Summer 2015 Rads
Comments
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Great idea for a sleeping mask! Especially due to studies like this: http://www.integrativeoncology-essentials.com/2014/07/light-exposure-night-increases-breast-cancer-growth/-
that indicated that even a little light can decrease melatonin and tamox efficacy AND increase breast cancer growth in rats!. The only light receptors that we have are in our eyes so I would think an eye mask would be a great idea!!! :My twin sister works nights and swears by her mask - says she is like a parrot, cover the cage and she is asleep!. The mask she recommends is
There a lot of less expensive masks out, she says one of the important things is that it is coutoured so your eyelashes - (HA - I have 3!) - don't touch the mask. I am going to order it today. thanks for the idea!!!!!!
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Can you all recommend what brand and dosage of melatonin you are using? I've heard melatonin is not regulated by the FDA so there could be inconsistencies between brands.
And how much melatonin do you start with and take?
PB
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@pboi Melatonin whacks me out more than Ambien! I have bottles of 3mg and 5mg Melatonin. I suggest you bite a half of the 3mg and see if that helps with sleep and especially if you can function the next day!
@marksgirl Thank you for that useful info on sleeping masks! I'm racing over to Amazon to look. I use a soft comfortable one that has lavender. Have 3 and keep as back up.
How's everyone doing? I'm very tired this weekend. 12 done -- 8 to go.
Gentle hugs all.
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Metta - Yes, I know - I was doomed to RT from the start. I had hoped, however, to avoid s/clav tx, which I did end up with. Ironically, that area is doing the best, although where it exits, my back is really, really tan.
I guess lots of us having trouble sleeping when we're away at camp... Melatonin helps but doesn't solve the problem for me. I've had sleep issues for a long time but they've become extreme with RT. Even Ambien doesn't do much for me.
Natrol is one recommended brand of melatonin; they have a liquid form (place under tongue for faster absorption, per RO) as well a time-release formula. Look for the purple label - it's pretty easy to spot.
I realized today that while my skin is doing "great" (per RO and nurses) my body is not; the area aches, the breast is swollen, the scars hurt, my clothes/bras don't fit, I'm gaining weight, and I just don't have any sense of well-being. I've been religious about exercise, water, protein, (trying to) sleep, taking care of my skin, etc., and my body feels out of control, unpredictable and alien. My concentration at work is shot.
I know there are worse things to go through but this is really getting on my nerves. Where are the camp counselors when you need them??
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Peruna and Hopeful...I feel like you too. Had 15/25, and feeling tired too. And like you mentioned trying to take extra good care of myself, but don't have a sense of well-being. Trying to keep up with the exercise in hopes it will help with fatigue/sleeping. Thankful for now my skin is slightly pink/tan, with no other issues, but we'll see how long it can hold on.
Hang in there ladies!
PB
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Hopeful, this too shall pass. I promise this is only temporary. Even on all this medicine for radiation pneumonitis, I feel measurably better each day. One morning last week I woke up to my poor girl no longer swollen...it felt so much better. Only problem is she is now one-third the size of her sister. (I had to have a second lumpectomy for clear margins.). Luckily, my trusty $1.68 Walmart tops help round her out and makes the size difference less noticeable. I'll never wear a normal bra again unless it is with formal wear with a good old fashion falsie.
You are doing an exceptional job of taking care of yourself. You will be rewarded for it.
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Thanks so much for your encouragement and the promise of the light at the end of the tunnel, SweetHope. I think we all needed that.
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@Pboi, Thank you for your supportive thoughts. I've gone downhill and hubby says I'm burning even though thermometer says 98.6. I radically switch from feeling "like me" (weaker version) to feeling sick/flu. It's so depressing. I'm seeing my GP tomorrow since Oncologist said not Radiation, but Kidneys off.
Is anyone else having strong days and sick days? So far the Radiation is least of my problems..yes tired, lotioning like a mad woman and that's keeping stiff swollen breast somewhat controlled. Wondering if my chemo HUGE CHEST rash will ever get better with Zyclara (very rough treatment)
Good luck this week ladies. X
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SweetHope - thanks for the tip on Melatonin, I did not realize it helped restless leg (which has gotten much worse recently). We have it in the house as my kids use it occasionally for sleep problems, I will definitely try it. I am also having fun with hot flashes at night (menopause as a side effect of chemo, but I'm not complaining - I am 49 and, with chemo, I went straight into menopause and completely avoided per-menipause, which was pretty bad for my mom).
