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Summer/Fall 2024 Radiation Support thread

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Comments

  • foggydew
    foggydew Member Posts: 14

    It takes practice but I’m still struggling with it. You’d imagine they’d have a better way to protect our heart and lungs.

    I’m on day 20 (last day). All parts of hospitals are like assembly lines in my opinion. Can’t wait to get away from the hell hole I’m attending.

  • musiclover1
    musiclover1 Member Posts: 10

    Hi. I asked them to coach me through it today. And not use the visual bulls eye target as I think I was tensing up my body too much to get the ball in the target . Much better. Counting the days.

  • tigglewinkle
    tigglewinkle Member Posts: 40

    I found it was useful to ask the technicians to count down my breath holding. It got easier.

  • terilh
    terilh Member Posts: 4

    During the simulation/staging, they counted down (10 seconds left, 5 seconds left…) and that was helpful. During the actual treatment, they didn't count so I tried counting to myself but that made me too anxious. After that first time, I just concentrated on the music they were playing and that helped. It got easier. Hang in there.

  • grammie2
    grammie2 Member Posts: 244

    Hi all. Haven't posted much here but just finished 16 treatments. I too found the breath holding frustrating and a tad scary. I was always nervous and tense and terrified I would breath before I was supposed to. But one of the techs explained that if I did let out the breath, the treatment would stop. As well as if I breathed in too deeply, it would start. That happened a couple of times and I had to let out a little air. I kept my eyes shut during treatments. So far just pink skin in some areas but RO said it could worsen up to 10 days from the last treatment. Those of you still getting treatments, hang in there. You will get through it!!! Take care!!!

  • cbee53
    cbee53 Member Posts: 3

    I made it through the mapping in the prone position last week. It wasn’t the most comfortable being on my stomach, but it wasn’t as bad as I thought it would be. They put 6 tattoos on my back to line me up for radiation. I will have a simulation on Monday 12/2 and have the first of 19 sessions starting 12/3 with my last session on 12/30. At my radiation oncologist’s recommendation I ordered a cream called Biafine to use after each treatment and at bedtime. I’m ready for this next step.

  • foggydew
    foggydew Member Posts: 14

    My inhalation instructions were over a loud speaker. They appear to do it differently in different countries.

    I was offered a cream for my skin, but it contained many toxic ingredients which probably wouldn’t be good for a cancer patient, so I bought my own.

  • purpletiger
    purpletiger Member Posts: 20

    Hoping everyone here is recovering well from radiotherapy. Just wanted to share what has been helpful for me in case it helps others. I did 20 sessions plus 5 boosts and I'm now 1 week out from my last session.

    I had a few areas that turned red during my last 2 weeks of sessions especially on my back close to my shoulder where you don't necessarily think it will show up. As soon as I saw the redness, I started doing 3X a day saline soaks. Made the mixture myself (water + dissolve salt). Wash your hands, then with a clean cloth soak it in the saline solution. Put it on the skin for 10 minutes. Let it air dry and the nurse gave me barrier cream to use on top after it dries. Use a fresh cloth each time and make a fresh batch of water daiily. I've been doing this 3X a day and after 2 weeks the redness has gone down a lot. It's a little itchy but tolerable.

    I also have had occasional pains in my breast but it goes away pretty quickly and doesn't interfere with my sleep. It's gotten much less in the past week.

    I started the moisturizing regime 2 weeks before radiation started and will keep doing this for another week or so: Ceravae cream (not lotion) 3X a day and at night time I put Aquafor over everything. Also testing Calendula cream over some sore spots that are a little red.

    The fatigue was hardest for me but it's gotten better the past few days. I kept working throughout treatment; however, I can work from home so I can be flexible. I try hard to drink a lot of water every day and exercise by walking outside daily (7 km walk - this is what I used to do before I had cancer) and 3X a week gentle strength training. All of this has helped with the fatigue but I still have to go to bed earlier than usual.

