Proton radiation therapy (Procure) questions ( 2nd time getting RT)

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Hello all ! just discovered this board after my husband being initially diagnosed with Base of tongue HPV positive cancer 4 years ago .Well after being free of cancer 39 months his cancer has reoccurred ( maxillary sinus and some muscles and the base of skull again..Clivus ) .My husbands original cancer was very extensive and received induction chemo followed by chemo radiation ( IMRT at Sloan ) ...suferred greatly with radiation fibrosis , etc post treatment but was adjusting to the new normal ..After months of tests, and  some chemo he is finally starting pro ton treatment Monday the 27 th ...His IMRT was brutal, his neck burned badly , became weak hospitilized for 10 days, 4 week stay in manhattan Hotels.  Is proton therapy any more tolerable ? ...he has a peg placed in sept and has very severe trismus since May/June . Any advise and experience appreciated.  

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  • Nextom
    Nextom Member Posts: 6
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    My experience with Protontherapy

    Hi Joyce,

    I‘ve had six weeks of Protontherapy over the summer (my first exposure to radiation therapy). I was scared shitless before it began, but then later found that the treatment itself was not so bad. Even my burns at the end seemed to be a bit less terrible than I had expected. While I was getting the treatment, I stayed in a clinic for cancer-patients in general. At one of his visits, the director told me that he has been seeing all kinds of patients over the years, coming from conventional radiation as well as from Protontherapy. And he assured me that I made a good choice with Protontherapy, as he observed that the patients from conventional radiation generally look much worse than the ones from Protontherapy.

    All in all, I felt that Protontherapy was quite doable, even the dreaded time after the treatment. However: That was until last week (about 16 weeks after the end of treatment). But now, suddenly the painlevel has increased dramatically. Before, I hardly needed any painkillers; now I suddenly had to take Ibuprofen round the clock. And since yesterday, I am even taking Fentanlyl, as the pain has become really bad. But I was told, that his would last only a few weeks. I hope, that‘s true. Now, I‘m in week 4 of that new pain-phase.   

    I wish your husband all the best.

    Thomas

  • LPOH
    LPOH Member Posts: 2
    edited December 2017 #3
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    Nextom said:

    My experience with Protontherapy

    Hi Joyce,

    I‘ve had six weeks of Protontherapy over the summer (my first exposure to radiation therapy). I was scared shitless before it began, but then later found that the treatment itself was not so bad. Even my burns at the end seemed to be a bit less terrible than I had expected. While I was getting the treatment, I stayed in a clinic for cancer-patients in general. At one of his visits, the director told me that he has been seeing all kinds of patients over the years, coming from conventional radiation as well as from Protontherapy. And he assured me that I made a good choice with Protontherapy, as he observed that the patients from conventional radiation generally look much worse than the ones from Protontherapy.

    All in all, I felt that Protontherapy was quite doable, even the dreaded time after the treatment. However: That was until last week (about 16 weeks after the end of treatment). But now, suddenly the painlevel has increased dramatically. Before, I hardly needed any painkillers; now I suddenly had to take Ibuprofen round the clock. And since yesterday, I am even taking Fentanlyl, as the pain has become really bad. But I was told, that his would last only a few weeks. I hope, that‘s true. Now, I‘m in week 4 of that new pain-phase.   

    I wish your husband all the best.

    Thomas

    Hi Thomas the pain you are

    Hi Thomas the pain you are talking about that you are recently experiencing is on swallowing or something ese?

     

     

  • stevenpepe
    stevenpepe Member Posts: 234
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    I had both IMRT and proton

    I had both IMRT and proton radiation from ProCure. Proton therapy is more focused than IMRT. I had it in one spot just under the mandible on the right side. I tolerated both well but 2 rounds of radiation left my neck very stiff from fibrosis. It appears I have Trismus and damage to the masseter muscle on the right side. I go through tight spasms numerous times a day and my mouth no longer opens more than 2 finger widths (should be 3). It sucks but I'm cancer free and that's all that matters. I don't take medications. Unless it's excruciating, which it's not, I believe they cause more damage in the long run. Good luck with future treatments

  • Nextom
    Nextom Member Posts: 6
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    16 weeks after protontherapy

    Hi all,

     

    in the last weeks I have been finding it increasinigly difficult to sleep, for several reasons. One is, that the pain medication (usually Ibuprofen in change with Novalgin) only last 4 hours. And secondly, what‘s worrying me even more, is that I constantly wake up because my airways become blocked. And that again comes from the rather extreme swelling of my throat and the sorrounding area, and probably also my tongue and mouth. I also have developed a severe trismus and have been working the the Therabite-device for a few days. (I can‘t say that it has helped much, yet).

    Due to the lack of good sleep, I‘m constantly tired throughout the day and even spent the last three days in bed completely, more vegetating than living.

    My biggest worry right now is that I may have to get my tracheostoma re-opened and would have to live and breathe again with that tube in my throat. I‘ve already done that for 6 months and it was just plain horrible.

    My other worry is, why that much pain and swelling at this late point in time. It seems unusual, so long after the proton treatment. It also surprised my doctors there, so that they ordered an early PET-scan … which came out inconclusive. They can see the swollen area, but don‘t know what causes it. An Thursday I will have another phone-conversation with their radiologist.

     

    By the way, the pain is not on swallowing (I don‘t need to swallow, since I am on a PEG), but it‘s more like the entire area that was affected by the beam is still in shock. A good part of the pain seems to come directly from that spot where the tumor had been.