Anyone getting ready to start Radiation in Fall 2016?
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B"H
Frill - Thanks so much - you are absolutly right - iot is sooo hard to drink water when you are nauseaous ..... but i do want to lose some weight so i have to change my attitude!!!!! tnx!!!
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Dizzybee, I also had a -excision before rads. I asked about timing and they said as long as I was healing well, I could start 2-3 weeks later. That seemed too soon to me. My surgery was Aug. 10, sim Aug. 26, rads Sept 6th. They said rads should start not later than 4-6 weeks post surgery.
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Michelle, can you take a low dose of benedryl to help you sleep? I don't react well to it, so I took Ativan, but only when I knew I wasn't going to get a good nights sleep. (Apparently it messes with your sleep patterns). There is no reason to go through insomnia, ask your doc or nurse what you can take for it.
Seraphima, on the broken areas, try using that double antibiotic with the praxomine pain reliever in it. It doesn't burn when you put it on, and it helps the healing. Worked for me. I've never heard of a sim causing a burn, but never say never. My dermatologist (big university doc) had never seen a case of radiation induced subacute cutaneous lupus either, until me. 😄 I can laugh now, wasn't laughing then. Hang in there.
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Hi, it seemed most ladies on this post have lumpectomy. I just had UMX 10/5, had to have a RE-excision 10/24, but will start rads in November. I had chemo AC Taxol from 04-09/01 and the pathology from surgery said three negative lymph nodes. My OC said she didn't think I need rads due to MX and I had one positive lymph node at biopsied. I had bc on left breast and afraid of the SE to heart and lungs. I'm thinking about consult with RO from MD Anderson about Proton therapy. Has anyone heard about this? How effective is it? Thanks.
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thanks, LoveMyVizsla, I will look into that. The weird thing is that I still have generalized itching too, but I can barely stand to touch the skin. My RO offered me a prescription for itching. I may ask him for it tomorrow just in case I need it this week.
Something I stumbled on that has helped quite a bit - I bought a piece of light fleece fabric, washed it, and have just cut it into strips and squares. The strips rolled up were good at first tucked under my breast to keep it all cushioned and dry, and now that the inflamed area and skin loss is larger, I roll up the squares and tuck them in there. It's harder to keep them in place with much of my breast gone, and I can't even begin to wear a bra. But somehow the fabric feels dryish to the touch no matter what ointment I use or if I'm sweating (my car AC is going out), and it keeps the area drier too. Those have been SO much help.
As far as insomnia - lol my sleep patterns are ruined. Last weekend I couldn't stay awake - was sometimes sleeping 16-20 hours in a day. This weekend I went to sleep at 9pm on Friday to duck out of the pain, woke up at 3am, and couldn't sleep again until 25 hours later.
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Dizzybe, my diagnosis is similar to yours. I had a re-excision after my lumpectomy - the lumpectomy was on 16 August and the re-excision was 6 September. I am starting my rads tomorrow, My setup and tattoos were done on 30 September and the government guidelines here (NZ) are that you should have started rads within 4 weeks of the setup appointment. Our area is so busy that unless you are super-urgent, it seems to be at the outer limit of time.
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As far as insomnia, I just go with the flow. I am a jewelry designer, so I work until I can go to sleep and seem to be very productive at night. I wake up whenever my body tells me it is time. Here are some of my midnight pieces:
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Houston, my center doesn't do proton for breast cancer, though they do have a proton center. They use it for prostate and other types. By all means, get a second or even third opinion to ease your mind.
Nice, Michelle! Quartz
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Is anyone having back pains out of the blue that are potentially rads related? Or something related....but I could barely make it around the zoo today. My lower back was killing me.It started around Thursday.
Dizzybee: I started rads in October, about 11 months after surgery. Chemo took a lot longer than expected because of recurrent cellulitis, then a couple of weeks after I finished chemo, I had sepsis and neutropenia and was in the hospital for over a week. I'm a little big of an unusual case in that respect. But I believe there are some people in this thread that started their journey with me and are doing rads now.
