Starting Radiation October 2021
Comments
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MacDebbie--I have a seroma the size of the palm of my hand. It had mostly resolved but the radiation has puffed it up again. TBH I can't see how a small seroma would distort results. I am 2/3rds of the way through my treatments and they put a gazillion marks on your chest/breast and take a lot of care planning and setting up. After the planning session they do a simulation session. Once therapy starts, they do x-rays periodically to make sure you are lined up properly. I asked my RO earlier this week if the radiation would make the seroma "hard" or prevent it from resolving and he said no, quite emphatically. I am being treated at a center of excellence and trust my RO implicitly plus he is well known in the field. I suppose it could happen, but if it is very small, that is akin to a cyst and those can usually be removed surgically with excellent cosmetic result in an office setting. I also get a bolus which makes the skin quite hot for hours afterwards. But using aloe and Eucerin, and I am ghostly fair, I am not having any problems despite the seroma and the bolus. You can safely delay therapy--up to 12 weeks seems to be the conventional wisdom. But if that is your only reason for doing so, I am not sure it is worth the anxiety.
Today was the first day that I felt like I needed to veg out for part of the day. I have been super busy throughout this whole process which started last May for me. Two surgeries, scans, a zillion appts, biopsies, and related, all requiring travel to another state, living out of a suit case and trying to manage life, family stuff, and work on the fly. In fact, I have to move again this weekend which is exhausting. Finding furnished rentals has been expensive and a big hassle due to Covid. I see my MO on the day of my last treatment. I am still being treated but it is already time for my 6 months check up! How convenient
. Hoping after that I will not have to have any appts or follow up care for awhile.0 -
Hello all; hope everyone is hanging in there. Ruby, how great to be 2/3 done...yay. MacDebbie--sorry I don't know the answer to your question but if it were me I'd just go with my RO's recommendation. Good luck. Serendipity--I hope you're feeling better. Gentle hugs.
Do y'all know your radiation dosage? My RO was pointing out some of my rads "areas" on the computer today and I asked about the different colors; she said the area in the middle of my chest is getting "55 gray" which is a higher dose than the other areas. Most of the area is getting "50 gray." She said if I have a skin problem it will most likely be on the area where the dose is higher. So then she recommended a Mepitel sheet to cover that area from this point forward and the techs put one on me. Is anyone else using those Mepitel sheets?
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LW422-Mepitel is skin sparing. In my case, they want to ensure adequate treatment of my skin, so won't be using it. I asked my RO about it and he says it is very helpful. I am getting max 40Gy because I am having a three week course of hypofractionated radiation. Sounds like you are having a longer course. Great they are using the Mepitel with you.
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Hi Ruby. Yes, I'm having 6 weeks of treatment--5 weeks of rads (some with bolus) and the final week of "boosts" to the scar. My max dosage is 55Gy.
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Happy Friday to you all! Two day break coming up!
I'm curious as to what my dosage was. I go in next week for a follow up so I'll ask.
I didn't have nor was I offered the Mepitel at any time. Do they put it on you after rads? What exactly is it supposed to do?
Fatigue is better, but skin is still very angry. I woke up with a blister on my breast, fully intact. RO's nurse said that is normal being that I'm only four days out. I have a very bright, lobster red patch on my chest, my entire breast is red but seems to be settling down a bit, my side and underarm are still very red. The underarm is peeling badly, it's a bit disgusting, but I'm glad that it's happening as it just means the new skin is coming in. Under my breast is the most painful though; having difficult time with that area as every move I make the skin feels like it's just ripping apart. I'm doing aquaphor or vaseline patches during the day and the burn cream with calendula at night, that way I can just wear a camisole to bed. I'm struggling with hot flashes at night and the less I wear the cooler I'll be.
Hoping everything goes well for everyone today!
Have a good day!!
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Hi Serendipity. I'm glad your fatigue is better but those stupid skin SEs sound awful, bless you.
There are a few threads on the forum about Mepitel; many people have an easier time of radiation by using it. It's a transparent film that helps prevent radiation dermatitis. Here's info on a clinical trial if you'd care to read... https://clinicaltrials.gov/ct2/show/NCT03910595. From that abstract... "Recently, a phase III randomized trial by Herst et al. (n=78) in New Zealand showed that the prophylactic use of Mepitel Film reduced skin reaction severity by 92% compared to skin treated only with aqueous cream." You can also search the forum for Mepitel to find previous discussions.
Some people put it on their entire radiation area and leave it for the duration of treatment. My RO just recommended it for my chest area where I'll get the highest dose of rads; the tech put it on me yesterday and said she would replace it when it begins to "let go", I assume from showering, etc.
