Completely exhausted after first radiation treatment

Hello,

Writing because I'm so surprised at how my body is reacting after my first rads session. Slept 12 straight hours then can't seem to stay awake today from yesterday's treatment.

I've been taking protien powder, protien bars, lots of lentils, beans, everything. Even tried to work out since I saw it recommended here.

Has anyone else experienced this? Wondering how I'll get through three weeks.

Thank you for being here and any advice you may have.

Comments

  • sonya16
    sonya16 Member Posts: 72

    janehicks,


    I just finished 5 weeks of rads to both breasts and lymph nodes on one side. For some reason I also found the first week difficult with regard to fatigue and I wasn’t really expecting that. However it seemed to fluctuate although the fatigue has not been terrible. Everyone reacts differently though, at least that’s what I’ve been told.

    The protein in your diet is very important and make sure you drink a lot of water which I’m sure you already know. For me, I found that taking an hour or so every day and putting my feet up helped a lot with the level of fatigue. Those days that I did try to power through I was definitely more fatigued. just listen to your body and rest when you’re tired.

    Before you know it you will be finished with the rads and it will all be behind you. I know how daunting this whole process is. I wish you the best and please know that there are so many of us that are there for you.




  • maggie15
    maggie15 Member Posts: 1,393

    @janehicks , Radiation causes fatigue since it damages the DNA in the cells. The cancer cells can't repair themselves very well but the healthy ones need extra energy to recover. As Sonya mentioned protein, hydration and rest are all important.

    Sleep as much as you need to. I ended up with a weird combination of fatigue and insomnia so my RO sent me for acupuncture which helped me sleep more. Exercise does help but something less intense like walking or yoga rather than a tough gym workout is what is recommended.

    The fatigue often continues beyond the end of treatment. Generally it goes away somewhere between a couple of weeks to a couple of months. My treatment (breast and nodes) lasted six weeks so I gave it three months before investigating the persistent fatigue. It turned out I had developed anemia so check with a doctor if it lasts beyond the usual time frame.

    I hope the rest of your treatment goes well. I never had any concerning skin reactions so hopefully that will be the case for you, too.

  • janehicks
    janehicks Member Posts: 50

    sonya16 

    Thank you so much for responding and sharing your experience and advice. And congratulations on finishing radiation! You must be so relieved.

    It's an enormously helpful to hear when someone has had the same experience, although I'm sorry you had to also deal with the fatigue. I kept thinking there was something wrong with me to feel so tired so soon.

    I'll absolutely listen to my body, kick back when needed (instead of push through which is my normal method) and drink tons of water (as well as keep on the protein.)

    I hope the rest of your treatment, if there is more needed goes smoothly! And thank you again!

  • janehicks
    janehicks Member Posts: 50


    maggie15

    thank you kindly for your response, sharing your experience, and the suggestions! The fatigue hit me so hard, I was wondering if something else was going on. I'll stick to gentler exercises and will be on the look out for anemia.

  • threetree
    threetree Member Posts: 1,775

    JaneHicks - I didn't experience the level of exhaustion that you describe after my first rads session, but I did get increasingly fatigued throughout my 5 or 6 weeks (can't remember how many). I finished in the middle of November 2019. I remember having a good pretty good Thanksgiving that year and by then, I could feel noticeable improvement. By Christmas of that year, I was great, so it does get better pretty quickly after. The big downer for me was that after feeling so great around Christmas and New Year's, I had to start the AI in January and went back to feeling not so good. I'm afraid I don't have any sort of dietary or exercise tips for you. I seem to remember I ate normally, and just "rolled with" the increasing fatigue, knowing that it had an end in sight. This first session might have been a fluke, and while the others will still likely make you tired, maybe not so much. Here's hopin'!

  • janehicks
    janehicks Member Posts: 50

    Thanks so much for your response, threetree. I'm glad you were feeling better around the holidays but sorry you got smacked back down by the AIs.

    I think rolling with it is a good way to go. It's hard to resist not pushing myself but I'll keep your advice in mind that the end is in sight. (And will try not to think about the AIs which I'm dreading.)

  • janehicks
    janehicks Member Posts: 50

    maggie15 wow, I'm now experiencing the insomnia. I mean, already had it but it's a mind-blowing variety of waking up at midnight and staying awake until morning. Wonder why rads would cause this.

    I'll follow your lead and look into acupuncture! Thanks again.