Seraphima: I put my foot down about tape on my skin from the get go. It makes no freaking sense to me to put tape on skin that's being fried, preventing you from moisturizing it!!!!!!! Also, pulling tape off of sensitive skin when the "Radiation Manual" says not to take off the tape because you'll take off skin, too. I don't like the sharpies, but if it's between the two, I'll deal with sharpies. I have sets of them everywhere and just work really hard to keep the lines redrawn - usually 3 times a day or so. They also have this sealant they put on the lines on Friday. If you don't want tape, don't do it. You're paying a small fortune, or your insurance is, and they can make some accommodations for your skin. One day this week a woman in the waiting room was complaining about the tape and I said, "Just tell them you don't want tape on you." I want them to be able to care for me, but it's still my body. Also, I have LE, and any skin breakdown raising my chances of getting cellulitis. Right now, any time I get a mosquito bite on my left side.....and of course I hadn't had a mosquito bite in years until now. Now if there is a mosquito on the block it's going to find me and bite my left hand. Just tell them, no more tape. Be firm. What can they do to you? It's just a suggestion, especially since you're having such skin problems.
What lotion are you using? Have you tried any calendula gel? I hate for you not to be moisturizing right now. Also, the lavender spray I'm using might be very helpful, too.
And one last thing - this whole business about rads not causing fatigue??? Wth. That's like one of the most common side effects.
Serenity: I started stretching again the week or so before rads started, that was another reason the PTs were scratching their heads. Many of the stretches you listed are part of my routine, but it sounds like you've got a few in your repetoire that I haven't adopted. I'm stretching 3 times a day, too. I have full range of motion, or high pain tolerance - but it still feels like things that shouldn't cause me any problem to do are already pretty . . . . I don't even know the right word, except tight. Not supplementing magnesium at the moment, but . . . grrrrr, I wish I was at home because I have a big bottle of it . . . I will definitely give it a whirl. Thank you!
And lol, you sound like you do your moisturizing like me. I spray green tea, stretch until dry. Spray lavender, stretches until dry. Calendula, etc. Then I touch up lines, wait for that to dry, put on a cami if I might be leaving the bedroom.
IHGJoAnn: Thanks for that - I will definitely try it if the nausea gets too bad. With chemo I was downing Topo Chico with lime, but I know it wasn't enough to make the gallon mark. It may have added to the downturn the last several weeks. Right now I'm still managing to gulp down water. I am thinking the nausea is related to rads more than the antibiotics because I haven't really been nauseous since Friday and I'm still taking the antibiotics. Who knows with me though. Anyone that's been around me on here even somewhat through this knows that I get the strangest reactions and have the strangest stuff happen. I don't want to get that in my head too much - that rads is causing nausea, I don't want to have some mind-body effect going on.
thereisnode: I just reread your post about nausea and rads....that is exactly how it happened with me. A few hours later and it hit me like a brick.
Cwill: My green tea for the week is being done at your concentration levels.
And I'm with you on the anxiety thing. I had a complete breakdown during the sim. The thought of having to deal with more of an emotional roller coaster than I'm not now --- I can't think that far ahead.Unbreakable: I wear a cami under my shirt. I'm wearing a lot of little jackets and stuff to hide that I'm not wearing a bra. Then again, I've got the uniboob going right now, so I tie a scarf with long tails to hang over that side. I'm worried about wearing a bra or even a shelf cami. In the office I tend to put on a big sweater over and I don't think it's that noticeable. I was paranoid at first, but I figure they can deal with my one nipple. If I have to go to court, well, I'll keep my jacket buttoned, I guess. Coobie bras are super comfortable - you can get them on Zulilly for half price every once in awhile. Anaono has a bra that's made for women going through rads, it looks super comfy. My mainstay has been the Jockey Supersoft camis....especially since I can get most of the sharpie ink out using a ton of stain remover.
Ok, I've talked y'alls ears off enough tonight. Good luck everyone next week with rads. Lots o' water, lots o' stretching......and this week, finally it will be a normal human beings' amount of sleep.
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Nice jewelry, Michelle! I've been trying to keep myself occupied when I'm up, sleep when I need to, etc. it's not a huge problem since I'm not able to work right now, except that I know I'm not getting enough sleep or protein. But I do the best I can.
Frill, I'm in the last week, and I've complained about the tape before, but I really am going to have to insist on no more. The adhesive has been irritating the last few days too, and I have a badly burned, blistered, peeled area where one of the dots came off Friday evening. I thought at first they were very important, but the RO says they use imaging to make sure I'm lined up properly too. I had asked because sometimes I would lose 4-6 of the dots and they would go days without bothering to replace them.
I just don't know about my RO. I started off with a BAD reaction after my sim appt, which no one wanted to attribute to the CAT scan (and without contrast, reactions are almost unheard-of - I looked it up in medical journals). But my skin appeared burned over the imaging areas, and it didn't heal. So when rads started making it worse, I don't know, he said the rads were not causing the pattern of burns I was getting (though people on here described it). He blew off questions asking for referrals to a lymphedema therapist to prevent that, saying it couldn't be prevented, he said rads don't cause fatigue that he ever heard of. I don't know - everything he's said just seems to be opposite what I expect. It seems like he doesn't want to blame ANYthing on the rads, though he did acknowledge my skin was breaking down. I'm almost done, thankfully. I just hope it's all been done as it was supposed to be. My actual being radiated when I know the machine is on is very brief.