I'm two weeks done and 4 to go!! Woohoo! So far I'm not having any issues other than the same old surgical complaints. I hope everyone in treatment had a good week and will enjoy their weekend off!!
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Serrendipity, sounds like you could use Mepitel. But you can also get hydrocolloid or similar dressings at the pharmacist or online that might help. Call your pharmacist and see what they have or can get (asap) for exuding wound care. I think you can be a lot more comfortable, especially with something to reduce friction (which these things do well) under the breast area.
I am over half way home so to speak. Well, literally in my case. Haven't seen my family in 4 weeks. One more week and hopefully this becomes a thing of the past or at least the very distant future.
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Thanks LW and Ruby for the info on Mepitel, going to see what I can find! I wonder why my RO or his nurse/techs never mentioned it; Even when I spoke to the nurse this morning about the blister and skin under my breast? I just pray that my skin heals to the way it was before this.
Ruby- that's great that you are past the half way mark and you'll see your family soon.
LW - two weeks in...That's awesome! My 5 weeks went really fast, I hope it goes fast for you and everyone else going through this crap-show.
Have a great Friday night lovelies!
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Hello all,
I'm getting 60 Gy's, I've got 18 more to go! I am having a hard time swallowing, hope the two day break helps. I'll let them know on my Monday check with RO. Everyone hang in there and enjoy the weekend break!
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Serendipity--I'm far from the authority on Mepitel, but I believe it is used during treatment and not after...?? A patient in the waiting area this week told me she was using some kind of cooling gel pads that the RO gave her for her burns. I wish I could remember what she called them!
NatureYogi--sorry you're having difficult swallowing; so far I haven't noticed that happening. Hooray for only 18 left to go!
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I have had to initiate conversation with my radiation therapy team on every subject, from skin care to the mepitel film to how much radiation to my heart etc etc. So don't feel bad Serendipity. I ask questions of nurses and techs and get a lot of blank looks. No idea why that is given this is what they all do for a living and it is a great research facility with great practitioners. Not terribly proactive. On the other hand, it does seem like there is a big uptick in people being treated and they are all doubtless tasked with the same issues as everyone else in terms of Covid, etc. meaning everyone is stressed. The day before I was due to start treatments, I again asked if I could talk to someone since I am from out of town and wanted to know what I should have on hand. The woman who came to see me was very hostile. She basically said, "what do you want?!" I was so damned tired and I am sure that was evident. I just said I was away from home, starting therapy, and really wanted to know what I needed to watch out for or buy. I think she felt bad because then she knocked herself out telling me things. But I still did not get so much as a hand out until after I started. I truly do not get it and if it weren't for this forum and the internet I would have had no clue.
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LW - thanks! My RO mentioned those gel pads at the start of rads, but because things weren't the way they are now, they probably didn't think I needed them.
Ruby - I just feel like I'm doing this all wrong (doubt there is a wrong/right way with any f this) I'm following instructions, but it just doesn't feel right. I'm greased up all the time and wondering how is that going to allow for healing? Especially under the breast, not much fresh air gets there except for after daily showers. I woke up with another blister, this time on my scar and I'm just in so much pain due to the skin under my breast. I don't have feeling in my armpit thankfully, otherwise I'd be feeling it there as well. I'm irritable due to lack of sleep because I can't move. My pain tolerance has always been very high, or at least it was until now. I realize under the breast is a very sensitive area, but my goodness this is awful. I had my breasts removed with five drains (one that stayed in for five weeks) and could've walked five miles a couple days later (I didn't). I had fat grafting (lipo) with my exchange a few months ago and was up and going the same evening. I'm at a loss.
Sorry for venting, I figured you all are the ones to do it with. I pray to God none of you experience this. And I'm very sorry if I'm scaring (did I spell that right?) any of you, that's not my intention.
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Serendipity--I'm so sorry you are having such a bad time and I wish I had a magic wand to take it all away (for all of us). Don't ever apologize for sharing your situation. I believe the value in these forums is that patients get the REAL story... good, bad, and indifferent. It is important to know that we very well could get much more severe side effects than "a tan".
Hopefully most won't get severe SEs, but there is no value in hiding the truth so that people can be mentally prepared for what might come. Also, the expression "misery loves company" is actually true... on some level we are relieved to know that we aren't alone in our misery. (Not that we want others to suffer, but we want to know what we are going through is not unique, how long it might last, etc.)