  • threetree
    threetree Member Posts: 1,775

    JanHicks - I forgot to mention in my previous post that I am assuming you got my PM. It's not that I'm looking for a reply, it's just that this new format is a mess and I have no idea what works and what doesn't anymore. Also, I hardly log in anymore, so if anyone sends me any PM's I may not seem them for days or weeks. I have no way to know if anything I send to anyone actually reaches them. I also don't get any notification emails from BCO about any of this anymore, so there's that too. Just wishing you well, and please keep us posted (if you have the energy) about how the radiation treatments play out. I really didn't get more than a "basic sunburn" either, so hopefully you will have minimal side effects and before you know it, this will all be behind you (smile).

  • janehicks
    janehicks Member Posts: 50


    threetree

    Glad you wrote about that. I didn't receive your PM!

    Let me do a little fiddling with my settings and see if that works. Thank you kindly for writing me personally! I'm so sorry that the connection wasn't made. Hopefully, I can find what you kindly took the time to write.

  • threetree
    threetree Member Posts: 1,775

    JaneHicks - I'm so glad you let me know! I was afraid you might think I was hounding you for a reply or something - not at all! I'm just not sure about anything on this site anymore. I responded to your PM in the box where it said "reply" and then I hit "send". I assumed nothing else would be necessary, but sure enough, looks like I was wrong. Please do let me know if you find the message. Thanks so much!

  • cowgirl13
    cowgirl13 Member Posts: 782

    I'll never forget how tired I was after my first radiation treatment. I mean as soon as I got home I fell in a deep sleep. Have no idea why that happened so soon.

  • nightengale1
    nightengale1 Member Posts: 6

    Thank you all for your comments. I will have the radiation "mapping" appointment next Friday and will start my radiation treatments the following week. I will definitely make sure I increase my water and be prepared for any fatigue that may happen. Great information as I prepare for this next step in the process.

  • moderators
    moderators Posts: 8,652

    Welcome, nightengale1! We're so sorry you find yourself here, but we're glad you've joined our community and hope this place can be a source of support for you as you begin treatment. Best of luck on your radiation treatments, please check in and let us know how you're getting on. We'll be thinking of you!

    The Mods

  • janehicks
    janehicks Member Posts: 50

    cowgirl13 thanks for your response! Sorry you went through that but it helped me a great deal to know I'm not a freak. I hope you are doing well!

  • janehicks
    janehicks Member Posts: 50

    nightengale1 best of luck to you! I've geared up with plenty of creams to hopefully keep from burning. Started with Auqafor the week before, several times a day, now using Calundula cream and am on the search of Miaderm. (Thank heavesn for this site because my doctor never mentined anything!)

  • greenbean2468
    greenbean2468 Member Posts: 21
    edited June 2023

    Janehicks: I'm halfway through my radiation and I'm using Miaderm (a friend recommended it--not my Dr!) It seems to be keeping the redness at bay. I couldn't find it locally so ordered itfrom the company. They shipped it out quickly and I received it in a few days:

    Best of luck with the rest of your radiation!

    https://www.miaderm.com/?v=7516fd43adaa&gclid=Cj0KCQjwqNqkBhDlARIsAFaxvwwUk0AvnkDhpQx1zcpoXrTv-rBJ10UYRJQl8L75qhSS236w2yHI5SoaAgFwEALw_wcB

  • sonya16
    sonya16 Member Posts: 72

    janehicks: I finally finished my radiation a week ago Tuesday. I had both breasts radiated, the left side where most of the cancer was, and had gone to one lymph node, the right side was a very small cancer. I had a mastectomy and immediate reconstruction with an LD flap on the left side, and a lumpectomy on the right. I had five weeks radiation on the left and four weeks on the right concurrently. I had started out using the Aquaphor but found that after a week or so it actually irritated me and it was so thick and goopy. My plastic surgeon had recommended biafine act which I ordered from Amazon. That cream has been a godsend. Although the burn on the left side did increase the week after radiation, it is already turning to tan. I am very fair skinned. But I guess it’s just what works for you. However, I just can’t say enough good things about the Biafine. Especially underneath the breast where it gets very irritated. It is very soothing and cooling. My right nipple became extremely sensitive and irritated so I put cream on that and covered it with a non-adhesive pad so that it doesn’t rub against my clothes and that has worked out wonderfully. As far as the fatigue is concerned, it hit me the most after I finished radiation. I try to take it as easy as I can but I do understand how difficult it is to do that when you’re used to being on the move constantly. I don’t have a lot of patience with myself, and I still find it hard to rest even though I know I need to. But it definitely helps to put your feet up for a little while each day and drink a lot of water. Thank goodness for this site, it has been a huge help to me and getting some answers to some of the concerns that I’ve had from others have been through it.

