Winter 2015-16 RADS
Comments
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Hi! New to the Group.
It looks like my first session (or at least final measurements & sim) will be March 8th. Looking at about 33 visits of whole breast radiation & 1 weeks worth of targeted boost.
I'm glad this will be easier than Chemo, but I'm anxious that this will be the procedure with the most damaging and lasting effects (Assuming chemo hasn't rendered me sterile).
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Welcome Welcome DLcygnet - so so sorry you are here but glad you found our awesome group! I will add you as Starting in March 9th - let me know if that changes! Hugs to you on chemo and fertility - I did the AC + T Regimen and it put me into menopause - you are much younger than me and I think the odds are good that is not permanent for those that are not close to menopause .. Good luck getting started with Rads and let us know if you need anything!
Mary
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Twnkltoz - glad you are at least feeling better but sorry about the skin burns - your bath sounds interesting and glad you got some relief! I have 2 areas that are red and a little raised that are concerning so hoping they don't open... itching has started with me too and the worst is on my back shoulder blade .. really hard not to scratch! Hang in there - Hugs!!
Mary
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STIFF MUSCLES: YES.
I felt like that needed to be capitalized, because right now it's my primary complaint. Let's add "creaky knees" to that, too. The rads people think I'm nuts. I'm glad I'm not the only one.
mdoc, my RO just said something to the effect of "boosts meow meow reconstruction." I can ask him more if you'd like to know! His line of thinking is that more radiation equals less "success" (these medical terms--sheesh) with reconstruction. . . . I think?
JerseyGirl: yay! Keep on truckin', sister!
VickiRides: hello to a fellow August chemo gal! I get lasers; it's how they line me up on the table. No flashing lights, though.
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My muscles are so stiff I don't want to move and knees are so creaky they are painful. What to do
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Yikes - after reading recent posts here, I'm hoping my muscles don't become even more stiff with radiation. Today is awful at 3 weeks post last chemo. I hiked 6 miles Saturday after running a couple of miles and rescuing 2 cute abandoned puppies and carrying them home, and then ran 8 miles yesterday....but spent the rest of the day on the couch. You may be thinking that is a lot of exercise, but for me it isn't and it was really crappy....so slow and painful. It feels awful but I do it because it makes me mentally happy to be outside at least trying to do what I would usually be out doing if I didn't have cancer and chemo txs. My general energy and cardiovascular endurance is pretty good (not great, but good), but I just can't put it to the use I want to with exercise and adventures. Sounds like none of us can. *sigh* At work today it is hard to get up from sitting and walk around the hospital, and my legs are so swollen. I stopped taking anti-inflammatories on Saturday to see what happens and I am realizing that my legs have not been getting better, I've simply been masking it. sucks! I'll get there eventually...just need a mental adjustment. No pain at rest, it is all with movement.
Mdoc - my chemo was 5 months (6 rounds) and you and Kate are so right....We will get there. I need more patience in giving my body at least as many months to recover. It's just hard having patience being be a patient!
Speaking of which...I saw a patient today! yay!
I even got to fabricate a custom splint/orthotic. I'm sure she first wondered about the bald woman calling her back to be seen....but after asking if she or her husband were sick (in case I needed to mask up) I just openly told her why I asked about sickness, why I'm bald, and why I'd have to schedule her with another therapist for follow-up. I'm comfortable with my open baldness, especially at work, but the majority of Navajo women (and some men) have such loooong beautiful dark hair - like I did - so I'm a little envious seeing it all the time! I also really miss having my own patient caseload and helping people. I've only seen a handful during chemo to avoid their germs while immunosuppressed.
Welcome DLcygnet!! I'm also anxious about rads likely having the most damaging and lasting effects.
Kate - I am laughing about you hearing meow meow in there and thinking about the movie Super Troopers....right MEOW! I hope you know what I'm referencing!
yes Kate and Mdoc, more radiation can often mean less successful reconstruction. My original recon plan (tissue expanders followed by small 'gummy bear' implants later) was aborted on the table during B mastectomy because of unexpected positive lymph nodes and the eventual need for radiation. 30% failure rate of implants/expanders during radiation per my plastic surgeon so he won't do it prior to radiation, but considers it later if the skin does OK (though more likely to do other types of recon). A friend of mine went through this last year and her expanders ruptured through the skin during radiation (they were placed at the time of mastectomy), she had 3rd degree burns and ended up needing a latissimus skin graft to cover the defect. Scary!
counting down to radiation starting...1 week to go.
- xo
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hi guys. Well I am official. Totally uneventful and super quick first treatment. Can't believe I have to do this 32 more times.
