Fall Rads 2014
Comments
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I don't remember if they said anything, but I remember reading somewhere that radiating the armpit could increase the possibility of lymphedema.
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MommyQ: Just goes to prove that 'one size doesn't fit all' for radiation. I don't know if my version is called anything, but I get two sustained blasts from what I think are two opposing directions. Today marks my 20th of 33 (I think jhodro and I started on the same day) and I'm seeing bright red under my arm and left-bottom of what's left of my right breast. No pain, but looking pretty raw. To be expected: I freckle. My rad tech loaded me up with aquafor samples and told me to start slathering. He also told me that despite the handout I was given permitting Tom's deoderant, he says best is straight cornstarch.
MommyQ, do the blasts from the ten different directions go at the same time or sequentially?
I'm also curious about what Genny has been told: 45 minutes and the interesting breathing thing. I'm interested in hearing more about this. Peggy, sounds like you're familiar with this?
I'm thinking that MommyQ has a good idea with the 25 hours work a week. It probably works out to that for me in the end. I paid attention to the way the fatigue comes on: around four hours after rads I can feel it rising around me like fog, and my brain turns into oatmeal. At least now I have an excuse---for all kinds of things .
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hi Clarrn, I am also an ICU nurse. Finished aggressive chemo and 1 week of Rads so far. I called my MO today to tell her that I am not going back into care until I am finished radiation. The RO would not give me a VOT and said people usually do fine with radiation. Well hello I am still so de-conditioned from chemo. I have been working 4 hour shifts 2-3 days per week modified. Good luck to you.
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Mortmain, the radiology therapists tested me on the breathing. I had no trouble doing it but apparently it didn't matter much. They are trying to separate the chest wall from the heart and lungs - more distance between them. I gather if it does make a difference, it about doubles the amount of time needed for each session, probably quite worth the time and effort, too.
I'm getting IMRT radiation and I checked with my RO today and he said that he was avoiding my heart and lungs. Good. At any rate, after 12 tx things still looking really good. If I get any redness, it is gone by morning. And I'm hard pressed to see much of it.
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NurseLaura, wouldn't your MO help you out here and talk to the RO?
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Nurselaura- thanks for the info! I can't imagine working right now! My brain can't remember normal things, never mind trying to run codes! ! I hope you don't have to go back. That is terrible!
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Hello everyone,
Just had my second of 25 treatments today..... My breast burn from the inside out and the tech says no one has a reaction so soon, but I don't think he reads our posts . Tonight as I read all the radiation posts I notice that my lymph node area is very sore. Does anyone else out there have this problem this early and what can I do to prevent the area from getting worse? Good luck to you all
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Hi ladies!
What are you all using on your skin to help with burning/discomfort? I was asked today if I want to participate in a study. It's a lotion that is supposed to help prevent dermatitis. But I'm afraid if I get put in the placebo group, that I will end up really uncomfortable. So I wouldn't be allowed to use anything else on my breast including aloe.
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MommyQ- I'm going to ask,not that it will change anything.
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Yes - Mortmain, I think we are on the same schedule. Are you also doing a total of 33 (today I've completed 21 of 25 full breast)? My last 8 are boosts, so I got the last tattoo and sim for that yesterday. I have a pretty red thing going on especially in the armpit and the scar from the lymph node removal and my lumpectomy scar are pretty tender. I am using hydrogel once a day during my busier time of the day and Aquaphor. I noticed this week too that the skin looks 'pixelated' and the RO said that anything on your skin (like old stretch marks I have from nursing) will be more visible but he said it all goes away a month or two after rads are finished.
As far as working - I had an interview Tuesday. It was very difficult, because my brain still cannot recall things like it used to. So trying to describe things in detail - it was very frustrating. I think it went ok, but I still feel like I have lost a lot. I hope it all comes back. Not sure how it will, but I'm hopeful. I'm 8 weeks PFC - you'd think that the brain stuff would be better. Maybe it just takes practice. I finished my Master's in June and was trying to recall what my last classes covered (during chemo) and I seriously had no idea.
