Radiation

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DShaw
DShaw Member Posts: 11
in Head and Neck Cancer #1

My husband has completed 19 of his 35 radiation treatments. He has completed 2 Cisplatin chemo treatments. So far he’s doing pretty good. Although his taste is pretty  much gone he’s still eating most everything. At what point over the 16 treatments will things start getting really bad?  Thanks!

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  • JAL23
    JAL23 Member Posts: 88
    #2
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    I think it’s dependent on

    I think it’s dependent on where the radiation is as well.

    im also 19 treatments in with proton beam radiation. Just finished my second cisplatin on Tuesday. Your husband sounds like he’s on a similar path as mine. I can’t say that the radiation is the worst part (it never really goes above a 4/10 in pain for me) but the cisplatin is just awful. What I have heard from the rad oncs is that it’s a bit like a cliff - the radiation keeps destroying and your body keeps healing. Eventually, the tissue can’t regenerate fast enough, which is where all the cancer fighting goodness and, unfortunately, pain comes from. The word around my clinic is that end of week six to about 1-2 weeks after treatment is where you fall off the cliff.

    The nurses have promised me I am not allowed to keep the mouth sores, so this too shall pass.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
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    do you feel lucky?

    DShaw,

    It depends on what really bad is (or means).

    I never had bad pain, just a lot of discomfort in my mouth, throat and tongue, which I used magic mouth wash for with great  success (some H&N members have less than stellar words for magic mouth wash, but I think they either do not have the “good stuff” or they did not use it correctly)!!!

    My taste buds turned against me in week three and did not return until 7 months later. I was still able to shuttle some food and lots of drinks in my mouth and down my throat to my stomach it did go.

    I had very bad neck burn around week 6 of the 7 and it was absolutely the worst pain of my time at camp H&N.  There  is Silver Sulfadiazine Cream to make everything better.

    I did not have the platinum based chemo, so I did not dance with that group (they are a nauseated bunch).

    Honestly, things are very different from normal, but you take them one at a time, keep your team in the loop, stay in the game and be positive  about a good outcome.

    Always drink lots of water and swallow often and PLEASE consume 2K to 3K calories a day no matter what.

    Matt

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #4
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    It was

    a

    It was about week 5 when the wheels began to fall off the crazy train for me. Burns intensefied about week 6 as well.

  • SuzJ
    SuzJ Member Posts: 427 Member
    #5
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    week 5 - 6

    I think I finally took pain meds weeks 5 - 6,  7 I took the increased dosages, and the 2 weeks after treatment? forget it, pain meds skin treatment (rad nurse) fluids.. 

     

    so week 6 - 10 were the worst.

     

    I had 35 rads and attempted 3 cisplatin, only managed 2 tho

  • OKCnative
    OKCnative Member Posts: 326 Member
    #6
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    Like Matt, i never suffered

    Like Matt, i never suffered from general pain and didn't take pain meds. The only time I experienced pain was when swallowing (especially when taking in calories). My worst weeks were when symptoms initially set in around week 5 and then things got worse right when treatment ended. I mostly slept weeks 4-6 and then for a week or two post treatment. I never lots my taste buds. I wish I had as the flavors the Cisplatin and mucous produced were absolutely awful.

    My worst symptom was non-stop mucous that was so thick I couldn't swallow it and I had to carry a cup everywhere and spit literally every minute or two 24/7. This led to no sleep and a decline in health for a bit. Then one day I woke up and it was over.

  • Curlyn
    Curlyn Member Posts: 189
    #7
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    Hi, I was told that it wouldn

    Hi, I was told that it wouldn't just hit me like a ton of bricks one day, but that it would be gradual. How bad it gets, depends on how broad the field, the specific anatomy targeted, and where any positive margins might be lurking. If you are being treated for HPV+ cancer, most research still points to surgery and chemoradiation as the gold standard, not wanting to risk recurrence for stage 3 and 4 (but treatment still appears to be based on where you go and patient preference, for lack of conclusive stats). If you have had surgery it can make your neck pretty stiff (so exercise). Good luck, you are there now, and it should get better soon.

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