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Hi everyone! I've been lurking a lot and not posting much, but all the info everyone is posting is so helpful. I had treatment #5 out of 30 today. No skin effects yet, but I do think I'm going to have to give up on bras soon. I have tried the Walmart front closure bras, as well as several other options, and it all just irritates the area under my arm on my side. It doesn't look swollen there, but it FEELS swollen and flabby and just yucky. So...here I go out into the world with one saggy 36C boob and one concave side of my chest...sigh. It does feel SO much better just to wear a tank top (I bought several Calvin Klein 2-packs from Costco) and something over it, even though I look dreadfully lopsided.
I do have a little crush on the guy at the check-in desk...he is always so sweet. And the valet parking guy (they do free valet parking for radiation patients) already knows me by name, even though there are about 900 cars that come through the cancer center valet every day...sort of insane...why is there so much cancer?
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Hi Ladies!
Yes mdoc, I went from Chemo straight to Rads, not much rest in between, plus working. I seriously didn't think I would ever feel rested again on Friday, and dreaded the rest of rads, but I rested over the weekend, and felt pretty good today. Completed #6 of 16 today, no color/pink yet, so crossing fingers I hold up well.
Andra, your fears of rads are understandable, it's the unknown, how will we react? I love the idea of henna on your head. Would you post a picture? I am sure you will be beautiful!
Durhamgirl, I know the feeling of the rad side feeling yucky. It's not swollen, doesn't look swollen, but it feels weird. I decided today I am so looking forward to surgery to get my right breast OFF - hate being uneven, my "foob" moves around in my bra, it's so annoying - I walk around work feeling (and probably looking) lopsided, I round a corner where no one is, and adjust myself. Ugh.
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Hi Everyone
They really liked the thank you basket. I got super tired the first two days with muscle weakness especially in the knees. I would be sitting and then all the sudden I would be falling asleep. Now I get tired off and on. It seems to accumlate over the week. Then I have two days offf to recover. Skin is doing ok red spots that are itchy and I'm pink. MDOC I still have the cold....sadly. Week four! -
Hi all
I usually go bra less. I also have painful knees and joints. I'm on lupron that also suppresses my hormone levels which effect my joints as well. But maybe now I'm thinking it could be the rads. My Pt recommended moving my joints before standing to warm them up and it seems to help some. Also walking or elliptical also helps. I have a naturopath apt on the 9th and I hope he has some ideas.
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21 of 30 today, and fatigue is starting in earnest. So far, my skin is annoyed but my normal mastectomy bras are fine. My foob stays put, but I doubt anyone would notice if it didn't because it's so small. My rads side definitely feels off. I'll bet it would feel worse except for the mastectomy numbness.
My bone/joint pain and weakness magically lifted a few weeks after I finished Taxol, just before I started rads. While I'm not as strong and have less endurance than I did before, it seems normal considering I haven't done much since last July.
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Thanks for the welcome, Mdoc. I called my RO about the Mepitel and of course they do not use it.They gave me Miaderm which I'll put on in the morning before my first treatment. It has calendula in it.
After reading everyone's posts I am curious how much more joint stiffness I'll feel over the course of treatment. If I don't keep moving, my knees get stiff anyway. But I am going to try not to worry and to take each day as it comes.
Andra, I will be following your progress with rads and how it affects your exercise. I too am very active. My knees don't allow running, but I do a lot of hiking and backpacking in the Southern Sierras. Fifteen miles is kind of an average day of hiking for me, or at least it was before all this cancer stuff started interfering. I'll be trying like heck to keep hiking so I don't get too out of shape. At age 61 it's harder to regain one's fitness. I love New Mexico! Last March I was in Las Cruces for the Bataan Death March at White Sands missile range.
Cheers to all!
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Hoping that this is my new friend.
My underarm is extremely raw, the doctor says it's because of friction during the day. He told me to get bag balm from the farm store. ..... It's much cheaper there then the drugstore. 6.99
MDoc. My shoulder feels much better I think it was from having the weekend off.
I might only have four more days of these 30 minute sessions, and then five shorter sessions. My RAd dr. Seem to change treatment again yesterday . Now it might only be 30 sessions instead of 33. I'm not going to argue. 😌
Oh, i've given up on a bra for now. It is scary . I don't want to give myself a black eye with the floppy.
