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  • #96879
    bglass
    Moderator

    Hi Shellsbells,

    The adjuvant regime your son is following is an aggressive one, so it takes a lot of patience to get through.  From my own experience, as soon as the treatments stop, virtually all of the side effects clear up quickly.  In my own case, just the fatigue faded away more slowly, but it did go away.  For me, a lot of the fatigue was from the logistics of getting myself to and from the radiation center given I was working full-time, it was not entirely from the treatment itself.

    Here is my detailed account of my own experience with radiation.  I hope it is helpful.

    https://cholangiocarcinoma.org/db/search/Hogwarts/

    Regards, Mary

    #93633
    bglass
    Moderator

    Hi Katherine,

    It is great to hear you are doing so well.

    You asked to hear about experiences with radiation. Here are some observations re my five weeks of IMRT radiation with capecitabine concurrently.

    I need to preface this by saying that the center which treated me was wonderful in every way: efficient with caring, patient-oriented staff, top notch doctors and modern facilities. So my description below should not be viewed as in any way complaining about the provider.

    I found radiation tougher than chemo. It is logistically different in nearly all aspects. Chemo was once a week with some weeks skipped. Radiation was every day. Chemo appointments were long, usually a couple of hours. Radiation was in and out within 30 minutes. Chemo was slow and nurturing: here is your recliner, have some tea, bring your family, do you want a magazine. Radiation was get down to business fast. Get in there, put on a robe, zapped and done.

    The radiation made me tired but it sometimes felt like it was not the treatment, but rather getting myself there every day while I was holding down a job. For me, radiation treatment took some patience – I found the experience a little unnerving til I got used to it.

    My treatment center had the patients change into gowns. I usually had one of the last appointments of the day, and the gowns left were either extra small or extra large. I opted for extra large, which made me feel I looked like the school nurse at Hogwarts.

    The patients file in and out pretty fast as the treatments last maybe 10-15 minutes from start to finish. When you come in to the treatment room, you first lay on a table on a mold shaped to your body. The technicians move you around until the beams line up to the small tattoo dots that had been placed during the treatment planning session. Once you are in position, they leave the room, a large metal door clicks shut behind them, and they speak to you via speakers in the room.

    Soft music played in the background. A large gantry with scanning and treatment functions rotates around you. It looks like a Star Wars weapon. The first step is a scan to be sure everything is lined up correctly, then the treatment itself which involves several passes by the rotating gantry.

    In my case, I had to hold my breath during the treatments, which is something the technicians practiced with me until I could time my breathing as needed. I figured out some prayers that matched the timing of the breath holds, which made that aspect easier.

    The technicians then tell you they are done, come back in, and help you off the table. At that point, you are finished, get redressed and head home. My abdomen felt warm after treatment and initially I would crave milkshakes and was hitting McDonalds on the way home.

    Other than fatigue, which deepened over time and hung on for a few months after, I had a little bit of a reflux problem which responded well to over the counter treatment. No nausea. I generally felt fine during the treatment other than some hand-foot problems from the capecitabine. The radiation lowered my lymphocyte count quite a bit – if I recall correctly to a level considered an adverse event – but it bounced back to normal range within a few months. I was initially concerned about this, but the doctor pointed out that my lymphocytes had not stopped the cancer in the first place so their temporarily lower levels were not something to worry about.

    The center where I was treated had a nutritionist on staff who recommended a high protein diet and plenty of water.

    That is what I remember. The five weeks were tedious, but I got through it in good shape. It has been 13 months for me since I finished treatment, and I have no regrets.

    Hope this is helpful.

    Regards, Mary

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