled my doctors. Congrats on your surviving one year, go out and celebrate.

    Welcome to the best place on earth to get information and unconditional support for head and neck cancers.

    John
  • schmij30
    schmij30 Member Posts: 5
    #8
    Thank you
    Thank you everybody for your response. It's nice to hear some people have made some improvements post 1 year of treatment.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Welcome
    Welcome to the forum....

    I'm a little different as I had tonsil cancer and treatment. But the treatment was similar...sixteen weeks over all of cisplatin, taxotere, 5FU and carboplatin and radiation...STGIII SCC HPV+.

    I'm over 2 1/2 years post and I am still seeing imrovements. About the only side effect that you mentioned that I had was salivary function. I had next to none for several weeks, then eventually it started to increase.

    At first it was subtle...if I really concentrated I could get a little. Now I'm back about 95%, just a little dry at night.

    Best,
    John

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