Summer/Fall 2024 Radiation Support thread
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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.
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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.
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I found it was useful to ask the technicians to count down my breath holding. It got easier.
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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.
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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!!!
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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.
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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.
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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".0 -
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!
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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!!!
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@grammie2 What helped me a lot was doing saline soaks 3 times a day. Make your own solution (it's just water and salt: Boil 4 cups of water and add 1 teaspoon of salt). Make a fresh batch each day. Use it at room temperature. Wash your hands and use a fresh cloth to soak the water. Then place the cloth on the area of your skin for 10 minutes. Let it air dry and put barrier cream on top. It helped with the itching and made any redness go away.
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I started moisturizing with cream and aquafor 2 weeks before radiation treatment started. I maintained it during treatment and 2-3 weeks afterwards. Overall I had minimal side effects. The worst was fatigue and brain fog. So thankful for that and the tips I got in this forum!
2 weeks after I finished radiation I started tamoxifen. So far, minimal side effects. I walk almost daily and do strength training 3x a week. I also try to stay hydrated and do daily intermittent fasting. I also started taking Nad+ daily which has helped me a lot with feeling energized, I don't feel as sore after I work out and feel just mentally more alert. Before Tamoxifen I was getting hot flashes since the beginning of chemo. They have gotten a bit more frequent and slightly more intense but overall not bad. It's more like a flush and I'm not sweating a lot through them. I'll wake up once in the night to kick off my sheets during a hot flash but overall I get enough rest. I'm hoping I can lose the weight I gained in the past 12 months which may help with the hot flashes or maybe they will just go away on their own. I was stressed about the possible side effects and thankful that so far my body is adjusting to it very well. Now I'm focused on 5 years of Taxmoxifen and finishing up Herceptin infusions in the next 2 months.0 -
@purpletiger thanks for the info! I am doing much better with the itching now and my skin was only a little flaky, mainly around the node and lumpectomy scars.
And want to hear something funny? I had hot flashes before chemo (age induced LOL). They have totally stopped! By my 2nd infusion I had none. It's crazy how it effects folks differently.
I am only on Phesgo (Herceptin and Perjeta) now through April.
Best of luck to you!!!
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I finished 19 rounds of radiation in the prone position on Monday. I was so worried about having to do radiation on my stomach, but it was really easy for me. The hardest part was trying to figure out the best way to get on and off the table, which I did after a couple days.
I started out using Biafine cream that was recommended by my doctor. After a week or so my nipple was very itchy and sensitive and he recommended that I put Aquaphor on the nipple and surrounding area twice a day. That helped a lot, and I still do that 2-3 times a day. Maybe 2 weeks in, the skin under my breast got very red, so the doctor added Silvadene to my regimen. A couple days before my last treatment I developed an itchy rash on my chest, and the doctor gave me hydrocortisone cream for that. So far all of the creams are doing what they are supposed to do, although I am very dark red under my breast. My armpit also turned red after my last treatment, even though they weren’t radiating that area, and I’d been religiously putting the cream there anyway. I am very fair-skinned, and the doctor warned me that things would get worse before they got better after I was finished with treatments. I go see him next week for a skin check, and I hope it’s getting better by then. Having said this, I’m not really experiencing pain, but more like discomfort you’d have with a sunburn. Thankfully hydrocortisone cream has taken care of the itchy rash.
Onward to the next part of my journey which will be starting the aromatase inhibitor in February.2 -
starting radiation after lumpectomy. My employer won’t let me work during treatment and forcing me to take medical leave and also I have to use my vacation time before taking ML. Any one had difficult employer during radiation treatment
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I’m in California and I worked through my radiation treatment. Pretty sure if your doctor doesn’t give you a note, your employer can’t make you stay home.
I worked through my 2 chemo sessions (it was rough I had AC) then I had summer break while got rest of the chemotherapy. So got a bit lucky there.
Took 5 weeks of sick time after mastectomy with immediate reconstruction, then went back to work.
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