Starting Radiation, what to expect.

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donnahamblin
donnahamblin Member Posts: 47
in Head and Neck Cancer #1
My husband is starting radiation tomorrow, 5 days a week for 6 and a half weeks with chemo still once a week. He has stage 4 tonsil cancer. He has been doing chemo Cisplatin, Taxotere and the (FU pump 24-7) for the past 2 months. He also has Parkinsons Disease and is 52 years old. The chemo was just horrible on him making all of his PD symptoms 10x worse. We are a bit nervous as what to expect now with his radiation about to begin. Has anybody had PD and gone through these treatments that can give us advice on what to expect? The doctors are stuck on stupid and don't have the answers on why his PD symptoms got worse. Please let me know if you have any advise....thank you so much everyone in advance. I really think this site has helped us out more than the doctors ever could:-)
Donna

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  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
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    I'll take a stab at this
    If you do a google search for parkinsons disease + carboplatin, a few case reports pop up which are similar to your husband's reaction. This would suggest his situation is rare, likely reportable. However, it isn't as though this has never been seen before.

    I would expect his response to radiation will be just like the rest of us, however, and I mean this in a good way. He won't like it, but it won't exacerbate his parkinson's disease. Whatever the deal was with the carboplatin, it is a systemic effect. Fortunately, the radiation is a completely local phenomenon.

    Best wishes to the two of you.

    Pat
  • donnahamblin
    donnahamblin Member Posts: 47
    #3
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    longtermsurvivor said:

    I'll take a stab at this
    If you do a google search for parkinsons disease + carboplatin, a few case reports pop up which are similar to your husband's reaction. This would suggest his situation is rare, likely reportable. However, it isn't as though this has never been seen before.

    I would expect his response to radiation will be just like the rest of us, however, and I mean this in a good way. He won't like it, but it won't exacerbate his parkinson's disease. Whatever the deal was with the carboplatin, it is a systemic effect. Fortunately, the radiation is a completely local phenomenon.

    Best wishes to the two of you.

    Pat

    Thanks Pat. I will do that.
    Thanks Pat. I will do that. Is carboplatin the same as cisplatin? I Have been searching with no success. I expect radiation will be the same as everyone I just don't want it to be worse due to his PD. Thanks again:-)
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
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    Starting tomorrow.
    Well, I would try to be as pro-active as possible with trying to manage side effects from the get go. Have you looked at the HNC Superthread? I would talk to my doctors about the benefits of L-Glutamine, and show them the research and ask them if it's ok that I use it from the beginning of treatment to hopefully prevent serious mucusitis and mouth sores. I would have a prescription bottle of magic swizzle ready and standing by, and I would have a cream like Radiaplex to use everyday from the beginning. I would make sure I had and used all the stuff for my dental and oral care and I had my baking soda, salt and water mix and peroxide to use from day one.

    You cannot control what side effects he will have, but if you try and stay on top of them from the beginning you may have some control over their severity.

    I would also make sure you line up nutrition and pain management as well. Kinda hoping you've done all that already since he starting tomorrow. Figured I throw that in there. You should kinda have a game plan already with all these things with your treatment team.
  • jtl
    jtl Member Posts: 456
    #5
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    Hopefully he had a dental
    Hopefully he had a dental check-up and if so I would just be sure to brush multiple times per day and be sure to use a prescription fluoride toothpaste. Initially, not much will change, in my case I didn't lose taste or saliva for a few weeks. Which reminds me, tell him to eat everything he loves while he can enjoy it and pack on some weight. You didn't mention a PEG so I assume he does not have one. All the more reason to keep the nutrition on the front burner so to speak. At some point he will want the prescription mouth wash and likely some pain meds for the sore throat. Personally, I think the worst part is adjusting to the changes toward the end of the treatment. Best of Luck.
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
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    donnahamblin said:

    Thanks Pat. I will do that.
    Thanks Pat. I will do that. Is carboplatin the same as cisplatin? I Have been searching with no success. I expect radiation will be the same as everyone I just don't want it to be worse due to his PD. Thanks again:-)

    chemically very similar
    carboplatin and cisplatin are closely related drugs, with similar side-effect profiles. Carboplatin has fewer side effects than cisplatin.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
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    Same Protocul
    I don't have the PD issues, but did have the same Tx plan....

    Nine weeks of Chemo (three week cycles), Cisplatin, Taxoter and 5FU via the pump. Then seven weeks of concurrent weekly Carboplatin and daily rads.

    Like LTS mentioned, the Carboplatin is sort of a lesser version of Cisplatin, but with not as bad effects reaction wise.

    I didn't have any problems with Carboplatin....

    STGIII SCC Tonsils HPV+ and a single lymphnode effected.

    Dx January 2009, finished Jun2009, clean and clear....

    Thoughts and Prayers for your success...

    Best,
    John
  • donnahamblin
    donnahamblin Member Posts: 47
    #8
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    sweetblood22 said:

    Starting tomorrow.
    Well, I would try to be as pro-active as possible with trying to manage side effects from the get go. Have you looked at the HNC Superthread? I would talk to my doctors about the benefits of L-Glutamine, and show them the research and ask them if it's ok that I use it from the beginning of treatment to hopefully prevent serious mucusitis and mouth sores. I would have a prescription bottle of magic swizzle ready and standing by, and I would have a cream like Radiaplex to use everyday from the beginning. I would make sure I had and used all the stuff for my dental and oral care and I had my baking soda, salt and water mix and peroxide to use from day one.

