forever effects

phillyboy
phillyboy Member Posts: 23 Member
in Head and Neck Cancer #1

Many long term effects from chemo or radiation can show up unexpectedly and will effect your quality of life. I am 2 1/2 years out of chemo and radiation for neck cancer surgery and still no taste or saliva. Thought some was coming back a few weeks ago and I was wrong. I am dealing with painful neuropathy with no success. Opiods are not the answer. Permanent colds with no fever are another major issue. No solution found. Loss of balance is another major problem and surgery is risky and not guaranteed. Have severe hearing loss.What surgery and chemicals did was to prolong my life and for that I am grateful.Vitals are good. Still have my sense of humor at times but not able to do much. Thank God I have been cancer free but other late effects can show up at any time for any of us.

Comments

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 88 Member
    #2
    Taste

    Sorry to hear your taste has went backwards on you. I was so happy to hear you mention a few weeks ago you finally had some taste coming back after a couple of years since finishing your tratment. I'm about 18 months out from my Tonsil / lynph node treatment. Had 35 rads and 3 high dose Cisplatin treatments. My taste currently is probably over 90% back on regular food and 80% on sweets. Mine took about 11-12 months to get to that point. I have mentioned this before but was really struggling on the taste and someone on this site mentioned that drinking lemonade helped them to get their taste back. I tried it and low and behold the taste started coming back for me. For me, I have noticed as long as I drink the lemonade on a regular basis, my taste buds seem to do better. Don't know if you have tried this but it can't hurt if your able to drink it. Give it several weeks to see if it opens up the taste buds. I know how difficult it was not having any taste and I can't imagine going as long as you have with no taste. All these side effects just suck. Take care and God Bless.

    Rick

  • Iyana271
    Iyana271 Member Posts: 4
    edited March 2020 #3
    Sad & happy at the same time

    I'm really feeling sorry for you, but at the same time I'm happy that you're cancer free now. Well, you're right that side effects can always occur after a treatment & coping up with those side effects is really not easy. 

    I just want to know, have you consulted with your doctor regarding these side effects? Maybe he can give you better solutions to cope up with the side effects. If not, then you can fix an appointment with the doctor and get the best advice for your cold & loss of balance. I hope your taste recovers soon. 

    Best wishes!

  • ERomanO
    ERomanO Member Posts: 323 Member
    edited March 2020 #4
    Sorry to read that your taste

    Sorry to read that your taste and saliva weren't recovering like you thought they were.  I had a similar experience with saliva.  I thought it was coming back strong, but found out differrent in short order.  I would suggest trying ricksmithgolfer's advice on lemonade, or any lemon based prodct, to try to stimulate taste buds. It might help in the saliva department as well.

    Can you elaborate on your comment about loss of balance and surgery being risky. Are you saying that surgery is required in order to restore your balance?

    I also have neuropahthy.  It truly waxes and wanes throughout the day, but Gabapentin works to control it.

  • Logan51
    Logan51 Member Posts: 470 Member
    edited March 2020 #5
    ERomano

    Ear surgery, I think, is what he's talking about. Had a similar time, post-accident, many years ago. Diagnosed as a problem with one of the 3 canals in my left inner-ear- which has a major effect on one's balance. Was told surgery would be the only remedy, and "no guarantees" it would fix the problem. With me the symptom was bouts w/vertigo. With Philly it would be tx damage done to his ear, because he talked about "severe hearing loss," I reckon. My solution was/is to avoid certain positions when looking upwards. No doubt Philly does not have that option to fix it.

  • ERomanO
    ERomanO Member Posts: 323 Member
    #6
    I didn't put the two together

    I didn't put the two together (severe hearing loss and balance), but now it seems pretty obvious.  Thanks for that clarification!

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #7
    Taste

    I got most of my ablity to taste back after 6 months, buy it never came fully back.  Now 9 years out it is about 80%, for which I am most greatful.  I know for some it does take a very long time so don't give up hope.