Hope you're all feeling pretty good.
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Good morning ladies, got the phone call on Tuesday that they got the insurance to waive the OON deductable till Oct 28. I won't be done with tx by then but they're telling me not to worry about it so I'm trying not to. I went downtown yesterday to have the sims redone. Had to drive during rush hour which I' not used to, took me about an hour. I learned the ABC breathing techniques, it's not hard, they put nose plugs on me, a thing in my mouth kinda like what you use to snorkel, then you have to hold a button down and take a deep breath and hold for 20 seconds. If I let go of the button it means I'm having problems. I will either be getting it that way or the VMAT (Volumetric Modulated Arc Therapy) I don't know a lot about it yet, but I guess it delivers a lower dose of radiation in an arc formation for a more targeted approach. With the drive downtown and 45 minutes for tx's it's going to take me about 3 hours/day. I'm feeling a bit overwhelmed since I'm going back to work on October 1st so I'm trying really hard to just look at one day at a time. I'll be starting rads on the 28th. Oh and I started on Arimidex last night too.
jhondro, good luck with the job, hope you get it. I forget things too, I think for me it's more a matter of inability to focus because I've always got this cancer and tx's and appt and insurance, etc, on my brain.
Guess we'll all get thru this eventually and those of you nearing the end, congrats... hope you all have a good day.
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Golilly2....Insist on talking to the doctor not the tech. I got a prescription cream after 14 days. You may need it sooner. If they don't cooperate show up for your time but insist on seeing doc. first. Should not be red on second treatment.
Edit for spelling
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GoLilly2: I did not have redness for a while, but I did have extreme sensitivity which they said might go away. It didn't really go away but it didn't get worse either. Now at 21, it's pretty red. The cool hydro gel helps me the most. You just can't use it all day. Good luck!!
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Thanks sailing wind and jhodro for your insight.....
Today is the day the RO comes in. I will ask him why I am reacting so soon. I woke up with nausea today and then came home from work because I felt sick all over. I hope it is just a bug and not anything else because I know nausea is not a side effect of radiation. The techs are the only ones who deal with me on the other days of the week. Off to be radiated ...hope today is a good day for everyone...
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Last chemo today, one step closer to my rads!
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Puffin, that is FANTASTIC!!!!!! Ready to feel like a new woman? Grow some hair? Feel better? How long will you likely have between chemo and rads? You've been through an awful lot in such a short period of time. HUGS!!!!
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Not sure if I already signed here or not - but hi, I finished DD ACT chemo on August 26th and started radiation on Tuesday. I think I hate it more than chemo! Fear that they are going to screw up and zap me in the wrong place...irrational, but I am sure not unusual. I will be done October 30th barring anything unusual, fortunately my center is about 5 minutes from my office so the everyday thing won't be a huge inconvenience. Off to read your posts!
Bow
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Bow1965, Interesting how different the reactions each of us have to rads. I've never been apprehensive (maybe I'm just far too blonde to "get it" ). I've done 13, 20 more to go. It doesn't matter if your reaction might be considered irrational or not, it's YOUR legitimate reaction. We all fear different things. You obviously got through chemo which I think is amazing! HUGS
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jhodro, yes, I too have that red thing going on, and today the whole area is red, worst under the arm but distinctly all over the breast. Have same soreness as you, lymph note removal site and lumpectomy site, which was done along side of the nipple. The redness was not evident to me until this last week. The aquaphor moistens, but what is the gel you mention? I'm beginning to be itchy as well. Could the gel help with this?
Genny, Peggy, may I ask the reason for this breathing thing (you called it ABC)? Is this for your particular situation? Should all breast cancer people be doing this to avoid the heart and lungs? Peggy, I don't see IMRT on the abbreviation chart. I can guess what it stands for, but what do the letters really mean?
golilly, lilyrose, I didn't notice redness until after @ 15 tx, and never had any burning. Your reactions sound like they should be specially examined? Or at least addressed/treated.