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Thanks for the suggestions on face masks, melatonin and podcasts for the insomnia. I used to use face masks but they seemed to make my face sweat. Maybe I wasn't using the right ones.
Hopeful--I have really been focusing on taking good care of myself with exercise, healthy food and less wine. I am discouraged that I am gaining weight and can't imagine it is due to the rads. Otherwise, I am doing well with energy levels and lack of skin problems.
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SailorBev - if you are managing to keep your energy up and your skin is doing well, I'd say you're doing great. The weight thing IS discouraging though - no doubt about it. I wish I could understand what's at work there.
Bt the way, I picture you leading a group of us in our canoes as we paddle across Lake Iwannaswim.. Not exactly a sail boat, but we can definitely add them to the camp offerings.
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It's official! I'm done! My last rads was uneventful. Today was a bolus day so I took a strong parting shot to the skin, which looks angry red right now. No bells to ring at my RO, just a hug from my favorite tech. I sounded a bell on my phone just for the effect. I have to admit I cried a little. For me it represents the end of months of active treatment and the beginning of the next phase. Sure, I'll be taking Arimidex for the next 10 years, and I still have reconstruction and possible ovarian surgery ahead of me, but the "hurt you to heal you" part of treatment is done. I feel a lot of gratitude for all of the wonderful medical professionals that have taken care of me thus far.
Thank you to everyone on this board for all the great ideas and inspiration during tx!
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Congratulations Darumama! How wonderful you're done with treatments and even though the journey continues on. Celebrate -- do something nice for yourself today! Warm hugs.
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Congratulations Darurama! Beautifully said, it brought a tear to my eye! Hugs and blessings on the rest of your journey!
~Midgie
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Good morning!
I received a tip today from my radiation techs that I wish I had thought of myself! I am swelling under my breast, and my bra bands are tight. When I mentioned it they sad "go buy bra extenders!"
Excellent suggestion! 14/33 rads down, so glad to get this advice!
~Midgie
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Darumama--congratulations!! What a wonderful attitude you have about your treatment and the medical professionals. I wish you well in your upcoming treatments and surgeries. Keep us posted.
Hopeful--yes I am indeed doing great and I am grateful for that. I had another night of insomnia, though. I am really going to try to get a handle on that. I ordered new eye masks and will stop at the pharmacy for melatonin today.
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Darumama - Congratulations! May treatment never darken your doorway again.
Here's to rapid healing of all the angry red areas, success with yiur A/I and a return to a sea SE of health and well-being.
SailorBev - good luck with the melatonin, etc. let us know how it works for you.
MidgieMoon, I hope that works out for you. It's a good idea as long as the breast hasn't swollen to the point it doesn't fit the cup anymore (as it has in my case, sadly).
Hope everyone has a good week at camp.
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darumama. So glad for you. Pls keep in touch. I'll pm you.
I'm at treatment #16 today. No color changes yet. RO said skin looks great.
Energy still good. Had one nap day last wed. Otherwise still have great energy. Still swimming and doing my outside work
Someone on another board shared this link which I thought was great on diet for bc and those going on hormone prevention pills.
Http://foodforbreastcancer.com
Not sure how to set this so its a hyperlink tho.
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Darumama: YAY! Congrats!!!!
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I don't normally have insomnia. *Knocks wood* I do, however, have problems sleeping Sunday nights. I think I get apprehensive with the whole week of treatments ahead. (It's almost like starting over when we get a break.) One bit of advice - when you start feeling tired, go to bed. Don't finish surfing the web, etc. I noticed when I delay going to bed after starting to feel sleepy, I get a "second wind" and become wired lol!
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Darumama...congrats!!! How have the Lupron and Arimidex going for you? I got my first Lupron this morning and am so nervous to start the Arimidex.
Is melatonin considered a supplement? Ok to take during rads?
PB
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Congrats, Darumama! Ring all the bells you can find.
Peruna - hang in there. I hope you're having a better day. I'm not going through what you're dealing with, but yes, some days are a bit better, some days I can barely drag myself out of bed.
Midgie- they make bra extenders? Who knew?
I finally picked up some of those $1.68 camis yesterday at Walmart to wear under my bra. A Huge thank you and shout out to everyone who recommended these things. I thought I'd go mad from feeling a bra on my breast, and the cami cushions just enoug to make a world of difference. The bra stretches enough to accommodate both breasts, but I'll search for an extender if I need that.
After a weekend of mostly sleeping, I had 15/21 today. One more and I start 5 boosts. Made it to art class after treatment today, and after some extra espressos, and only left 1/2 hour early this time. I know I'll pay a price for this over the next couple of days, but it was worth it. Painting gets me outside of myself in such a healthy way. It also decreases my crankiness factor by a lot, always much appreciated.
