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Starting Radiation June 2021 Group

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24

Comments

  • GreenOutdoors
    GreenOutdoors Member Posts: 68
    edited June 2021
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    Hi Star2017, thank you for your reply. My PS didn’t give me the option to place the implants prior to radiation. I’ll see him two months after radiation is done to evaluate the situation. No surgery until at least 4-6 past radiation. I might wait longer. I think that I can live with some tightness, just not with pain.

    AB45, my appointments are early morning and I’m able to work a full day, in office right after. I am tired but nothing like chemo fatigue. I’ve taken only one afternoon off some far (out of 11 days of treatment). It’s not fun, but it’s not horrible so far.

    Julie, I wish you good weather for your hike, it sounds amazing!

    I’ve been using Aquaphor twice a day, right after treatment and before bed, that’s stuff is so greasy I don’t need to reapply through the day. I wear plain cotton t-shirts and cotton tank tops. No skin reaction yet.

    Good luck to everyone, two more treatments and the we get the weekend off!

  • ab45
    ab45 Member Posts: 153
    edited June 2021
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    Thanks Everyone

    They did my mapping and simulation yesterday. It took 2.5 hours...the hardest parts were holding my arms behind my head, breath holds, and laying still for that long..I have severe motion sickness and positional vertigo so laying flat is going to be a challenge..they told me my actual radation treatments for underarm and breast would be 30 minutes..I am reading other posts and this seems to be a long time? Any thoughts?

  • ab45
    ab45 Member Posts: 153
    edited June 2021
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    Thanks Everyone

    They did my mapping and simulation yesterday. It took 2.5 hours...the hardest parts were holding my arms behind my head, breath holds, and laying still for that long..I have severe motion sickness and positional vertigo so laying flat is going to be a challenge..they told me my actual radiation treatments for underarm and breast would be 30 minutes..I am reading other posts and this seems to be a long time? Any thoughts?

  • AC602
    AC602 Member Posts: 5
    edited June 2021
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    Hello all,

    Thank you for starting this thread. My radiation doesn't begin until mid-July but am very appreciative of the information and descriptions of experiences. I am 10 days post surgery and am grateful to get a break from the endless appointments for a bit. I still have to meet with my surgeon one more time and met the RO yesterday to begin to get oriented to the radiation - will be 25-35 days depending on what the scan and mapping reveals. I had a right breast mastectomy and node removal. The pathologist found 12 nodes- 11 with cancer. A bit more than expected, based on previous scans, so I am trying not to get too wedded to what is revealed in two weeks when I go for my mapping. Good luck to all of us who are navigating all the layers of treatment and endless decisions during this time.

  • racheldog
    racheldog Member Posts: 209
    edited June 2021
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    I am in Week 3 of whole breast radiation. Everyone told me that the first two weeks would be easy and they were right. This week the tiredness is setting in. Plus my L breast is getting hotter, pinker and , of course, feels heavier. The nipple is the main part that is taking a beating and I have to keep that very moisturized. Last night was the first night that I had some red spots and itching. Had to finally use Hydrocortisone cream and Tylenol. I have one more week of "boost" radiation and I sure hope it is easier. Chemo was worse but radiation has been no picnic either. Sometimes I still think that I should have rethought mastectomy, maybe even bilateral which would have eliminated the need for radiation at this point in time. Like everyone , I pray to go through this once and have no recurrence. All the appointments are just exhausting. I am single and schlepping myself to everything. When one is tired it sure affects your mood and outlook----does everyone else feel this way?

  • kipepeo
    kipepeo Member Posts: 70
    edited June 2021
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    Racheldog, thanks for this info. I just started week 3 today and am just starting to see spots and redness. The breast is swollen and has some tender areas. I've had no symptoms up to this point, but today I'm noticing I'm a bit tired. I should finish next week, no boost. But I'm aware side effects will continue for a couple weeks.

  • juju-mar
    juju-mar Member Posts: 200
    edited June 2021
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    ladies,

    I have 7 treatments completed and had a girls weekend planned for what was supposed to be the end of treatment and hiked some amazing trails in Salem VA.image I'm actually glad this trip wasn't at the end of treatment, my skin and energy is good. Back to radiation this coming week.

  • racheldog
    racheldog Member Posts: 209
    edited June 2021
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    For Kipepeo: Wanted to see how you are doing with emotions as a few entries ago you felt like I did!