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Frill - Yes, sounds like we're doing the same spray/dry/lotion dance! Where do you feel tight? My tightness is related to cording and my mastectomy scar. I used to have pain in my forearm due to cording, but that went away when I started stretching more deeply. I feel tightness in my armpit and my scar, but only when I stretch.
Seraphima - Wow! Your RO doesn't seem to want to help. I was referred to a lymphedema specialist (kinesiologist) by my BS, but this was before I saw any other doctor. Ask again so that you can be measured and monitored. Fatigue from rads is definitely real and known by other ROs. My techs gave me a sheet of paper with after-treatment expectations and recommendations. It states fatigue is a common side effect and may last several months.
Hope everyone has a good week! The skin in my armpit is still sensitive 1 week post rads. For sleep issues, I take melatonin.
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So the aquaphor is a mess and driving me nuts, not to mention staining. The techs said to get anything approved before I use it. Nothing with metal in it (sounds reasonable). Does anyone have a list of what "metal" looks like when it's on an ingredient list? (I'm guessing aluminum stearate would be a no-go.)
My first day back at work (starting with 5 hours/day)--It is GREAT to be doing something besides treating cancer or treating the side effects of treating the cancer....
Frill ans Serenity, I am also "tight" feeling in my surgery arm even though I have full ROM. Hoping this will retreat with more stretching and time.
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I had my weekly visit with my RO today. It went ok. My skin "looks great," "feels soft" - not because I've done anything *they've* said to do. I guess Thursday will be two weeks, when the fun is supposed to begin starting. I am just not going to think about it. I'm in extreme anxiety about this 24-7 and it's like I'm supposed to be grateful to be alive.
Thursday I'll be 33% done. I need to keep my eye on the prize.
Seraphima: I hope it goes ok when you give them the no tape speech. There's too many articles that say and hospitals that have the policy - don't apply adhesives or tape to your skin during this time. And your RO and my MO should go hang out. Their lack of information and ability to communicate sounds like they were made for each other.
Serenity: Mine sounds like where you're saying - my chest, my upper arm. But my PTs swear it's not cording. I had some when I first started in my forearm and the PT broke it up my first session. This feels different, like a muscle that ......used to be 6 inches long and now it's 5 inches? I feel things stretching, and after MX I improved my ROM so much over two weeks they couldn't believe it. But this doesn't improve. I suppose it's not during rads, that I just need to accept it and keep stretching. It's just that I've been saying it *before* rads.
reflect: I'd be happy with stretching and time if it hadn't already been almost a year. I guess I "should just be grateful" that I have ROM. I don't know how long surgery recovery takes, and MX with chemo then rads probably isn't normal recovery either. It's blow after blow after blow. Taking pain meds doesn't help either, although that's not really what I want anyway. But it would be nice to get some relief when it's too much.
I have to take the dog out, then just cry myself to sleep until I get up to go to rads again tomorrow.
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I'm on week #4... today was treatment #21 of 28 almost done!! It's also treatment #6 of 13 with Bolus and my skin was GREAT until last Friday... it's very red above my breast...but I suspect that if I still had my natural breasts things would probably be more painful. I just don't have much feeling there any more. My chest is itchy and red, much like a bad sunburn.
Overall it's really not terrible. Whatever breaking down of my skin that happens will heal...
Hoping everyone is doing well! I'm enjoying this cool weather in MI...
Saw "Book of Mormon" last week... HILARIOUS!
Went to Chicago for the day on Sat for my youngest daughters 15th birthday. Had a blast...
Going to see Rocky Horror Picture Show this Friday... can't wait!
k
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Someone asked about proton therapy for left breast cancer. I am currently receiving proton radiation therapy at Scripps in San Diego. If anyone has any questions, I'd be happy to answer to the best of my ability. I do know that MD Anderson is supposed to be on the leading edge of proton radiation therapy, so they would be great for a consultation.
On another note, I read that a number of women are using lavender spray. I used to use lavender lotion until I found out that lavender essential is supposed to have estrogenic-like properties. You may want to check into it, but I believe that lavender is not recommended as an essential oil for women with estrogen positive cancer.
Hope that helps! Theresa
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thanks, everyone.