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Hi Everyone, I went for my "dry run" on Friday and today I was supposed to get the "real thing" only to find out that the technicians doing the lining up on Friday, didn't do it correctly, so, the two technicians there today had to line me up and take pictures again, so no Radiation, I was so irritated. Has anyone else have this happen? I also found out from my Oncology Nurse that I have to wait 30 days after radiation to start Tamoxifen , just like waiting 30 days after chemo to start radiation, she said that they do it that way so your body has time to heal, I just want to get this show on the road, has anyone else had their treatment center space the different treatments out?
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Darumama, Congratulations that is awesome!!
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Pboi - My RO recommended melatonin during radiation. I was already taking it, as she knew, but suggested the liquid form might work more quickly. You could ask your RO but I doubt they would say any differently.
6doggies - I know that happens. It's frustrating but at least they caught it before tx. started. I think it's pretty common for treatment modalities to be spaced out, in part so that you can track which treatment might be causing which side effects. Hang in there!
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Congrats to those who have finished RT and who are close to finishing! It's a big milestone. It will no longer be so much of your time being taken up by treatment, which is so much better and more back to "normal." I can hardly wait!
I had chemo before surgery and RT and one of the good things about that is that surgery and RT seem a lot more bearable in comparison! This doesn't negate the scariness and discomfort and non-normal-ness of surgery and RT. I just have more tolerance for what's going on since it doesn't impact me as badly as chemo did! Basically, I feel much more normal even going in every day for treatments and having a red, tight breast and irritated, darker skin under my armpit, etc. At least I can eat fairly normally and do some things without feeling like sitting down every two seconds! (Chemo really sucked for me, and I didn't even get nausea or bone pain or low white cell counts! Months later, I'm still recovering from its effects...)
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OK... so I had my first BOOST! And although I thought they mentioned a BOLUS, that's not what I had!
My techs told me that the regular treatments were protons and protons are small particles that shoot all the way through the body. I had 28 of those. Now I will have 8 of these boosts. They will be electrons and those are bigger and will stick more to the surface. This means more red skin and it will definitely peel. But I should just continue to use lots of Aloe Vera, Calendula and maybe Aquafor. (I haven't been using much of Aquafor because it's so goopy! but probably will start now.) The actual pulses or whatever are very brief and don't make a sound at all.
They use a copper block (around 4" square and 1" thick) that has been laser-cut specifically to a sort of cloud-like shape cut out through the center that covers the area of my tumor and incision. I guess it's like a stencil of a sort, so the electrons only go through and hit that area.
It took a while to set up and a RO came in to check it all out, and they took pictures. They removed my one remaining sticker and used little marker dots to mark the area of that little cloud-shape that is being treated...
Anyone else get boosts like that?
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btw... I think my margins were pretty narrow, though the docs didn't say anything about that... they definitely were something like 1 or 2 mm in areas... I have no idea if this matters to my RT. I guess I should ask!
I'm not looking forward to the extra redness and peeling, but I'm happy that I haven't blistered so far, so that's one thing at least.
I've switched to more of a sports-bra type (like the genie bras). Before this--non-underwire bras last week, regular size, and before that, my regular underwire bras.
Oh, and I have a slight dry cough and tickly throat these days. Is that from the RT?
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Darunama, congrats!
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Hi, April - Thanks for the detailed info on your boost plan. I kind of knew about the protons vs. the electrons (cue the heavy music here) but didn't know about the size difference, etc.
My tumor was way deep - all but on the chest wall with only a 1mm margin on that side, so I think the target will be somewhat different in my case than yours. My boost sim. will be next week and it will be interesting to see how it compares to yours. I may ask my RO this week about what to expect...
The tickly throat and cough may be due to radiation if your s/clav nodes are being treated but don't assume that. SweetHope had radiation pneumonitis almost immediately after her RT ended and I know she had a dreadful cough with it, so you should probably mention that to your nurse or RO tomorrow. Maybe check your temperature today and tonight; if it's elevated, speak up!
Take care of yourself, April. Good luck with the boosts!
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Congrats Darunama !
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they re did some things after my sim and after my first nuking. Remember how they had to tape down my left boob so it wasn't in the way. Thank goodness they got it recalculated because I don't think I could handle it or be patient enough to be taped down every day. So I know its a pain and frustrating for the delay but overall be glad they are picky and want it to be perfect
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