    I am also dreading starting the AI‘s, but I am really trying to not think too far ahead and just take each day as it comes. I was always one to plan ahead and think forward, but in this case, it leads to too many ‘what if’s’ and I have to stay away from all of those rabbit holes or I’ll make myself crazy.

    Good luck with the rest of your radiation and I’m sending you good healing thoughts.

  • janehicks
    janehicks Member Posts: 50

    sonya16 congrats on finishing radiation! You must be so relieved. Sorry about the fatigue and hope you get your energy back soon! It's can be so hard just to take it easy, especially in the summer months.

    Thanks for the tip about Biafine! I located some Miaderm but will have the Biafine on hand, too just in case.

    So, if you don't mind me asking. are you planning a break before going on AIs? (Looks like you've been through a lot already!) I'm not sure how long it is to okay waiting between rads and Ais but I would love to take a vacation and not deal with any surprise SE.

    Oh, yeah, I'm the same with planning ahead and the what ifs. My head spins out with that stuff. Not great for what we're going through so I'm learning to live with uncertainty and being in the moment. Huge challenge!

    Thanks again!

  • janehicks
    janehicks Member Posts: 50

    greenbean2468 thanks for your response! I just got my hands on some Miaderm! Yaay!

    So glad it's working for you. My doctor never mentioned it either, in fact all he said was "You've got fair skin, you're going to burn bad." Great bedside manner, huh?

    I hope the rest of your radiation goes well and the redness stays away! I'll be sending you good thoughts!

  • sonya16
    sonya16 Member Posts: 72

    janehicks, my RO said the same thing to me when I asked him about the burning in the middle of my treatment. He said it’s going to get worse because of my fair skin. Not what I needed to hear, true or not. Well I did get a little crispy but honestly it was tolerable.

    I was supposed to start on the AIs right after my surgery but I spoke to the oncologist at that time and told her I was hesitant to start as I was still healing from the surgeries and that experience had already been a lot for me to handle, physically and mentally. To explain, I had lumpectomies to both breasts first, then a week later the pathology report came back and the borders on the left breast were not clear. I went back for the mastectomy and reconstruction 2 months later and the day after I got home I developed a large hematoma and had to be rushed back to the hospital for emergency surgery to stop the bleeding. The flap was reversed and I was in the hospital for 5 days. I had to spend time recovering from that. I had been pretty positive about everything up to that point but I admit that this brought me down somewhat. I then went back in the hospital a month later to have the flap put back in place and had to heal for 3 months before starting the radiation. I was actually feeling pretty good at that point.

    The oncologist said it would be ok to wait until after the radiation to start the AIs. I have an appointment with her in 2 weeks. I absolutely feel the way you do in that after all this I don’t want to deal with a whole new set of SEs. As it is I am having problems with pain in the flap area and my shoulder (my office chair scooted out from under me last week as I sat down and I fell on my shoulders/back). I saw my plastic surgeon and she took a quick look and didn’t feel anything happened to the flap but obviously that area was inflamed to begin with from the radiation so who knows? But back to the AIs, I would at least like to be feeling somewhat normal before I start hitting my body with something else. We’ll see what the oncologist says but I’m sure she’ll want me to start then.

  • janehicks
    janehicks Member Posts: 50

    sonya16 wow, I'm so sorry to hear you had to go through so much! What a journey you've had.

    I've gone to two oncologists now. One said to start anytime but I could wait a month after radiation, the other said to start right after radiation but he wasn't that experienced and my feeling was he made decisions based on fear. Pretty sure I"m going to wait at least a month and try to get some relaxing non-appt days in before the next phase of fun.

    I'd like to remember what it's like to feel human for a bit and not like a lab rat. Plus, a break might help to feel more prepared to deal with AI SEs.

    I hope things turn around for you and you start feeling better. This can all be so frustrating!

  • star2017
    star2017 Member Posts: 370
    edited July 2023

    My fatigue hit later, but yes it can be bad. Please be kind and forgiving toward yourself. Drink fluids and rest as much as you need. Wishing you good healthy.

  • janehicks
    janehicks Member Posts: 50

    star2017 thanks! I appreciate the advice and kind words. Only three more days to go and have found fatigue comes and goes depending on the day. Guess it's different for everyone.