First Time Caller.

Sprint Car Dude
Sprint Car Dude Member Posts: 181
in Head and Neck Cancer #1

Hey all,  this is great! I am 3 months out from 7 weeks of Cisplastin/35 Rad tx. I stumbled upon this by accident and read so many stories that sound all far to familar. I was/am Stage 3/4, T1N3 HPV Tonsilar. Just wanted to hop on hear and say Hello to some of the strongest people I never met!

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    welcome

    SCD,

    Welcome to the H&N forum, I am glad you are finished with treatments and think you had it correct when you said “was “ stage 3 - 4.  I had to adjust to “I had” , which is similar.

    Keep moving forward.

    Matt

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    edited February 2017 #3
    Thanks Matt, nice to see

    Thanks Matt, nice to see people have and have had the same issues that I am dealing with. Dry Mouth and Terrible taste of almost anything I try to eat. The struggle is real.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited February 2017 #4
    Sprint Car Dude said:

    Thanks Matt, nice to see

    Thanks Matt, nice to see people have and have had the same issues that I am dealing with. Dry Mouth and Terrible taste of almost anything I try to eat. The struggle is real.

    life post

    SCD,

    BUT, the struggle becomes less as systems come back on line and you adjust to your “new normal”.

    My dry mouth is very real and my taste is (now) very good, not perfect, but what is.

    Matt

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    edited February 2017 #5
    CivilMatt said:

    life post

    SCD,

    BUT, the struggle becomes less as systems come back on line and you adjust to your “new normal”.

    My dry mouth is very real and my taste is (now) very good, not perfect, but what is.

    Matt

    Perfect.

    Matt, Did you use Pilocarpine at all? Just curious is all, I having been researching it a little. Any opinion? I am a nurse buy trade, so I'm always researching everything. Congrats on the taste buds working. I dream of those days. People don't understand what a struggle it is to just eat something.

  • rsp
    rsp Member Posts: 103 Member
    edited February 2017 #6
    Can you eat?

    I am also new to the site.  My husband is 2 months post radiation/chemo and he said he is in more pain that before.  Also, he struggles to eat.  He can only eat milkshakes and has no energy.  He has lost 64 pounds so far, and I fear he will need a peg tube soon.

    Good luck to you in your continued recovery!

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #7
    rsp said:

    Can you eat?

    I am also new to the site.  My husband is 2 months post radiation/chemo and he said he is in more pain that before.  Also, he struggles to eat.  He can only eat milkshakes and has no energy.  He has lost 64 pounds so far, and I fear he will need a peg tube soon.

    Good luck to you in your continued recovery!

    Yes

    I ended up with a peg tube. It was essential to my recover for a few months when not even water would go down, let alone food or protein drinks. It will get easier eventually. But every day is a fight to find foods that are able to be swallowed. The lack of salivary glands is a killer. Hydration is everything and food is an option. Lots of bone broths will aid in his recovery. Good Luck and fight with all you have.

  • bebo12249
    bebo12249 Member Posts: 181 Member
    edited February 2017 #8
    I found Boost Very High

    I found Boost Very High Calorie (drink) very helpful when I couldn't eat. 8 oz = about 500 calories. Bought on Amazon as it was not available locally..

  • Kapital
    Kapital Member Posts: 52 Member
    edited February 2017 #9
    Pilocarpine

    My husband tried Pilocarpine early on in his recovery for his dry mouth, but found that it did nothing for him and stopped taking it after several months. He had Carboplatin x 3 and Radiation 2 years ago for stage 4 tonsil CA, HPV+. His saliva has very slowly returned, but certainly not anywhere near a normal level. He taste has returned somewhat over the past two years as well, also very slowly. He says things taste better than they did after treatment, but different. He lost 75 lbs and has kept 65 lbs off. He never had a peg tube, but did go in for IV rehydration several time in the dark days just after treatment finished. Now he carries a water bottle around most of the time and uses Xylimelt tablets at night to keep his mouth moist when he is sleeping. He feels well, enjoys life and is greatful to be cancer free. It takes a long time to recover, but things will improve over time. Good Luck.

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #10
    Kapital said:

    Pilocarpine

    My husband tried Pilocarpine early on in his recovery for his dry mouth, but found that it did nothing for him and stopped taking it after several months. He had Carboplatin x 3 and Radiation 2 years ago for stage 4 tonsil CA, HPV+. His saliva has very slowly returned, but certainly not anywhere near a normal level. He taste has returned somewhat over the past two years as well, also very slowly. He says things taste better than they did after treatment, but different. He lost 75 lbs and has kept 65 lbs off. He never had a peg tube, but did go in for IV rehydration several time in the dark days just after treatment finished. Now he carries a water bottle around most of the time and uses Xylimelt tablets at night to keep his mouth moist when he is sleeping. He feels well, enjoys life and is greatful to be cancer free. It takes a long time to recover, but things will improve over time. Good Luck.

    Thanks for the info Kapital

    I have not heard of any success stories from the Pilocarpine. I am pretty sure I am just going to skip it and stick to my water. Right now the Xilymelts dont even desolve over night. I wake up with two dry tabs in my cheeks. I have stopped those as well. Thanks for the responce, I lost about 50 lbs but have now stabilized. I unfortunately was a weight lifter and lost a ton of muscle. So I am really looking forward to getting back to the GYM once things stabilize a little more and my calories and protein intake are better. I hope the neuropathy in my feet and hand go away soon. Kind of annoying. Hey but life is good, it could be alot worse. Good Luck and its great to here survivor stories.  Thanks.

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