    I am on my last 3 week whole breast tomorrow (15 treatments) and then I am supposed to go for "boost" which I plan to speak with the RO about on Tuesday. Thank goodness for this last weekend off. I made it through 2.5 weeks of fairly good skin and no issues and then last Thursday the itching, red spots/papules/rash and even pain started. I had to resort to mixing in triamcinolone cream with my other calendula creams. Hard to fall asleep until the discomfort settled down.

    I am unsure about this "boost" for 5 more treatments and although that is the plan I read some very recent ASCO reports from 12/2020 and it does not seem like the percentages outweigh or give much benefit overall in statistics for excellent overall control after the whole breast radiation. I am so done with all this already! I dread even the last whole breast treatment tomorrow.


  • star2017
    star2017 Member Posts: 370
    edited June 2021
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    HI everyone,

    My radiation is to metastasis in the bone. I've had 9/15 treatments. Generally doing well, skin is holding up, but my fatigue has been pretty bad this weekend.


    I hope others are doing well.


  • kipepeo
    kipepeo Member Posts: 70
    edited June 2021
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    Juju-mar, love the photo! So beautiful.

    Star2017, I can imaging you'd be tired if your bones are getting radiation. Doesn't that effect your blood cell production? I hope you get to feeling better soon.

    Racheldog, I've learned something about myself... I get depressed and down when I have to do something medical that I've never done and has risks. I was very depressed after I was told I should have chemo. I spent time weighing the risks. Once I got my first infusion I was fine, even though I had some pretty severe uncommon side effects. Same thing happened with radiation. I was down during the mapping and for the first 2 treatments. After that I've been fine emotionally. Actually, several people have commented how I look and sound so good. I feel pretty good right now. Side effects are minimal so far, and I see the light at the end of the tunnel.

    I've had 12 treatments, and I think I have just 4 more. I was to get 15 with a 4 dose boost, but because I've also had a reduction, my RO feels since my tumor bed is jumbled up now, a boost would damage healthy tissue too much, so I'm getting an extra regular dose.

  • docy
    docy Member Posts: 20
    edited June 2021
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    I had 6, 14 more to go

    I’m also on chemo Kadcyla , had one treatment so far, that made me very tired first few days.

    Regarding Radiation, doing well so far and applying the steroid cream my RO prescribed

    The only complaint I have is that I have to hold my arm and shoulderin an uncomfortable position and is painful, because I already have pre existing rotator cuff issues in my shoulder.

    I do not have to hold breath. MyRO says they put me in a tilted position so I should not get any radiation to

    heart. Crossing my fingers.


  • kipepeo
    kipepeo Member Posts: 70
    edited June 2021
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    Do you gals want to see what my linear accelerator looks like?image

    And with me in it with the lasers on .... Before the techs left and closed the door.

    image

  • GreenOutdoors
    GreenOutdoors Member Posts: 68
    edited July 2021
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    image

    Hello Heidi,

    I like the ceiling in your radiation vault better than the one in mine! It otherwise looks so similar. I’m sorry that you are all going through this, but it does help to know that we are not alone, doesn’t it?

    Juju-mar your picture is so pretty and relaxing and it makes me happy! Thanks for sharing!

    AC602, I am also getting radiation after mastectomy. If you had chemo prior to your surgery I can assure you that radiation isn’t as bad. It makes me tired, and I can’t wait to not have to drive there daily, but it’s been manageable so far. It’s also going by much faster that I thought it would.

    For people getting radiation soon and looking for information (very boring to those already in treatment!, and referring to my picture above: The blue “pillow” was shaped at the simulation appointment and it is pulled out daily so that I’m in the correct position. The whole thing gets covered with a sheet and then Ilay on the table with my arm above my head for the side getting treated and a pillow under my legs for comfort. I have a tech on each side of me and they line up my body using laser lights and according to 3 numbers listed on the computer screen. I wear a gown and the treated side is uncovered during the treatment. All I have to do is nothing at all. I am then locked into the vault (it has very thick doors) and the machine rotates to get the correct angles. It beeps and makes a bunch of noises and lasts only a few minutes, usually a song and a half! I get radiation to the nodes under my arm, above my clavicle and to the chest wall as well as to the breast skin (for that they come back into the vault and add a bolus to bring the radiation closer to the skin- I think this has to do with the fact that I had a mastectomy). I’m back in my car 20-25 minutes after getting out of it.