I have to wonder about all the creams and potions, too. I'm a patient at MD Anderson in Houston with a leading RO, and neither she nor any of her team have recommended ANY type of cream to me. On my first "see" visit, I asked her what I should be using and she said, "are you having any discomfort?" I answered that I was not and she said she'd provide a cream if I needed it (and she gave me a tube of a cream). I definitely got the feeling that she didn't recommend any cream unless I was in pain. I found that puzzling because it seems that everyone else having radiation has been faithfully slathering and I am not. (I had been putting a moisturizer on my mastectomy scar since my PS recommended it.)
If you haven't read the thread in this section called "A RAD Onc Weighs in on Radiation "Burns", please do so. https://community.breastcancer.org/forum/70/topics... The message from that RO is that the creams might provide some comfort but don't do anything to help healing, and I tend to believe that is true.
Have you been given any Rx or medicated cream for those blisters and sore places? How about a cream to help with pain? Take care and I am keeping you in my thoughts.
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I actually came across that post yesterday and it has me questioning everything I'm doing. From the get, the only cream given to me was Miaderm and then towards the end, aquaphor. They offered me something for pain on my last day, but I refused thinking it was a pain pill, now I'm wondering if it was a cream. In all honesty it hurts to put the Miaderm and the Aquaphor on it. The Miaderm has lidocaine in it, not sure what else they would give me to numb things up. I'm afraid of adding insult to injury. The above article says what we already know, the radiation burn comes from the inside out, so how can we really prepare for this other than moisturizing and staying hydrated? I know it's going to pass, I just wasn't ready for THIS emotionally, and after rads finished.
I agree with you with whole misery loves company. And like you said, I don't want anyone else to suffer with me ,I just know that you all can relate.
I'm in touch with someone on a regular basis from the August thread and she went through the same thing, she's 3 weeks out from the end of rads and she's helping me get through this. I know that there's light at the end of this very dark tunnel.
Rads went so fast, now I want this to go fast too.
Thanks for "listening"
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Serendipity, LW422 said it perfectly. I'm so sorry you are having a terrible time, wish I could make it go away.
I'll be thinking of you,
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Thank you Nature, so appreciated! I know this is temporary, but I'd love for it to be over now. I keep thinking that since tomorrow is a week from my last session that a switch of sorts is going to turn on and things will be better, lol.
Have a wonderful day!
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Hello all; hope everyone is doing well. I started week 3 today; not much to report though I noticed that "food stuck in my throat" sensation when I ate some lunch after treatment. Hope that doesn't get more annoying.
Serendipity--I hope you're feeling somewhat better. I saw the woman in the waiting area who is having such horrible burns and blisters; she told me the gel sheets that help her are called "Cool Magic," and her RO provides them. I see they are on Amazon but quite pricey... https://www.amazon.com/QCMP00208-CoolMagic-Hydroge...
Take care, everyone.
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LW - I hope the throat thing goes away! Like I said, I had it for a minute, it then turned into a cough which I still have.
I had to go in to see the RO's nurse, I couldn't deal with the pain under my breast. Even though I feel like my skin is split it's actually not, which is good. The blisters are intact. They gave me the Mepitel and offered me pain meds, which I did not take, he does not want me putting anything on the area, including the cooling pads, which they have; only Aquaphor/Vaseline patches. According to the nurse the new skin is coming in, I woke up with white patches everywhere, and says everything looks ok, meaning they don't see anything to be concerned about. She said that from what she sees I should start feeling relief by end of the week. I pray she's right. The Mepitel is actually helping somewhat, I'll take whatever relief I can get.
The new thing that just started about an hour ago is nerve pain, I think. I have not felt my breast since my BMX last September (2020) and all of a sudden I'm getting these zings every 10-15 minutes. OMG! I just want this shit over with it. I told my son today that I don't think I could ever do this again.
I see the MO tomorrow. Not looking forward to that! She's going to want to start me on Xeloda and I think my body needs a break. Don't think I can handle any other SE's right now.
On a positive note, I woke up feeling less fatigued. But of course, I overdid it and now I'm paying the consequences. It's the evening so now I'll just lay around for the rest of the night and I know to do a little less tomorrow; but at least I felt like myself again.
Keeping you all in my thoughts and prayers!
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Hi ladies! Sorry I haven’t checked in for awhile, I’ve been reading and thinking about you all.
Ivy, so sorry that you are having such terrible side effects with your skin. Hopefully they are right and relief is coming soon!
I had session #5 today, so I am 1/4 of the way done. So far (knock on wood) haven’t really noticed any SE. I’m exhausted today, but that may just be because work is super stressful right now and I didn’t sleep well last night.
I had been reading about everyone’s doses, so I asked my RO about mine. I am getting 266 cGy per dose which makes no sense in comparison with the other numbers?!?!
