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How much worse were side effects after your last treatment?

1982m
1982m Member Posts: 224

I am done my radiation tomorrow. I have had 14/15 whole breast radiation treatments. My skin/breast in general is holding up well. I'm a bit pink and slightly/moderately itchy along my reduction scar line. I'd say it's a 3/10 right now. Fatigue is another story. It was fine until about half way. I have days where it's 7/10. I can hardly get to radiation and back. I'm so tired, conversations are exhausting. Some days are more like a 4 or 5/10.

How much worse did side effects get for you? I keep reading/being told it gets worse before better for both skin and fatigue. None of the literature is all that specific- just says peaks at 1-2 weeks and then gets better.

Thanks ahead of time for sharing your experience!

Edit: I am 1 day post radiation. I figured I would update along the way for anyone else who finds the post. I finished treatment on a Monday. I felt like I had recouped some on Sunday and was ok Monday. Today I'm pretty tired again. Biggest complaint after fatigue is breast itching along my breast reduction scar on the underneath of the breast. Bathing and saline soaks do work well.

Edit: finished May 2nd and today's May 5th and I feel like things are starting to heal, not get worse. Fatigue is still present but local reaction's seem to be less itchy. I'm still pink but I don't perceive that I'm getting more pink. I was really worried it would get significantly worse, but I don't think that will happen. Fatigue wise it comes in waves. I'll feel normal and be excited and then it comes at me and I'll have to rest. Yesterday I went for two walks, small grocery shopping and cooked supper. That's on top of normal stuff like getting kids ready and lunches etc. It felt difficult but doable.

Edit: May 6th (4 days post radiation) I had a really good day. I'm tired but I worked the whole day and did other things.Things do not appear to be getting worse. My skin is intact. Still itchy and pink but it's not getting worse.

Edit: May 14- 12 days post last rads. Skin is definitely healing. Not very itchy or sore anymore. Slight red/tan look. Energy is still touch and go. Sometimes I have a great day and it feels all back to normal. Other days it's difficult to hold a conversation. I did go swimming 10 days out and it went fine. It definitely didn't get to much worse from the last day.

Edit: October 11th- my breast swelled up after radiation and was fairly uncomfortable for a few months. Now 5 months later it’s much better. I have a dark line on my radiated breast but it doesn’t bug me. My energy is much better too! It took awhile to get back to normal but I’m feeling pretty good now.

Comments

  • spookiesmom
    spookiesmom Member Posts: 8,149

    Seems both times after rads things just got better. The fatigue is real. You won’t be the enegerzier bunny next week. It takes time. How much time is individual. Your body has been through a lot. Is you need a nap, do it. Don’t feel guilty.

  • 1982m
    1982m Member Posts: 224

    Thanks Spookiesmom. It’s reassuring you said it just gets better. I completely underestimated radiation fatigue so coping last week was hard. Maybe as a coping mechanisms? I’m not sure.

    I appreciate your insight :)

  • cheftoast
    cheftoast Member Posts: 24

    I finished on Thursday, 16 whole-breast treatments and 2 boosts. My skin was about a 4-5/10 and it’s still cooking away — feels worse today than it did Friday. The nurses told me that would peak about five days after the last treatment and then start settling down.

    The fatigue, well, yesterday and today I’ve crashed. During treatment it was fine in the first part of the day. Then I’d need an afternoon nap and be at about 30% until bedtime. It seems counterintuitive but what really helped was forcing myself to take walks several times a day. A mile in the morning, 1.5 miles at lunch, another mile when my partner got home from work and dragged me out. Also drinking A LOT of water. I have slacked on the walking since finishing treatment and am definitely paying for it. So that’s all I can offer — take the naps you need but seize those walks when you can. And stay hydrated! Your body is working HARD.

    PS, I’m posting this curled up on the couch, but I texted a friend asking if she wanted to go for a walk. I definitely don’t (ha) but she’s into it, so now I have to force myself up…use whatever tricks you need. Congratulations on fi iahibg

  • 1982m
    1982m Member Posts: 224

    Thank you chefstoast. Your absolutely right- I need to get some steps in. I did awesome on chemo walking every day, but since then I haven’t gotten back into it. I’ll set a reasonable goal for two walks a day no matter what.

