Anyone getting ready to start Radiation in Fall 2016?
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I wanted to add for those interested how I used the Mepilex. I put them on right after treatment and left them on until next treatment. But RO wouldn't let me wear them for treatment. I found with removing and replacing, they lasted usually about 3 days before they wouldn't stay on so I'd apply new ones. I could wear them Friday to Monday full-time. I did a sort of patchwork to cover as much area as possible. Probably spent about $200 out of pocket on them using a mix of 6x6 and 4x4 sizes, cutting in half, etc. I could not get them on every part being radiated just due to angles, etc. The areas not covered are notably redder and more irritated. All my Drs said my skin held up exceptionally well. I had 25 treatments. I have super sensitive skin, so I was expecting my skin to do much worse.
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ty Meg, i too have very sensitive skin and even a little rubbing sets off my psoriasis so i will try mepitel and thank you again for sharing
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Congrats reflect...hope the first 4 days of healing is going well! 3 more...the light is certainly getting brighter. Hope everyone has a restful week
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Thanks imkopy, I am doing better each day and have gotten back to work again and am increasing hours too. Much better! Hang in there.
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The Mepitel is better than the Mepilex for staying on and for coverage, and can stay on throughout treatment. I have some Mepilex squares just to patch up any bits the peel off in the next week or so before I take the whole lot off.
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AmusingSoprano - you are totally right, I just looked at the box, it is the Mepitel I primarily used, after trying both I found the same! My bra could hold either in place, but the Mepitel definitely stayed better.
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hi all: just back from meeting with radiologist oncologist. He said to wait till january to begin since i am still waiting for onco type/score. I would have 21 treatments including 6 boosts in the prone position or 33 treatments at lower dose if they have to treat my node area. So we are waiting for test results 🙂In the meantime i will go ahead with the sim and get temp marks and when i start actually treatment i will get tattoos
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Mko, nice that you still get to be on "vacation"! :-) Glad you have the plan in place and can move forward when you get all the information. (BTW, I have psoriasis also and was amazed that everything completely cleared up during chemo but unfortunately is coming back now that I'm off it.)
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Hiya Dara: yes i am kinda relieved that further therapy will start next year and that there is no urgency to start right away 😜 Well well glad to hear that treatment may also improve my psoriasis. Oncologist said that the methotrexate which I am taking is actually a medicine they use to treat cancer albeit much smaller dose. My frame of mind has done a complete 360 where I was afraid and undecided ( and the wait and not knowing) i have resigned to this bump in the road and cannot wait for the next step be it chemo or rads. I owe alot to my frens on this board helping me through the process. Tytyty soooo much to all and to frens like u Dara
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The hospital called me on Monday to tell me that the radiation machine wasn't working and they were waiting for a repairman. They asked if I mind being on call instead of going there and waiting around. They called back at noon and said that it wouldn't be fixed until Tuesday afternoon and made an appointment for 2:30 pm (my usual appointment is 8:15 am). Tuesday they called and rescheduled for 4:15 pm. So I had a treatment late yesterday afternoon and one early this morning. If that wasn't enough to make me nervous about the therapy, today was the third time they changed the markings on my chest. How do they manage to do tattoos on other women if the placement of the markings can change? Were they radiating the wrong place? I'm also getting nervous about not finishing before the end of the year. It sounds like a lot of you don't have to worry about high deductibles/out-of-pocket but it is a serious concern for me.
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Bagsharon,
I'm sorry you had to go through that... I had tattoos, but pushed my treatments back a week so my insurance would cover it.. and they had to remark me because I shrunk.. I had special help and was able to change my insurance from aarp complete to medicare aarp supplement and silverscript for rx.. I don't know what ins you have but maybe look into the supplement
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Bagsharon, I just got back for my rads appointment and am on standby as their machine also broke and the repair man was on his way. I guess it's just one of those things. I felt so badly though for the woman with the appointment right ahead of me. She was to finish tomorrow and now has to come back on Friday. I definitely want to finish before the end of the year also and right now will go till the 28 or 29th of Dec.
My skin is red and rashy and itches, but the woman ahead of me showed me her skin and I will never complain of mine again! Everyone really is different and they never know how much any individual will react. I'm just thankful to be moving along and can't wait to have it all behind me!
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Yikes, Bagsharon. I would see if there is a more reliable location for your rads asap. And/or express your concern about insurance issue to both your rads center and your insurance. Good luck! I never heard of any machines breaking down while I was going, but apparently it does happen.
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Bagsharon - I hope you can get your treatments completed before the end of the year. I've read of someone getting the last 2 treatments in one day to avoid going into the following week.
Dara - Sorry to hear about your skin. When it's over, it should heal quickly.
My hospital has 8 machines. I always went to the same treatment room with the same team of techs. Once the machine next to us was down, and they squeezed in a person before me. Her treatment was very quick.
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Hi Everyone,
I started radiation this week. I finished 24 weekly CMF chemo treatments on Nov 11. So glad thats over! My simulation took two hours. Apparently the first simulation was not doable. They had this mold made of my laying down position and it when it came time to simulate, the beams were targeting my good side. So the second option was for me to lay on a so called board with my head on a small support rest that was uncomfortable. Then they have to tape down my good boob for it to work. Since radiation is taking place on my left side i have to hold my breath for 10 seconds at a time. I have 2 very small dot tattoos. i couldnt tell it was there. My techs are very nice! They are so patient and took time to make sure i was positioned correctly. Today is my third day and guess what, the machine was down so no treatment today. Funny how others had the same thing happen. i will be on a 6 week treatment course.