Wishing everyone peaceful healing thoughts
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Hello all, hope everyone is doing ok. I got the mouth/throat solution today, don't notice any difference yet. You take every two hours on the first day, then every 4 hours. Starting to get a tiny bit pink, no pain. It was kind of hard to hard my breath today, due to mask and ragweed blooming! I've got 15 to go!
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Serendipity--how did the appointment go today? I hope you can postpone the Xeloda until you're feeling better.
Aklynna--I've seen so many different "notations" of radiation dosage that I get totally confused. On "MyChart," my dosage is in the thousands... like "5000". Greek to me.
NatureYogi--is that mouth/throat stuff a liquid to swallow? Is it nasty? I hope my throat doesn't get any worse. Right now it's just annoying but doesn't really hurt.
So far my skin still looks normal except for all the tapes, Mepitel, and Sharpie markings. I thought I was getting a pink spot but it turned out to be where the red Sharpie bled a little. Hope it stays that way!! I have 19 to go.
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Aklynna - thank you! Hoping the fatigue is not one of the SE's, make sure to drink lots of water. I also hope that work becomes less stressful. 1/4 of the way is awesome! I felt rads went rather quickly for me, which I'm happy about, now I just need these next couple of weeks (or 7 months to be honest) to go fast
I completely forgot to ask about what my dosage was. Even if they told me I wouldn't know how to interpret it.
Nature - I didn't know there was a solution for the throat, but like I mentioned, mine turned into a cough after a day or so. Wonder if it would've helped with the cough? Hope it helps you soon.
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Sounds like everyone is hanging in there! I hope everyone is OK.This past weekend I had to move out of the apartment I have been staying, at so packing, cleaning and unpacking last weekend. Woke up yesterday with radiation dermatitis. Tried to talk my RO out of the last 2 bolus treatments (I knew I would not prevail) since they really have set off a reaction from day one. Now with the blisters, I am hesitant to apply any of the creams. Not entirely sure what to do and worried they will become infected. Tomorrow is the dreaded bolus...
Serendipity you have really been through the wars on this but sounds like things are trending in the right direction. If there is no danger I would also want some time off before starting another treatment regimen. You need to feel better and be in a good head space and a break might do the trick.
LW422 Sounds like they are using centigrays in describing your dosage which would convert to 50Gy.
If anyone is having a sensation of sore throat or swelling in the throat that is something I would bring up to the RO nurse. Would be proactive treating it. I don't know if this is helpful or even advisable but I have treated sore throat by sucking on an orange flavored baby aspirin. They stopped making aspergum and that always worked for me. It's an anti inflammatory. If you take baby aspirin for heart health anyway, it is the same dose, but allowing it to trickle down your throat does help throat pain. But don't rush out and get a bottle if you are already on blood thinners or it is contraindicated for any reason.
Ciao bellas.
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LW - so glad that you’re not having any issues with your skin. I pray it continues that way! You and I must’ve been writing at the same time as I didn’t see your post, but yes, luckily she postponed for three weeks.
Ruby - don’t be afraid to use any of the creams given to you by the RO. Aquaphor and Miaderm is all I’m using. I do Aquaphor during the day and cover with non-adhesive pads, keeps the skin very moist, and then at night I lightly wash it off with warm water, then put the Miaderm onbecause it has calendula in it. Blisters have not become infected, stayed intact and new skin is coming in everywhere. I actually just noticed that a patch that I had above my breast, towards the middle of the chest, is now very light pink compared to fire engine red yesterday. It was the first patch that turned red during week 2 (I think). I’m so relieved. My underarm has shed most of the old skin and appears to be healing too. Hopefully everywhere else follows suit soon. Problematic area is still under the breast, but again the Mepitel, (mine is actually called something different, but same thing) is helping. Quite a bit of old skin coming off. Once the new skin is in I think I’ll feel much better.
Good luck with tomorrow’s session, put a lot of the cream/aquaphor on as soon as your done. Keep the skin hydrated, drink a lot of water.
Wishing you all a restful night!
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Ruby--I'm so sorry to hear that you have developed RD and blisters. Yes, my RO said my dosage is 50Gy with one area on my chest getting 55Gy (where she put the Mepitel). I don't know a centigray from a hole in the ground but I was surprised to see the "5000" in MyChart. I think I'm done with my bolus treatments, which I had every other day for 2 weeks. I never really noticed any difference when having them... no "heat" at all.
Serendipity--I'm so glad you got a little break in treatment and I hope the three weeks will give you time to recuperate and feel MUCH better.
Hugs to everyone!