  • mle42
    mle42 Member Posts: 124

    I had 33 radiation treatments, and for me side effects (skin + fatigue) did not actually get worse after my last treatment, it just took a couple weeks to start to get better. Congrats on finishing and I hope you feel better soon!

  • quietgirl
    quietgirl Member Posts: 165

    fatigue wise things were absolutely better. I think the not running back and worth to treatment helped. I had almost the exact same number than you treatment wise 19 total and I definitely feel much more rested never worse than turning treatment. I’m not going to say my skin got worse more that it went through a natural progression that was more annoying so under my breast and on my side the skin was always redder and it did get tight and then peeled but that was already in play at the end of treatment so it just followed the natural progression those are the only two areas that peeled. I definitely still am slightly pink in those areas a month out from radiation. I’m not saying it won’t get worse I think the longer your treatment the more likely that might happen. But I was really good about making sure I kept moisturizing those first two weeks after treatment ended

  • 1982m
    1982m Member Posts: 224

    Thank you both mle42 and quietgirl. I realize it’s individual but I feel a bit relieved to know it’s not guaranteed to be significantly worse.

  • Tsohl
    Tsohl Member Posts: 24

    mle42–. I am 2 sessions into my 34 treatments. Most people on this website seem to have way fewer treatments. I keep hearing that side effects can begin about two weeks after starting treatment. Does that leave me with five weeks of increasingly intense Fatigue and skin issues? What was your experience


  • spookiesmom
    spookiesmom Member Posts: 8,149

    My first rounds of rads, was 35 blasts. The second time on the other side was 28. Each RO has their favorite skin treatment. My last one said to use calendula and pure aloe gell he also said to use aquaphor, I tried, it’s sooooo greasy I quit. I found both at Walmart.

    The fatigue is cumulative. By the end it’s all you can do to drag your tired self to the car. But it does get better. image

  • 1982m
    1982m Member Posts: 224

    tshol- Do you know how many grays your getting? You may be getting the same dose but just over a longer period? I'm getting 50Gray over 15 days.

    I'm just thinking you may not feel the impact as quickly as it's a combination of dose over time? Just some thoughts….

    I've been using Glaxal base and saline compresses (midway). I really like that Glaxal base isn't greasy. I'm not staining anything by using it. The saline compress has helped when I get itchy. I bought two Calvin Klein bras and wear them inside out (so the seams don't bug me). Nothing fancy.

    I hope it goes well for you!

  • alicebastable
    alicebastable Member Posts: 1,934

    I had 33 treatments. My only side effects were my collarbone area getting reddish-pink, my skin over the whole area being a bit dry, and needing a nap every day. Aloe and Aquaphor took care of the skin issues, and allowing myself the naps helped the other. I'm not sure if it's a good idea to go in expecting side effects, since they don't happen to everyone and they vary greatly if they do show up.

  • lw422
    lw422 Member Posts: 1,375

    Same as Alice; I had 33 treatments and no severe side-effects during or after treatment. I also had "boosts" at the end of treatment. My skin got pink and discolored around week 3 but never got terrible or painful. Everyone is different so it's hard to predict your outcome. Good luck and try not to worry about it. Most SEs are short-lived. Keep yourself hydrated and rested. Good luck!

  • cheftoast
    cheftoast Member Posts: 24

    I'm four days post-rads and the soreness is already settling down. Now I'm on to itchy, but even that isn't so bad. Antibacterial soap, Aquaphor, naps, and daily walks are doing the trick.

  • mle42
    mle42 Member Posts: 124

    Tshol, my experience was that I felt basically normal for the first ~3 weeks, then yes, gradually and steadily increasing skin issues and fatigue for the rest of treatments. But my skin held up really well - got pink and tender and sore and ITCHY, but zero open wounds. And at it's worst my fatigue was of the "It's really hard to focus on work, I need to take a nap then hang out on the couch and read a book" variety, not the "I can't even move" variety. So, yes, the SEs did increase throughout the whole 7.5 weeks of treatment. But because shorter treatment schedules are often "hyper fractionated" (similar total dose of radiation given over a shorter period of time), don't assume that you will necessarily have double the worse experience of people getting 15 treatments.