Saw my RO again yesterday, for the last time during rads. I have only 4 more boosts to go - Whoo-hoo! I'll be glad to get past this part!
He's at least ready to admit now, finally, that the rads have side effects. It's kind of strange, part of his speeches seemed to be like he thought what he talked about might be a suggestion and I'd develop problems he talked about? I don't know. I'm not going to bother trying to figure him out. If that much is true, I wish he hadn't scared me half to death talking about me being (I forget which) - either estrogen negative or progesterone negative, and how aggressively that cancer returns. Well, I followed up on that, and found out I'm actually triple-negative, so really not thrilled. I really think my cancer up till diagnosis was very UNaggressive, because I can trace back symptoms for five years before my diagnosis. While I had grown a fairly large tumor, there was no metastasis, thank God, so all things considered, I think I've fine really well. I don't want to start worrying now more than I need to.
I did get more tape.
The techs insisted they would have to. I told the techs NOT to remove anything over the places where my skin was very irritated and breaking down. I told them NOT to put more tape on those areas either. I told them they would just have to find another way because I can't handle it. Anyway, I needed new marks yesterday for the boosts, and they asked me before taping, and they were far enough above and to the side that it wasn't a problem, mostly. Though she did put four toad dots in succession that moved to the underside of my breast. Anyway. It's almost over. It took the better part of an hour I think for them to get me lined up and get new marks, so I hope I can just make it through this week - I think I can. I saw a different oncologist yesterday - I think mine is out of town. She was wonderful. They take very good care of me.
One thing they offered is I have a form for temporary disabled parking. I like to go to outdoor festivals and fairs, etc, but I have missed them all because parking is usually many blocks away, and I am afraid to go and give out right when I get there and not be able to make it back to my car. But I think maybe I'm fooling myself. Those events take a lot of walking to enjoy. Last week I stopped at wal-mart on the way home from rads, made it to the back of the store, and could barely finish shopping for a handful of items. I hate hate HATE how tired this makes me feel!
I think I need to find some recreational things to do that don't involve walking (or the swimming I missed out on this year). Something besides watching TV. I actually got a notice from my home internet provider for the first time in three years that I've used almost all my data. Netflix I guess. I need something else to do.
Being out of work for months has put financial limits on that too though. But I'm sure there's something. 0 -
I have ONE more day! Needless to say, I'm a happy woman today.
Funny for the week. I had my weekly appointment with my RO after my radiation on Monday. He said "the good news is that you have 2 more days left. The bad news is that we need to add another 6 weeks of radiation treatment on". I replied "You can add anything you want, but I won't be showing up". He said "That was a good come back" and we laughed.
For those of you just about to start of have just started: I honestly did not have much of a skin reaction. Little bit of pink. I had to keep showing my (adult) daughter asking her to compare the left (radiated side) to the right. I have had sunburns worse than this. My nipple was tender if anything brushed up against it or put pressure (my bra sometimes) on it. Of course, changes can come about after treatment stops (tomorrow, wooohoot!!) but for now, I'm good to go. I hope this gives others hope.
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Congratulations ayr! How wonderful to be done, and without big problems with your skin. I'm happy for you!
I had a set back--they called and had me come in early today for CT again as I had had a seroma (apparently, no one had mentioned it before) which shrank so much it made the planning no good. So I get a couple days off to wait for the new plan, then start again. I'm actually hoping to get Friday off too, because there's a fun event north of here (radiation is an hour south)--that would be sweet.
Frill, you have had a really long road. Soon you'll be done, and I hope that's a very happy time for you.
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I've had my first two (of 25) and before I had the first one I had silicone dressings applied over the entire area including my armpit. These will stay on till I'm finished. These are being used now as a result of this trial http://www.southerndhb.govt.nz/news/media-releases/breakthrough-helps-breast-cancer-patients/#.WBBvpC196M8 The RT on the left of the photo is the one who applied my dressings. Does anyone else have these on?
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Hi AmusingSoprano, the silicone dressings sound like a miracle! I haven't heard of this before and I would love a link to the oncology journal the study was published in. I'll forward to my radiation onc!
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I see a few of you have just finished or are finishing this week! I'm so happy for you guys. My last day is Friday
So many have told me how much easier boosts are and how fast...that has not been my experience at all. It takes twice the time as my regular treatments. It involves way more adjusting, x-rays, sharpie markings, and measurements. My hands are completely numb by the time I finally get out of there. Thank goodness I listened to my DR and didn't go back to work until next week, or I would be late every day this week.