    I've also been taking L-Glutamine which I heard helps with the side effects. No idea if it worked but since I had minimal side effects I'm going to keep taking it. It's also supposed to help the neuropathy I still have from chemo which is also improving gradually.

    In about 1 week I'm going to resume scar massage where my lumpectomy was because that area still has some hard areas. I was told to stop during radiation where the area may be tender and then I start Tamoxifen which I hear is a whole other "adventure".

  • terilh
    terilh Member Posts: 4

    Hi everyone, this group has been helpful to me so I too wanted to share my experience. I finished my course of radiation treatment 2 weeks ago.

    To give some background, I was considering 2 different places to receive my radiation treatment. The one treatment center near me gave me the option of 20 sessions, 5 days a week for 4 weeks, or once a week for 5 weeks. The other center was at the hospital 2 hours away where I had my lumpectomy and the doctor said I'd be eligible for three different regimens: 15 sessions for 3 weeks; once a week for 5 weeks; or once a day for 5 days. The radiation location near me did not offer the deep breathing inhalation treatment (DBIT), but the hospital did. I chose having my treatment at the hospital 2 hours away because I wanted to have the DBIT. This was based on research I had done on the DBIT and on a comment the local doctor said about wishing it were offered here locally and asking if I had heart problems. (I don't but I have a family history of heart issues and I was having whole breast radiation on my left breast.) I just felt more comfortable with the radiation oncologist at the hospital, so we rented a place near the hospital for a week and I had the accelerated treatment of 5 sessions in 5 consecutive days. I mentioned in another post that the first day DBIT was a little more challenging because I was nervous, but it got easier as I concentrated on the music instead of counting down the seconds. The technicians were very helpful and encouraging.

    I started applying the lotions about a week before treatment began: Aquafor at night and Miaderm about 3x/day, as was recommended by the doctor. I continued the lotions during treatment, but not 2 hours before treatment, and I'm still applying the lotions 2 weeks after treatment ended.

    Knock on wood, I've had very minor side effects. I've had no fatigue and no skin discoloration. I feel a little soreness in my chest at times and sometimes it itches internally, but that's about it. I followed some of the suggestions by this group, including staying hydrated during treatment, staying active by walking several miles per day, drinking tart red cherry juice, and consuming extra protein. In anticipation of having skin tenderness, I purchased Harper Wilde bralettes recommended by some people on this group, which I had never purchased before. The sizes were crazy! I wear a regular bra size 36B, and ended up keeping the Bliss bralette size XXL and the Bliss Triangle bralette size L. They're very soft, but given that I didn't have any skin irritation I probably didn't need either. I mostly just go braless.

    So overall, as many here have commented, radiation treatment really wasn't that bad. The anticipation beforehand and the stress in trying to decide which regimen to select and where to have the treatment were a lot worse than the actual treatment or side effects. I know others have different experiences, but this is what I experienced.

    Tomorrow I meet with the medical oncologist to determine which aromatase inhibitor drug she recommends I start taking: Aromasin, Femara or Arimdex. I'm ready for the next adventure! Fingers crossed!

    Best of luck to everyone!

  • grammie2
    grammie2 Member Posts: 244

    Hi everyone! I completed my 16 treatments 11/25. I sympathize with all the folks talking about the breath holding. I was so nervous at all of my appointments even though the techs assured me that if I did breath during a "zap" it would stop. It seemed my breath hold time varied. Maybe from the time the tech told me to take in a breath and the actual zap time?? But lots of hugs to you who are being treated. I feel ya!!

    So post last radiation treatment about 5 days, I've developed intense itching. I can't explain it other than it feels deep. Near my lumpectomy scar (and seroma that I developed post lumpectomy). Seems worse at night and chalking that up to I pay more attention to it. I did take benadryl last night and it seemed better. Hate benadryl so hope I can figure out an alternative. Anyone else that had severe itching? My skin is a sunburn/kinda tan color with no peeling so far. Keeping lots of lotion and also using the prescription lotion prescribed by RO. My MO said the itching is coming from cells repairing after radiation. Any thoughts and recommendations appreciated!!!