    For my skin, I used Radiaplex 3x daily (recommended by RadOnc) and then aquaphor at night. Added in steroid creams and lidocaine creams to deal with extreme itching the last couple weeks.

  • spookiesmom
    spookiesmom Member Posts: 8,149

    There is aloe with lidocaine in the sunscreen shelf. It helps with the itch, aloe is always good for your skin.

  • 1982m
    1982m Member Posts: 224

    chef toast- thanks for the update! I finished today but did notice the itchiness over the weekend increasing. I find a bath and saline compress does help.

    I'm hopeful it doesn't get to much worse and healing can start. After 3 months of chemo, three breast surgeries and 15 days of radiation I'm very excited to start feeling better!

    Thanks all who posted! Very helpful to know a bit about what’s coming in the next couple of weeks :)

  • sallyred
    sallyred Member Posts: 24

    I appreciate all the information shared here! My office has a big annual conference set for the week I should finish radiation treatment (20 treatments, then 1 boost, starting May 17), and a couple of other opportunities that I'd hate to miss. I've been hesitant to commit to anything because I've heard so much about the radiation SE, both during and after.

    I think I'll take lw422's advice and (try to) not worry about it - so far, I've exceeded my own and my doctors' expectations, and expect to handle this the same. I am so sorry for those who have really suffered - even if that's my experience, I can take strength from the perseverance they've shown. (I still have some work to do to get my head on straight, but I'm doing it.)

  • cheftoast
    cheftoast Member Posts: 24

    1982m, congratulations on finishing!! I’m a week and a half out now, still doing Aquaphor twice a day, but everything is settling down a lot. I am still very tired, but I think part of that is not having cancer-related anything for the first time in FIVE MONTHS. We have all been through a lot. Enjoy the reprieve and take sweet care of yourself!

  • cheftoast
    cheftoast Member Posts: 24

    sallyred, one nice thing about radiation is that you’ll see many of the same people every single weekday, and their job is to tend you. If a problem starts cropping up, you can always flag a nurse and get help from them. They are full of solutions! Knowing this really helped my anxiety once I was in the process. Our department even had an oncology social worker on call. I had a similar work situation and she helped me sort out some feelings and realities. It’s hard to believe as we’re hurtling through it trying to be heroes, but most people understand the urgency of cancer. Hope you can go to your event — and you’ll know more as the weeks unfold. Your body’s number one focus will be healing from everything that’s happened. Good luck!

  • 1982m
    1982m Member Posts: 224

    Thanks cheftoast! Your just ahead of me so I appreciate your updates.

    I’m 1 week, 2 days out now. My breast started hurting yesterday. I’ve been taking Advil and Tylenol for it. It’s. Not surface level though- it’s not the skin. To me it feels like when I have a clogged duct when breastfeeding. I think it’s swelling. I can see it’s bigger then the other breast still.

    My energy is tricky. I have days where I feel great, but then I try to do it all and the next day I feel completely beat.

    Sallyred I hear you about not being sure about commitments. I’m even not sure some of June’s activities. I have some bigger commitments plus leisure travel.

    I do wish I took 2 weeks off. The last week of radiation and the week after. I was exhausted and pushing myself. The timing was bad bc I had lots of meetings and next year planning and it was hard to not show up so I just did.

    I’m glad this thread was helpful! I do feel like it never got significantly worse. My T junction from my breast reduction was the worst. It never opened but it feels drier now then on the last day. If I was a 3 or 4/10 for skin on the last day I feel like I would still be a 4/10. Fatigue was worse the day after and now it’s day by day. Some days really good, some days medium. Never as bad though as that last week of radiation.

  • sallyred
    sallyred Member Posts: 24

    Thanks cheftoast and 1982m. The perspective of your experiences is really helpful and appreciated.

  • bong
    bong Member Posts: 40

    Hi - just wanted to add my two cents. After abt 33 sessions of 6500 cgy of radiation, I had some skin tightness, redness, rash and fatigue throughout. Nothing that was overwhelming. Moderate all in all.

    My wbc and lymphocyte counts tanked though and one month after radiation, they are now somewhere back in the low end of normal.

    Also had a cough which stopped prmuch immediately after radiation.