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited June 2020 #8
    Side Effects

    4 yrs later but started at 2nd yr horrible side effects.  Had Stage 1-2 HPV16+ I left tonsil skin only,  tiny patch I had for 3 yrs never changed.and all reg Drs blew off as allergens irration.   Saw ENT for clogged upper under ear Salivary swelling saw patch & asked if he could biospy.   Came back Cancer.  Than did second biopsy for HPV.   Yes.  Referred Me to 2 Drs in our area of Fl.  Only Cancer in Sarasota.  They decided treatment to be the usual 7 weeks IMRT Rads 7 weeks & Chemo, 2 drugs taxol & Cisplaintain. was pushed so hard & fast to start immediately since had patch for 3 yrs.  as each year progresssed more side effects occurred.  Lost of regular Saliva & blocked sub Salivary glands under tounge.  Replaced with Chemo Saliva.  That mucus, ropy, sticky yucky tasting saliva & lost taste buds.  About at 2 yrs lost thyroid. Hearing & eyes have been effected.  No fluids.  That's from the 70 gs of Rads both sides, Chemo causes a sodium low issue due to dry mouth.  Drink to much since mouth bone dry 24/7 so drink, you pee & lose sodium.  my body can't hold on to it.  Have to take 6-8 1gm salt tabs all day to keep Sodium from dropping or get an pay for an IVtp prevent it going to low & can die.  I saw test results was told all My test were fine every visit as sodium declined from 140 to My new normal  120-125.  If I start lower could have another seizure, semi coma, stroke like I did in 2017.  Treatments in 2016 Feb.  also both Red & white blood cell count to this day lower than normal.  I developed 5 new problems with stomach since 2015 last Colonscopy before Cancer DX & Treatments.  Was on FT for almost 2 months due to Rads.  I am extremely limited to what I can eat which is basically nothing.  Throat constantly sore new ENT, old left Sarasota, new ENT saya don't see any reason but tissue in mouth gets sore from having to rinse 20 times a day to keep mouth moist and Chemo mucus from driving Me crazy .......so yucky and drying.  I only can drink clear Propel , a little water, 1 herbal tea tastes semi OK.  That's it.  Welcome to the world of being Overdosed.    Please make sure you go to good Center, one you trust, do not allow them to push you around, your body and quality of life IS important. I wish I would have know more came so unexpected & no time to research.  I would have checked out Moffit in Tampa or Mayo or Baptist in Jacksonville.  May have had a real chance of not only beating this but have a quality of living with My family.  Now nothing but bedridden.  Drs could care less you see they killed the Cancer but wait you also basically killed Me.  Never once spoke honestly to Me or let Me decide for me. preyed on my lack of knowledge & scare tactics.  I'd go to CC if I could go back, anywhere but here.  WishnI had had a compassionate team by My side.  Boy I am in pain and No pain Dr on staff or they refere too.  Can't sleep.  Found 2 yrs old very low dose Morphine only thing that helps sore throat and allows Me at least 6 hrs sleep in a row or really nothing.  Usually up every 2 hrs in pain otherwise.  I can't even cry, regulate temperature, get overly hot than the chills. Dont sweat, can't eat many fruits vegs, salads no, very little meat anymore, eating out pretty much impossible, never anything on menu.  Loved Italian no more, no sandwiches except 1/2 French dip dosed in sauce.  No BBQ, pasta with sauce, hamburgers, pizza, so sick of shakes & liquid diet but probably be back on FT, eat anything now before than.  Use to be able first yr, had saliva eat a filet, bked pot & broc and sm side salad.  Oh how I wish I could now.  chicken piccata, or Marsala no more, I could even eat my famous nachos nope.  No chili, no beans, milk, soy, almonds any dairy, allergies made worse by Chemo & stomach issues.  Slowly going insane especially since no energy to go out walking or just get out .  Been so miserably hot & humid can't be outside long even on our deck.  Near 100 today here in Fl.  Since can't regulate temp overheat quickly.  Has made navigating this Virus so much harder.  Assume have very little immunity to anything that comes My way. 

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited June 2020 #9
    Chemo Saliva

    Mt ENT told Me Chemo Saliva is saliva changed by the Chemo chemicals a lose their water compound and will never get better.  I why rinse I'd it sticks to your throat and eventually hardens so the have to scrape it out.  Sounds painful to Me so always rinsing or spitting it out in a tissue.  Go through a large box in 2 days and I must have 3 going open around house also.  That's how much you get and it's IS nasty & doesnt nothing for you But be an aggravation.   Good luck if you get it. V

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