    You cannot control what side effects he will have, but if you try and stay on top of them from the beginning you may have some control over their severity.

    I would also make sure you line up nutrition and pain management as well. Kinda hoping you've done all that already since he starting tomorrow. Figured I throw that in there. You should kinda have a game plan already with all these things with your treatment team.

    Done all of that and we are
    Done all of that and we are currently half way through the rads. I just started to tube feed him yesterday:-( Crossing my fingers that he won't suffer much more than he is now. Thanks for the help.
  • donnahamblin
    donnahamblin Member Posts: 47
    #9
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    jtl said:

    Hopefully he had a dental
    Hopefully he had a dental check-up and if so I would just be sure to brush multiple times per day and be sure to use a prescription fluoride toothpaste. Initially, not much will change, in my case I didn't lose taste or saliva for a few weeks. Which reminds me, tell him to eat everything he loves while he can enjoy it and pack on some weight. You didn't mention a PEG so I assume he does not have one. All the more reason to keep the nutrition on the front burner so to speak. At some point he will want the prescription mouth wash and likely some pain meds for the sore throat. Personally, I think the worst part is adjusting to the changes toward the end of the treatment. Best of Luck.
    John

    Thanks John. Hes got the PEG
    Thanks John. Hes got the PEG and started using it yesterday. Everything tastes horrible and hurts right now. Hes got pain meds and magic MW lined up. Hes half way through the rads......hoping this will all end soon.
  • donnahamblin
    donnahamblin Member Posts: 47
    #10
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    Skiffin16 said:

    Same Protocul
    I don't have the PD issues, but did have the same Tx plan....

    Nine weeks of Chemo (three week cycles), Cisplatin, Taxoter and 5FU via the pump. Then seven weeks of concurrent weekly Carboplatin and daily rads.

    Like LTS mentioned, the Carboplatin is sort of a lesser version of Cisplatin, but with not as bad effects reaction wise.

    I didn't have any problems with Carboplatin....

    STGIII SCC Tonsils HPV+ and a single lymphnode effected.

    Dx January 2009, finished Jun2009, clean and clear....

    Thoughts and Prayers for your success...

    Best,
    John

    Sounds like exactly what my
    Sounds like exactly what my husband has. He is currently half way through the rads and carboplatin doses. Just started the PEG feeding since his throat is sore and he has no taste. You are right, the Carboplatin is much easier on him and we are so thankful.

    How long after your last rad until you could eat or at least taste? Thanks
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #11
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    donnahamblin said:

    Sounds like exactly what my
    Sounds like exactly what my husband has. He is currently half way through the rads and carboplatin doses. Just started the PEG feeding since his throat is sore and he has no taste. You are right, the Carboplatin is much easier on him and we are so thankful.

    How long after your last rad until you could eat or at least taste? Thanks

    Donna
    I had 35 rad treatments in 1998 and was able to eat solid food all the way through. Lucky me. I'm now being treated for a secondd time. I'm 20 sessions done out of 34. My mouth is moderately sore, especially my tongue. My swallowing is slowing down and I don't know if I'll make it the entire treatment without a tube, but for now I'm managing to get in enough calories to keep my weight up.

    If a tube is needed, it is needed, that's all there is to it. Now long it takes to heal enough to eat after rads is a 64 dollar question. For some, it is pretty quick. For others it is a long time. It just has to go according to a plan we can't design ourselves.

    BTW, can anyone swallow if they've just used magic mouthwash? LOL, I've learned to avoid coating my entire throat with that stuff. When I do, I can barely talk and I can't swallow at all for at least a half hour after. Dang that stuff works.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
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    donnahamblin said:

    Sounds like exactly what my
    Sounds like exactly what my husband has. He is currently half way through the rads and carboplatin doses. Just started the PEG feeding since his throat is sore and he has no taste. You are right, the Carboplatin is much easier on him and we are so thankful.

    How long after your last rad until you could eat or at least taste? Thanks

    Varys...
    For me, I think it was about a month or so post rads...creamy seafood pasta. Easy to slide down the pie hole.

    I didn't have a PEG so starting about where he is, I started taking in only Ensure Plus, water and a few DelMonte Sliced Peaches in Light Syrup (to keep the swallow muscles working)...

    I'd use the numbing solution (for me Larry's #2) to numb the throat for a few minutes, big glass of water, two Ensures, a few peaches, more water and then a ground up Percocet in water for the pain to come. That was my daily regime (several times a day) for about 6 - 7 weeks.

    I'd also take a warm shower after eash feeding...what ever reason, the warm/hot water would help with my pain management....

    So, basically I started eating a few things a month or so after...taste and saliva took much longer.

    I started getting more and more taste back within the first six months or so, but it took two years to get 100% back.

    Saliva started back within a few months, to get around 95% back took well over 18 months for me. I only dry out now at night...the rest of the time it's back to normal.

    Everyone is different and heal/respond as such....

    I had pain in my throat, but others at it much worse, some the same and a few had it easier.

    Just keep trying things as for taste, if they aren't good now, try again in a month or two...

    Best,
    John

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