Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Starting radiation March 2022

124»

Comments

  • pokemom1959
    pokemom1959 Member Posts: 67
    edited April 2022

    Weird question, but has anyone ever had a colonscopy while doing radiation? I scheduled my colonoscopy months ago not realizing it would overlap with radiation (I have my mapping next Tuesday so I assume I will start soon after that). I don't know if I should postpone the colonoscopy - I suppose the best thing to do is ask my radiation oncologist but just wanted to see if anyone else had done it.

  • dancemom
    dancemom Member Posts: 407
    edited April 2022

    pokemom1959. I was told to hold off on all procedures and vaccines except dental cleaning.

    Wider, I'm in mid-week 6. (34 total) 6 more boost sessions to go. I have been working throughout, but my apartment is nasty. Extra sleep is more important than a sparkling tub. The radiation fatigue is very different feeling from the Ibrance fatigue. Ibrance makes me feel like I'm fighting off a bug by the 3rd week of each 4 week cycle. It does cause VERY low white blood counts for me. Radiation is more like hangover or too hard a workout fatigue. It feels like my body needs recovery time. Power naps are amazing.

  • hippmark
    hippmark Member Posts: 101
    edited April 2022

    Hi. I've been following the March radiation thread for a while now. Thanks to those who posted on their experiences as it helped me prepare.

    I had my first radiation 3 days ago (April 20). I will be having 25 plus 5 boosts. I started 2 weeks after final chemo. Although I still have side effects lingering from chemo, I wanted to just keep going. I will post my experiences here hoping to help anyone else who is in or just now starting this new journey.

    I started on a cream I read about called Rejuvaskin one week before treatment started as that is what they recommended to prepare my skin. It is not the least expensive, but I wanted to do what I could since I will be having so many treatments as well as under arm and up to my clavicle. After treatment, I layer that first, then top with Aquaphor and apply 2x a day for now. We'll see soon how it works!


  • quietgirl
    quietgirl Member Posts: 165
    edited April 2022

    Hippmark I don’t know how much it helps to start moisturizer before treatment but I feel like if nothing else it gets you in the habit of doing it and it certainly can’t hurt.


    I think the last of my minor peeling is done (can’t believe it’s been over 2 weeks since my last session). Now days I am just tired because I’m tired I think not some lasting side effects

  • spades2525
    spades2525 Member Posts: 47
    edited April 2022

    hi everyone! I thought I would jump back on here and read through all of the things that I have missed. But also to give a bit of an update for those travelling this road behind me. I had 20 RAD treatments all with a bolus. My skin was pretty irritated and sore at the end of the treatment, and while they told me my skin would get worse over the next two weeks, I couldn’t believe how much worse it got. I was very blistered and then all the blisters opened specifically under my armpit so I had a very large open wound under my arm for a good 10 days. I basically had to put saline soaks on five times a day and sit without a top on as often as I could. I’m struggling with shoulder range of motion now from the stiffness of holding my arm out from my side for weeks. But! The good news? It’s healed! The fatigue for me was worse the two weeks after I was done treatment I think mostly just dealing with the severe skin issues and just I think being emotionally exhausted from the whole process. Really starting to regroup and feel better now. Thinking of you all and wishing you the absolute best on this journey

  • 1982m
    1982m Member Posts: 224
    edited April 2022

    Thanks for updating spades! I’m done next Monday and I honestly am so so so tired I can’t believe it. It hit Sat evening and hasn’t subsided. I convinced myself I caught a virus but I’m coming to terms it’s the radiation. Skins holding up well so I do appreciate the warning. I won’t keep my head in the sand about skin changes like I did fatigue.

  • dancemom
    dancemom Member Posts: 407
    edited April 2022

    DONE. It has been a long 7 weeks. Didn't feel.like ringing that bell though. I got used to the routine,, and its not like I worked hard on a paper or got a degree or something.. i just lay there and accepted medical treatment. Also, this part being over means I get to go back to the Ibrance dance.

    I'm sorry for those of you who skin problems. I am lucky so far, although I know I have a few weeks of after care to get through.. RO was surprised how well my skin is doing after 34 treatments, as I have such sensitive skin (no stickers for me, they caused blisters by the end of first treatment). Recap on my routine: they provided calendula, but that irritated my skin. Switched to Radiaplex. I use that immediately after treatment and before bed. Midday I put on silvadene and aquaphor. I use the silvadine again at bed. And I use the steroid cream S soon as I feel a tickle. The armpit is pretty raw looking, but as I have no feeling there from the mastectomy, I'm not scratching so its still OK. Funny, the worst part is upper back.


  • 1982m
    1982m Member Posts: 224
    edited April 2022

    Cngrats dancemom!

  • dancemom
    dancemom Member Posts: 407
    edited April 2022

    thanks 1982m I think you are close to finishing too?

  • 1982m
    1982m Member Posts: 224
    edited April 2022

    I am. Currently scheduled for my last one at 08:20am on Monday. Im looking forward to not having to drive there and back everyday and for this fatigue to lift!

  • dancemom
    dancemom Member Posts: 407
    edited May 2022

    woohoo 1982.

    I'm starting to peel now. It's not bad but ugly. Mostly in my armpit. The skin looks slightly charred. The boosted sternum area is now bright red and starting to blister. Using tons of silvadine. SO glad to not be doing that commute anymore!!!! I had time to open the mail finally,lol.

  • 1982m
    1982m Member Posts: 224
    edited May 2022

    Im sorry about the peeling. I hope it heals quickly for you! How’s your energy? I hope your boost doesn’t get much worse. I’m sorry you have to go through this all. It sucks.

    I also chose not to ring the bell. I didn't want the attention. I wanted to scoot out of their and just put it behind me.

    I don’t think my department deals with many younger patients. During my CT planning they scanned me and then came out and asked if I was pregnant, they said they forgot to ask bc they weren't use to working with younger women. They gave me a book about cancer fatigue but it was clearly for older retired adults. The hints were to aim for 60 min of playtime on the weekend with grandkids. What if the grandkids are actually your kids and you need to care for them much more than 60 min? And work? I felt a little frustrated.

    All my appointments were in the morning by request so I could come and then if possible, get on with my day. On my last day the radiation tech told me how nice it would be I could stay in bed and sleep in and not have to come in. I literally burst out laughing. I think there so to people off work and much older. Which is fair. In hindsight I should have taken time off work. I said 'the earlier the better' to booking and they made a comment about how booking would be glad to hear that. I didn't get it until the radiation tech said that. I bet between the rural commuters and people who like to sleep in- mornings aren't the popular choice. Lol.

    Anyways- I'm 2 days post rads and happy to have that behind me. Hoping the fatigue lifts. It was brutal yesterday but today I feel ok. I walked 40 min yesterday and saw my youngest play her first soccer game (she's 4) and was so happy with that. It brought so much joy to my heart to see her play.