    Does it sound the same as what you guys are doing? Am I forgetting something that would be helpful to someone who hasn’t started yet?

    I’m so glad that it’s almost the weekend! I have completed 17 treatments, I’m a little tired, my skin is pink and I get twitches of pain under my arm, my shoulder seems stiffer than it was. I am still able to work full time I just don’t do much after work.
    I hope you are all doing as well as can be expected!
    hugs and positive thoughts!

  • Celebris466
    Celebris466 Member Posts: 9
    edited July 2021
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    Hi, Just curious how treatment went with the Bolus. I know it brings an extra dose, just curious how your treatment went with it. Thanks

  • kipepeo
    kipepeo Member Posts: 70
    edited July 2021
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    GreenOutdoors, that is a very good description of the process. Mine was pretty much like you described.

    The ceiling light covers were very large and bright and the image was like you were looking up through the trees on a bright sunny day with a few clouds. It looked real. Very nice. Although I would keep my eyes closed during treatment because I just thought that my thin eyelids might stop any rogue rays from hitting my eyes. I realize light energy travels in straight lines, but you never know.

    I would like to add some info I learned because I asked a lot of questions. I asked why I wasn't feeling tired yet like other patients and my therapist said it takes about 4000 centigray cumulative before you start feeling it. That day I was in the 3000s somewhere. My total dose was in the 4000s, so I don't expect it to be much worse for me.

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    My radiation machine also looks much like GreenOutdoors'. The image on the ceiling above me is palm trees and blue skies.

    I have one more treatment to my pelvic bone area (metastasis). Pain is pretty much gone, which is truly amazing.

    When I did the breast radiation three years ago I was religious about applying aloe immediately after treatment and then aquaphor regularly. Tho the skin darkened, it recovered nicely. I haven't been as careful this time around, but my skin is starting to get more irritated and turn red/dark, so I've been applying the aloe and aquaphor more frequently, as well as eucerin. Hopefully with the break this weekend and then just one final treatment, the skin will be able to heal soon.

    Hope you all are doing well.

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    Celebris, it three years ago for me, but I don't remember treatment with the bolus feeling all that different.

  • kipepeo
    kipepeo Member Posts: 70
    edited July 2021
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    Star2017, your 2021 diagnosis, is that the bone tumor? You didn't have it again in the right breast area, did you? (Trying to decipher your signature)

    I am so sorry you are going through all this again. What is your prognosis? I pray for healing for you.

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    Yes, kipepeo, the 2021 diagnosis is in the pelvic bone. No recurrence in the breast.

  • GreenOutdoors
    GreenOutdoors Member Posts: 68
    edited July 2021
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    Hi Celebris466, I am honestly not noticing anything different from the bolus. My skin so far is not more pink or more itchy in the area that gets covered with it. I still have 7 treatments to go, so that could certainly change.

    Heidi, thank you for explaining that! I need to ask on Monday for more details on my treatment.

    Star2017, it’s great that the radiation made your pain disappear! And palm trees and blue skies sound prettier than my ceilings! I’m hoping Aquaphor will keep my skin from breaking, I really should have gotten aloe for during the day to prevent my nicer t-shirts from getting stained byaquaphor. Too late now!


  • racheldog
    racheldog Member Posts: 209
    edited July 2021
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    I have had 16 whole breast radiation and so far 3 Boost treatments. I have 1 more Boost to go. While week 3 was when more breast skin changes, rash, etc started , the last week has now been the hardest for me. Radiation tiredness has started and the while to Boosts are about the same amount of time and only directed at where the small tumor was it has taken more out of me. My upper breast rash is clearing but have developed some peeling and small open sore in the lower under crease of the breast. I notice more overall soreness in the breast as well. Trying hard now to dry the under breast small sore quickly so it does not spread. Using soaks and trying to "air dry." That has been my experience. The last Boost sessions and new fatigue and skin issues have been trying. Hope this all resolves soon. This has made me question my decision of lumpectomy/radiation instead of mastectomy.

  • isee
    isee Member Posts: 77
    edited July 2021
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    Just found this thread...I just finished 16 of 16 radiation treatments on Friday. So glad that is over and done with. A bit burnt, but not to bad. I used Glaxal Base cream, it works great. I was told deodorant is fine as is shaving underarm...10 years ago it was not recommended but apparently they have found it makes no difference. Regarding the cream they said that no specific one was recommended, but water had to be the first ingredient. I am feeling a bit fatigued...hopefully it will not last long.