Funny, at the beginning of the week, I looked ahead at the stretch of treatments ahead and they seemed exhausting and endless. Approaching Friday, and it feels like I'm marching along. They'll be over soon.
I have a pretty sedentary job, and when fatigue hits me, I know I'm going down. But today I had to go into the city for a meeting, and because it was a nice day I walked around 45 blocks or more (its very flat). The exercise pushed off the fatigue, and I felt sharper than I have at this time of day for a while. Maybe I'm on to something? I realize one instance is not a trend.
Anyone here finish their rads yet? When does the brainfog/fatigue let up?
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Anyone else experiencing headaches? Since starting radiation, I have one or two a day. Nothing terrible, and acetominophen helps, but before the treatments I almost never got them.
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Mortmain, IMRT means Intensity Modulated Radiation Therapy, and according to my RO, is the latest and greatest. He says that my heart and lungs will be fine with it and I am getting it on my left side. And I believe him. He seems to be a straight-shooter and I like and trust him.
That special breathing helps some people. I would guess that there are several things that go into it determining whether it would work for you. First, you have to be able to hold your breath for 20 seconds a lot of times. Second, I think it has to raise the chest off the heart and lungs a specific amount. Third, that amount has be significantly more than not doing the breathing. With me, I had no trouble holding my breath but they decided it wasn't needed for me.
I am at 13 tx and I wouldn't know if I had radiation fatigue or not with all that is going on with my DH. It's extremely stressful and I started rads being exhausted from his care. I know that I am not going back to the hospital after dinner to be with DH. Just no energy to do so. I'm there at 6:45AM and stay until 5:30, with a 30 minute break to run over to rads and an hour or so for lunch (gotta feed the fur friends).
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Mortmain, how is your head positioned during rads? Mine is with my chin very high and I get a bit dizzy and had a headache until I asked for a towel to place under my neck and that took care of the headache (don't get them otherwise that I would attribute to the radiation). Still get a tad dizzy, which sitting upright for 10 seconds eliminates.
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mortmain, I went in and had my sims several weeks ago. My Ro called me last week to say that I am one of 1% of the population that has to have either the ABC or VMAT because no matter what angle she tried, she could not avoid irradiating my lung. The cancer center where I receive my rads has only one center that offers this and unfortunately it's downtown which is about an hour away. It also takes longer, about 45/min per tx. Getting tired, time for bed, night all!
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Jenny5775, are you glad that they have techniques that will avoid your lung? Too bad it's so far away, that will be challenging. But we do it because we want to kill the damn cancer! HUGS!!
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Peggy, it doesn't sound like you have where to turn for relief from everything. I can't imagine how you are coping, and wish I could wave a wand for you.
Thanks for the information on the breathing and type of radiation. This is a new world, and it is so interesting when I forget it's happening to me, to all of us.
Genny, I think I understand from your explanation that it is the location of the ex-tumor that determines the angles for the radiation and your particular issue with the heart and lungs. You write you are already taking Armidex, and you are shortly starting your radiation. I gather from others that this is somewhat unusual. Such a very lot all at the same time and returning to work too? May the force be with you, with us all on our rocky roads.
Peggy, the headaches occur randomly, don't seem to be the result of the treatment setup. They're not serious, just annoying. Just wondered if they're related to treatment.
Good night, all.
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Mortmain, I don't have any help. Our sons live on the West Coast. DH has a brother here but he isn't able to help staying with DH. DH has had a rough time with drug reactions this time in the hospital and they are always scary. He is looking at 4-6 weeks in a rehab facility. That will be good for him and for me so I can rest up before going back to 24/7 caregiving and DH's is very strenuous (why don't have 6 pack abs and lovely upper arms then?). I think I will check out having someone come in once or twice a week (depending on expense) to give me a chance to get out and just have a break. Have to see what shape he's in. Hard to believe both of us have cancer. At least his is out and over and done with, nothing else to do.