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Hi Serendipity--What is the name of the Mepitel substitute product you are using? Is it available OTC? I think I may be reacting to the creams I am using because I have more than blisters going on it seems. I am allergic to lanolin and I just now looked and everything I have on hand has lanolin "alcohols" in it, whatever that is. So I am going to call the RO nurse tomorrow and see if they have any ideas. The itching and rash is extending into area that should not have received any radiation, including up my neck. For the time being I am going to use it though because I think I do need to keep something on that area. Last night I rubbed off one of my stickers in my sleep.
Which leads me to ask if anyone has tips for removing them? They make me itch, too! The one I dislodged was extremely gooey and sticky and I don't relish pulling these off my poor blistered skin. But I don't want to wait for them to fall off. I don't see that happening in the near future and I have blisters forming under some of them. My last treatment is Friday. I can't wait to wash off the sharpie marks, too.
I wonder if anyone has any ideas about post radiation effects on shoulders and range of movement? I really do not want to lose any ROM and I am so tight from this it is not funny. I am starting PT next week and the RO seemed to think that was OK. I am pretty aggressive with stretching and strengthening and was worried about lymphedema from the radiation but he seems to think that I should be OK. My PT is not a lymphedema specialist. I know that people can have breast shrinkage. I wonder, and sort of assume, that the underlying muscle might shrink as well. Hoping that I can prevent that from happening but not sure how reversible radiation fibrosis is.
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Hi Ruby - I'm sorry you are going through this!
The product I'm using is called Mepilex Transfer it can be purchased on Amazon for $14. You don't think the RO's office will provide you with it or the Mepitel? I bought some no-adhesive pads after having been given some from the RO's nurse and when she asked me on Monday if I needed any more, I told her no as I had purchased some, she told me that I shouldn't have to be buying any of it, that they will provide me with everything.
My rash extended to areas not being radiated too, like across to my other breast and up my neck, nothing terrible though, but itchy, I was told that it was normal for it travel. I used coconut oil on those areas and they healed rather quickly and are now back to normal.
Your RO tech can very gently remove the stickers and probably the sharpie marks on your last session.
I'm having a very difficult time with both my shoulders and ROM. I feel like my lower breast ripping when I stretch for something, but I try to bare with it and my shoulder feels like I have slight frozen shoulder. Keep doing your stretching and excersizes at home, I don't see a lymphedema PT either nor have I shown any sigs of lymphedema. Praying it stays that way. I start PT next week.
Use the Aquaphor continuously assuming it doesn't have the lanolin alcohol in it, it will help. I have it on all day covered with the non-adhesive pads (their breathable) to protect my clothing. It has helped with keeping the blisters intact and softening them. It also has kept my skin moist so that when I peel it's not just dry flaky skin.
I hope some of this helps and I hope all of this gets better for you fast!
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Ruby - I just switched to BeeCureR radiation cream (Amazon), it's pricey for the 1 oz, but I'm worth it, plus love it. I put this on liberally at night and a piece of Mepilex in my breast fold and sleep with a cotton t-shirt.
The pads that I use over the Aquaphor are Telfa Non-Adherent Pad Prepack 8x3 (Amazon), again the RO's office gave them to me initially and I should've asked for more before I bought them. They are also good for when the blisters begin to drain and to protect the new skin when it comes in.
Just thought I'd share.
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Hello all. It's almost Friday...yay! My treatment went well today; I had my RO visit as well. Have any of you experienced muscle cramps in your chest (radiated) area?? A couple of times this week when reaching back behind me, I got a painful cramp in the area of my surgical scar. It was quite painful and weird; I could actually feel the muscle "knotting up" under my skin. Kind of like a charlie horse over my ribs.
I mentioned it to my RO today and she said "that's fairly common." Oh goody. She didn't seem inclined to do anything about it unless it gets much worse; I got the standard "drink plenty of water and do your stretches."
Serendipity and Ruby--I hope you both are feeling OK.
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LW - I'm feeling that but on the lower part of my breast beneath the scar, which makes sense because I have implants.. RO's nurse said the muscle tightened up. I'm feeling "electrical shocks" on my scar line, they are awful and happening very frequently for the last few days. I think rads must've woke everything up in there cause, again, I had no feeling in my breasts until now. I'm drinking a lot of water too. I hope it gets better for you.
UGH! I feel like every time someone brings something up I say "I have that," lol.
I'm seeing progress on my skin. A little more of the breast towards my cleavage is looking normal, peeling a little, but no big deal. Rest of the breast and area below armpit, along the breast line, is still very red, not so angry though.The blisters "opened" and new skin is forming, but still very raw on the lower part and the fold of the breast. Underarm seems to be healing nicely.
I'm glad you only have tomorrow to go and then a well deserved break. Hang in there!!
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