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Hello everyone, I have a question. I started radiation treatment last Monday (thought I was starting on the first, but that was just a consultation). I had to get a CT scan Monday and then Tuesday they did some X rays before the actual treatment. They said that I will get X rays once a week to make sure everything is lined up okay. Was wondering if anyone else is getting these once a week x rays in addition to radiation. Seems like a lot to me, but maybe it is just standard practice? I have had six treatments and so far so good. No side effects yet:)
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Maggie - Hi I don't post very much these days but yes I am getting scans/xrays once a week. Kinda cool to see them and look at your lungs and heart. But yes it does seem excessive to be exposed to more rays etc.
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I went for follow-up appointment with my RO this morning. She said that my skin is healing very well and that it will probably stay tanned for awhile. She wants me to finish up the Miaderm and then switch to Vitamin E oil. She also wants me to begin deep tissue massage over the entire area that was radiated to help prevent formation of scar tissue and lymphedema. I will see her again in 6 months and then annually after that as long as there are no problems.
MaggieMae123---I had 2 films weekly during rads. The technicians told me that they were to ensure that the target fields were being radiated according to plan and so they could make adjustments if they were needed.
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Moondust- may want to check about applying the lotion/cream prior to your treatments. I was always instructed not to apply anything until after treatments and at night. My rads appts were daily around 10am. Hugs!
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25 down! On to boosts!!!! Whoohoo! Techs said boosts will be super quick!
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Hi all...
Maggie, yes, I'm getting x-rays each week. Not crazy about the idea, but I guess it's best to be sure that the rads keep going where they're supposed to go.
I think my bone aches are left over from chemo (6 weeks PFC now) or I certainly hope so! I certainly don't need additional aches & pains from rads as well. Skin issues will be bad enough. I'm still tired much of the time but have finally managed to walk my dogs down & back up the driveway a couple of times now. It had been more than a month since I could do that, between total fatigue and very cold, snowy weather. A month ago, I had to stop and rest several times coming back up. It's a steep driveway. Now I can make it most of the way, stopping only once, so perhaps I'm improving more than I realize!
I haven't worn a bra at all for many years since my breasts are small and I never really needed one. I just wear camisoles all the time these days, mostly for extra warmth. I guess I'll have to find something I can tolerate once the weather gets warm so I can pad the missing boob when I'm out in public. I have no plans for reconstruction. At my age (66), I just don't need that boob or any additional surgery.
Will have #4 of 28 this afternoon. The drive back and forth to the hospital takes more than twice as long as the treatment! No real skin issues yet, but i assume they'll show up at some point. Sigh.
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Woo-hoo, Jersey! Yes, boosts are really much faster than reg rads. How is your skin?
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Happy, skin is doing well, a bit red today, but now that I'm on to boosts, I don't think that'll be a problem as I'm continuing the cream...
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Fearless, the lymph lies close to the surface of the skin and it seems to me deep tissue massage would damage it. I would check with the LE expert. MHO
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El Tigre, Fearless195 and luzeelu, Thanks for the replies. I'm glad I am not the only one. Guess maybe it's standard practice. I am off to get some more radiation! Take care.
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Congrats Jerseygirl!! My boosts took longer for some reason but I know everything is different for everyone.
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Maggie - I will have xrays taken weekly too.
Kate - Hello, fellow August girl! There were lasers to line me up, but I had imagined a laser sweeping across my body during treatment. With chemo I could watch the bag's level to see how things were progressing. It felt weird to have no feedback during rads, but I guess I will figure out the machine's pattern soon enough.
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JerseyGirl, which cream are you using? Yay on getting to the boosts
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Thanks, HH. I checked with them yesterday and they said do not apply within 2 hours of my appt, which is at 1:30 today. I'll take my shower and apply my salve way before the deadline.
I'll find out the daily procedure today, since it will be my first real go with the read rads.
Hooray for everyone's progression! I love when there is an end in sight. After today, my end will be in sight too. At least my end for now, because none of us knows the future.
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I get weekly port films, too--and I'm glad, in spite of the extra radiation, because I'm having left-sided chest-wall rads, and we want to miss important bits (like the heart and coronary arteries)! I get my x-rays on Thursdays, and they've made adjustments each week to table position. So I think those port films are doing something. . . .
The good news: I finally forced myself to check my insurance statements, and my insurance is paying 100%. I'm very, very grateful, given that so far this year, between Herceptin, rads, and therapy, they've already paid close to $80,000.
My lord, that's a lot of money!
Today I asked about the shoulder pain, and they said to take drugs. I'm not all about taking drugs, but I get creakier and creakier as this goes on. I can't wait to 1) stay up past 9:00 pm, and 2) not feel like I'm 90 years old AT 9:00 pm.
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KateB79 - which drugs are you supposed to take?
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