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

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 talking about that you are recently experiencing is on swallowing or something ese?

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.