Those silicone dressings sound promising. AmusingSoprano keep us in the loop as to how they're working out for you, please.
Sabrina
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B"H
SABRINA - GREAT - you are almost finished! i actually was rereading a bit from the beginning of this thread earlier - read how nervous you were about this part of the journey - and here you are almost finished! So happy for you and all the other women here who are seeing the end of this
:-)
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The silicone dressings do sound promising. I could have wished for something like this but at least I will heal.
I'm happy for all of us who are finishing this week too.
I am finding the appointments for the boosts to be more difficult. Much more aligning, marking each day, and the radiation part itself seems to take twice as long as well. I was sometimes in and out in as little as 15-20 minutes if no waiting, and it's been 45 and 1-1/2 hours so far this week, with the boosts.
But I had a good day yesterday, thankfully, and the worst of my skin breakdown is actually beginning to heal already, which the RO hadn't expected that, so overall I think I'm doing pretty well. I want to just say I'm doing fine and get on with things, but I've been made kind of cautious about thinking a small improvement means I'll keep going, since I've been repeatedly disappointed on that score through this whole process. I think I'm generally an optimist and just want to get back to that.
I am so done with this whole cancer thing, lol. 0 -
I just started on Monday. The most difficult part so far is holding onto those bars without my shoulder hurting. They had to consult with the Dr as they told me not to move yesterday. I was thinking please hurry!
The nice part is my work day ends a little sooner, but then I feel like I don't have enough time at work.
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I saw my RO for the first time today. Really like him and he takes plenty of time to answer all questions and explain everything. I'll have my CT scan on 11/1 and then will most likely have the sim and #1 together on 11/7. He said to plan on 28 regular and 8-9 boosts. Yuck, but at least should finish up between Christmas and New Years, more than I expected, but it is what it is. They use the photon beam, not proton, but I just want to get it done.
Hope all in the throes are doing well, and congrats to those finishing up.
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Hi - had 1 or 25 done today. in and out within a half hour. came home and put cream on right away (forgot it before we left). Hoping for no issues during treatment.
funny thing - i had to renew my drivers licence with photo - weird that is less than 6 months my hair will be much longer again. i was not able to keep my orig pic. oh well, i was able to wear my knit cap!
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I'm done!! No bell ringing or anything at the hospital. They do NOTHING when you end but say congratulations. Oh well, I never had music or anything to look at on the ceiling either.
Unbreakable - at first, I had a hard time with the bars as well. Then I realized I was tensing up and gripping them. I loosened my grip and kind of cupped my fingers around it instead of gripping it with my thumb wrapped around. So, it was a loose cup hold where my thumb was resting with the other fingers. Hope that makes sense. When I was gripping and tensing, my shoulders and arms hurt so bad afterwards. Stretching beforehand is good too.
Sabrina - my boosts were easier. But, maybe it was because I went from 14 zaps to only 1. The boosts was 24 seconds long (I counted the first day of boosts). 3 more days for you ~ almost to the finish line! :-)
Seraphima, YES YES YES on being done with the whole Cancer thing. I just want to be ordinary now and live my life.
My tip for the day: Avoid friction as much as possible during radiation. The less friction on your radiated areas, the better. I would even make sure I did not swing my left arm when I walked. I showered with my back to the spray so my areas would not have the bounce of water no matter how soft on them. I would carefully pour mild warm water from a plastic cup I kept in my shower over the areas during a shower. I did not shave the entire time during radiation (this was hard as I am not one to go without shaving). I did not use deodorant either. It never had odor and why would I go through the possible pain of bad friction over shaving/trimming. I will try to keep posting tips that helped me.
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I'm 12 days out from my last rad treatment, and I'm back in a regular underwire bra!
Congrats to those who are finishing up
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Dara, I start on Nov. 2... 3-4 weeks...It'll be a Happy New Year for both of us..
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reflect - Good luck with work! Nice to ease yourself into it.
Frill - You're making progress. My first week was the most stressful. Focusing on my breathing helped me.
ClarkBlue - I loved the Book of Mormons! Chicago is one of my favorite places to visit. Glad you're having a good time.
Seraphima - Yup, Netflix eats up data. We switched to an unlimited plan a few years ago. With me working from home and 2 teenagers, we had to make the switch.
ayr1016 - Congratulations! So happy for you! Glad your skin held up well.
AmusingSoprano - Please let us know how the silicone dressings work for you!
Sabrina, Unbreakable - To keep my hands from getting numb, I needed to loosen my grip on the bar. Often I would drum my fingers on the bar while I waited.
Happy healing, everyone!
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