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    Hi everyone. I had treatment 15/15 today of my pelvic bone and sacrum. Overall, I think I held up well. Pain is pretty much gone. I've had some mild-moderate fatigue. My skin is irritated in places. The doctor prescribed me the special ointment, but I haven't picked it up yet. Now I'm concerned there is a sort of yeast infection on part of the skin, so I'll need to ask them about that tomorrow.

  • kipepeo
    kipepeo Member Posts: 70
    edited July 2021
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    Yay Star, congratulations!

    I am now 5 days post radiation. Yesterday I noticed 2 blisters forming. Today they have run together. The little sores I had are healing, but I am more red now, and the nipple area is tender. So things definitely get worse before they get better.

    Doc prescribed the silver cream which I'll pick up tomorrow. For now I'm going braless.

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    Oh dear, Kipepeo, I hope your skin starts healing soon. How frustrating.

  • ab45
    ab45 Member Posts: 153
    edited July 2021
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    Hello Everyone

    Any tips on the body position? It is tough having positional vertigo but the position hurts baddd..

    Thanks 😊

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    AB45, do you mean during radiation? I've been lying on my back. 3 years ago, when it was the breast area being treated, the arm position was trickiest. What is the position you're in?

  • GreenOutdoors
    GreenOutdoors Member Posts: 68
    edited July 2021
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    Hello!

    I have completed 23/25 treatments so I’m almost done. I am getting 2 units per treatment for a total of 50. The RO debated giving me 30 treatments but because I am looking at reconstruction and because studies don’t prove a better outcome with 30 vs 25 treatments after mastectomy, he kept it at 25. If I had a lumpectomy, because my nodes were involved, my treatment would have been longer. My skin is still holding up.

    Heidi, I’m sorry that your skin is getting worse after being done, but thank you for sharing. I will certainly try to keep my gentle skin care regimen for a couple weeks after treatment is over. Did the prescription help? How fast did it work if it helped?

    AB45, if you are laying on your back and having vertigo, maybe ask your techs to very slowly help you down and up? Vertigo is awful, can you take motion sickness medication so that you can function and go to radiation without feeling sick? The few times I’ve had vertigo, staying still actually helped so maybe I’m not understanding the problem you are having. I hope you find a solution.

    Racheldog, I’m sorry you’re having a tough time with radiation. I did get a double mastectomy, yet I’m still here needing radiation treatment. It seems this illness really pushes us to our limits. I hate it! I hope you’re having a nice weekend with lots of rest and that your skin is feeling better. I’m terrified of getting open sores!

    Star2017, Yay to being done with radiation! I bet you won’t miss the daily drives to treatment!

    Isee, congratulations on completing treatment! It seems different RO have different recommendations! I was told absolutely no shaving and no deodorant, go figure?! It’s interesting that there is no standard of care. Has your fatigue improved yet?

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    So glad to hear your skin is holding up and you're almost done, GreenOutdoors!


    My orthopedic oncologist appointment showed great progress in healing of the bone, so it looks like the radiation has been effective so far. My skin is a bit irritated, but at least now it can just focus on healing.

  • racheldog
    racheldog Member Posts: 209
    edited July 2021
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    Well I am done with Radiation and I did try to squirm out of the last one. The last four "boost" doses were the worst. I am one who spent time in the sun and never had skin issues either. I read several articles on "to boost or not to boost" even in ASCO recent articles. The percentage of benefit was not that high? But I did the last 4 as boost and paid the consequence under my breast with what was first a small dime size open peel and then exploded into a larger area. I have large breasts and having this happen in the crease is a challenge now to get healed. Radiation oncologists do not know anything about wound care and they all have different ideas on how to heal this. So I went to my surgeon and two former surgeon friends. They all feel it will heal, maybe 4 weeks. Plus I am going to a local wound clinic as they have the most recent updates on bandage coverings, etc. Any wound in a crease needs air dry but kinda hard to keep your boob up in the air 24/7. Nothing has been easy in this journey so far. I have 4 more Herceptin infusions so far and this is now going to delay that until this heals! Pretty disgusted. Does this make me regret not having a mastectomy instead of lumpectomy and radiation?