Maybe your headaches are stress related? I know that's hard to imagine !
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NurseLaura I am with you. I am an RT and my PCP told me yesterday he does not want me to work until after I am done with Radiation. I did not have to have chemo but I have vitiligo and Diabetes, Asthma and Chronic Bronchitis and he does not want me around any patients while I am having any treatments. I am lucky too that I have a supportive husband who tells me to do what I need to do and not worry about it. I am still going to talk to my RO and BS Onc about it when I see them but I guess ideally its my body and its my decision.
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Hi All,Just posting this for a future reader if anyone can find it helpful - now or later. I am nearly at the end of rads - next Wed is my final treatment. Yay! I cannot believe how quickly these nearly 7 weeks have flown by. I started rads 2 weeks to the day from my final chemo (5 months of that). Yes, I've experienced a little fatigue, but nothing a quick nap once in awhile can't fix. I still exercise strenuously every single day and have done so since this treatment journey started in February. I've always been a gym rat and it has served me very well through treatment.
I had been going to an acupuncturist once a week during Taxol, and after finding an NIH study which showed that it could also be effective in helping with radiation fatigue, I've continued to go once a week. Maybe it's just psychological, but I feel it has helped.
I see my RO after every Monday's appointment. This past Monday, I asked the nurse how long I could expect some fatigue post rads. She said 4-6 weeks, which really surprised me. THEN I asked the RO the same question, and got a totally different response. He said that was not accurate, that the TGF Beta (which causes the fatigue) in rads only stays in your system for 10-12 days, so any fatigue should be gone in two weeks post rads. I liked that answer a whole lot better and that's the one I'm going with:-). I also asked if the boosts (last 8 treatments) lessen fatigue since you are getting less of the radiation. Answer - No.
Several weeks into rads my rash got worse and coincidentally I had a dermatologist check up later that day. She prescribed a compound mixture of Aquaphor (480 gm with about 1/8 of it removed), mixed with two tubes of a steroid ointment - fluocinide .05%. As my derm predicted, insurance had a problem w/this being mixed at the pharm, but she told me exactly how to do it and it worked like a charm. I used it with the permission of my RO. Previously, I had been using Calendula cream & ointment only. Now that I'm in boosts and the rash has cleared up, I'm back to using the Calendula cream only - twice a day. My skin is a little pinkish but in pretty good shape.
Wishing any newbies and all in treatment the very best!
Paula
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Thanks so much for starting this thead. Today I'm 2 weeks post-lumpectomy, left side. I met my RO last Tuesday and yesterday I came back for a pre-rad mammogram and CT scan for mapping purposes. They used permanent marker with clear round stickers over the marks to keep them from fading.
I was totally unprepared for how the mammogram would hurt me with my post-up tenderness! YOWWWW!!!! They took SEVEN images, each time compressing me as much as I could tolerate.
Soon after that, I was swollen 50% over my normal size so sore! I called the surgical nurse this morning, and she said to just take Alleve ,wear a good supportive bra 24/7 through the weekend, and apply ice. I'm still just as swollen, maybe a tiny bit less sore...have to sleep with a pillow under it. Has anyone else had this happen with pre-rad mammograms?? I wish they would have at least told me to take some Ibuprophen or Alleve in advance (???)
I will start rads in early October as I have to be one month post-op before they'll do it. Best wishes to all the fall rads here!
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MusicLady, I can't believe you had a mammo TWO weeks post-lumpy! My BS doesn't want me to have one until 6 months post-RADS!! I wouldn't have been a bit interested at two weeks (nor at 8 for that matter). Yowzer!
I got 3 tattoos - one on each side of my chest and one in the middle. Worked for me and you can barely see them. I gather some places put the tatts around your breast.
Good luck with them. I think you'll find them easy to go through. Better than surgery
HUGS!!! (gentle ones at that!)
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