Happy to hear all your experiences. Congratulations to you who have finished and best wishes to those currently in treatment.
Heres a picture of the machine. Does anyone have a different model.
Libby
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Hi L in Ca: tyty for sharing I start rads in Jan maybe and I've been reading up on treatment since mine will be on left side as well. Most likely on my back since most likely with have nodes treated too. So they are telling me 21 treatments in the prone position or 33 on my back. Thanks again for sharing and posting a pic of the machine
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hello all
I've done 7 out of 15 sessions, I haven't noticed any effects so far. My unit allows any antiperspirant so long as you don't have any irritation from it, so I still use my normal spray. The only moisturiser I use is E 45 twice a day. I was expecting to have problems with my skin as I'm fair skinned and don't tan, but so far so good. I don't know whether it helps that I've mostly gone braless since I started, I wear cotton t-shirts with loose sweaters or cardigans over. I'm hoping no one can tell...!
I also haven't had any issues with tiredness or nausea, sometimes I wonder if this is doing me any good if I have no side effects? But the second half is likely to get a bit tougher I guess, I have a review after ten sessions, there's plenty of time for things to get difficult yet.
Hope everyone has a good weekend with lots of rest and recovery.
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Hi Dizzybee - Happy it's going ok for you so far. Me too. Like you, I've been treating my affected breast tenderly - no bra, only soft fabrics, and moisturizer (Aquaphor with cocoa butter over the scars).
I just completed the 14th of my 20 treatments with no tiredness, skin irritation, or other side effects. At about the 10th treatment my underarm looked tan, my breast was noticeably pinker, and I felt a mild throbbing inside it once in a while. But nothing uncomfortable. It's a bit of a surprise at how easy it has been - I was expecting worse. My wish is that all of you can have the same experieince.
My RO looks at me once a week and says my skin looks as it should at this stage. Next week I start 4 boosts and I am unsure what that will bring.0 -
hi All,
I'm late to the party, but I started rads on November 9th and just finished 2 days ago.
The skin in my armpit area has opened and I'm grateful that I don't have feeling there! That said, rads has still by far been the easiest part of this year of treatments. Hoping all of you still in treatment sail on through!
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I finally took my Mepitel skin film off this morning. The skin is great, just dry which is to be expected. I now have a little tub of Epaderm cream to apply over the whole area twice a day. No redness at all. I was told to keep using non-aluminium deoderant for another week as well as the Dove soap.
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It's interesting that my unit now allows any deodorant. In the beginning they gave me an old version of their information leaflet by mistake, it said deodorant had to be aluminium free. But the new version of the leaflet has been changed to say you can use anything unless you develop irritation.
They also say you can use any moisturiser, if you're going to buy a new one they suggest getting one free of sodium lauryl sulphate, but you can use whatever you have, but apply sparingly twice a day.
It's strange that they say such different things, we'll see how things are when I've done a few more...
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Hi to everyone-jumping in here as I will be starting radiation Tues Dec 13th- 16 plus 5 boost. I have read through alot of advice. The radiation treatment centre recommends lubriderm and salt soaks- so ok check on that. I purchased some aloe and lavender hydrosol today. I was interested in the Mepitel covering but got no traction from the RO and I am not up for trying to apply it myself off label. RO also says I won't need ABC (breath control) as my DCIS was right breast and it won't help.
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Hi brigid_TO, sorry you have joined us, but glad you found this group!
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Hi Brigid_TO, welcome to our group. It's always interesting how different centers recommend different things. Just remember also that we all react differently and there's no predicting who will have an easier or harder time with rads (or chemo.) I'm really fair skinned and always burned rather than tan. I expected to be miserable, but my skin has held up pretty well. I'm getting the lower dose of radiation so have more sessions. I'm at 23 of 28 and then will have 8 boosts. Starting to see the finish line in sight. Hope your side effects are minimal if you have them at all. Good luck.
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Brigid_TO, I finished my rads, I'm fair skinned too and used Aloe all through it.. really slathered it on, but it held up well too, I did start getting more burn with the boosts, but not as bad as I expected.. I am peeling now, but still using Aloe and a skin repair cream... it's helped
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Hi ladies Im 4 days out of my final radiation treatment...I agree compared to chemo this is a breeze but still no joke. As for my skin, it held up fairly well the 2 worst areas were under my arm and below my breast, very red but no blisters. 4 days out those 2 areas are shedding the brown skin and revealing pink skin underneath. Ive added lavender essential oil to my regimen which helps with itching. I still use my coconut oil right after my shower and slather on aquaphor before bed. My skin is really soft and just needs to heal.
My advice for those in treatment use the cream they gave you at least 3xs a day, drink 1 propel a day for fatigue & remember this too shall pass .
Hope everyone has had a restful weekend
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Dara this is for you....I made it when I was at #23...
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I was diagnosed with Stage 2a invasive lobular breast cancer 2.3 cm. I had 4 rounds of chemo and now my doc is suggesting radiation and I cannot for the life of me figure out why? Has anyone else had radiation with only stage 2 and a 2.3cm cancer? I'm so confused.
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yes almost always there is rads after chemo sometimes there is only rads. But it appears that no matter what rads is a form of treatment for bc
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Pinkwash, like Miko said, radiation is pretty much standard treatment for breast cancer. I have Stage II but even when it was a clinical Stage I, they were recommending rads. It was the chemo that turned out to be a surprise but I have IDC, not ILC.
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