AUGUST 2009 RADS
Comments
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A few of the posts earlier were about timing of rads & Tamox. This is the story I got...
I asked the Rad-Onc if I should have started on Tamoxifen first (because I was thinking that any cancer cells displaced during my biopsy & surgery could be circulating elsewhere RIGHT NOW in my body & don't we want to get after those quickly?) He said: Tamoxifen has the effect to stop the growth phase of cancer, you do not want to have them in your system DURING radiation because radiation works on the cancer cells that ARE growing.
Obviously other doctors reason differently, so in treating us they seem to be contradicting each other, and they can't both be right. Wonderful.
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Cake - I had a hyster 4 years ago. Too many fibroids, so I had them go ahead and remove ovaries too. Glad I did that now.
I dont think tamox side effects will be too good for someone with Lupus after what I've been reading. I'll talk to Onco tho. Who knows, maybe I won't even notice with all the SE I already have.
They found my her2+ with 1 mm tumor, but maybe they typed it from the DCIS, who knows.
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hey all- Hope everyone is doing well - I wish I could respond to everyone but today I am so tired - it is really the first time I have noticed a major change in my energy level besides the little bit of "lazies" here and there - all day it is all I can do to stay awake!.. No running for me today. UGH - had #25 today. I am having 28 total and then 7 boosts. My question is how anyone faired on the boosts vs. the regular rads. I was thinking they would be easier and quicker than the regular but now I am wondering...
Thanks
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Hiya Lori R (btw - my name is actually Laura R. funny!) I havent had boosts yet, so sorry I'm not sure about your question. But I do wonder why we all have different amounts of boosts and days of rads. I have 33 total rads with only 5 boosts (3 regular left and 5 boosts to go!). Curious.
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Laura and Lori...
I was to have 28 reg then 7 boosts. I had 23 reg and my skin was really getting burned and peeling. They switched to the 7 boosts and then will end with my last 5 regulars. The boosts are real quick...like 30 seconds in just the one area. I had to have sim done again since the angle and everything changes. I was told I would probably do better on the boosts since they do not go as deep into the tissue like the reg. do. My skin is clearing up...hopefully by next Monday it will look great and the final 5 reg. won't mess it up too much again!!
Hope this helps...have a good one.
Chris
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Hi Lori R
I had 24 regular whole breast zaps and am on my last 5 (out of 9 boosts). My energy level really dropped my last week of whole breast zaps and I am still really tired --my energy level has tanked--. The appointment itself for the boost is much faster. They don't have to line you up so particularly as they do with the whole breast (in my case at least) -- the only zap me in one position and they only hit a small area around my scar. I am getting very red on that one spot, but the rest of my skin that was red and blotchy, that is no longer being radiated, looks a lot better.I will be done on Friday! Hang in there everyone.
Helen
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Kawee...I seem to have no side effects with the Herceptin by itself now. When I took it along with my chemo, I had a lot of side effects, but that was because of the chemo. I am tired and have been ever since the beginning of all of this, but now I think it is because of the radiation. I have never heard of Herceptin causing recurrence, I have only heard good things. Even the nurses brag about it everytime I go in for a treatment. I hear that you should not believe everything you read on the internet, there are so many conflicting stories about everything. So definitely ask your onc about it.
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Thanks CC for the info. I know, I read so much on the internet. Don't know what to believe. Anyway, Onco said he was on the fence because of the 1mm, I see him at the end of Oct.
LoriR - They did my sim today, because I start my boosts on Friday. (26 reg and 6 boosts). Breast has more stickers and a big green circle on it, (will it never end?). Anyway Dr. said it shouldn't make me anymore red (I have very little redness) because as Chris said it isn't as hard on your breast and he said it's a different kind of radiation - electrons or something. I forgot already??!! He also said it shouldn't add to my fatigue either. Actually my fatigue has lifted some these last few days, don't know why, maybe just a little less stress knowing it's almost over.
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Cakeisgreat (laura r), Chrisc433, heman and Kawee
Thanks everyone for the info. I feel much better now about getting the boosts - and now realizing I only have three more full breast rads! Gave my mental state a little boost - huh pun intended. Even decided to run today after all but only 30 minutes today -
Chris- I just saw where you are from - I was just up to the Pa. grand canyon two weeks ago - I live south of Harrisburg - small world
Laura - the rad doc. did tell me that he was doing 7 instead of 5 boosts because I had margins that were close (1 mm) so they wanted to give me a couple more just in case
elimar - I too had two different docs tell me 2 different things about tamoxifin but both said I could decide when to start- here is what I decided - I did chemo with herceptin and now herceptin with rads - I am going to wait and do tamox. with herceptin - so not til radsare done. I figured two things at once was enough and not going to try and do three (rads, tamox and hercp). who know what is best???
take care everyone!
Lori
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Hey Everyone, haven`t been able to post lately with computer problems, but now seems to be running ok again!! Will give you an update. Finished Rads on Sept 10th (25 + 5 boosts). At tx 23 started getting skin breakdown under the breast and along lumpectomy scar (lower inner quadrant), This progressively got worse until I really could not even wear a camisole. I was told at the final boost that it would get worse for 2 weeks and have noticed just yesterday that it is not oozing so bad and today hardly at all. I tried to give it as much air as possible, but kinda hard with the location (I had to lay down in the tx position to allow air to it!). It looked and felt like a burn (not sunburn) and stung whenever I moved! Even with the burn cream (silver sulphadiazine) it still stung quite a bit. I was also pretty nauseous for about 3 - 4 days after my last tx. Now the area seems to be healing, but the rest of the treatment area is now peeling. The skin around my nipple was thick and lumpy, but is now peeling off. I still try to rest at some point during the day, but don`t always get a nap in. Things seem to be improving and that is wonderful, cause I would like to get on with my life!! Hope all are doing well and congrats to those who are finishing up! Be Well All!
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Congrats!
And congratulations to all who are finished with rads now. Thanks for being good role models for the ones starting after you did. I knew pretty much what to expect from what everyone was posting on here. I still have a couple weeks left and know I can make it too.
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Lori,
Hope you had a good time at the canyon. We love to camp in that area and hike it every now and then. I too had a close margin so am having 7 boosts instead of 5. They haven't been bad. My other areas have been healing nicely and the rad doc didn't think that my last 4 reg. treatments on those areas should be too much of a problem.
Fatigue is still bad for me even with boosts. By Thurs. afternoon I am wiped out. O.K. Friday AM and then back to washed out by PM. Can't wait till this is all over and I get some of my energy back! These kinders and first graders are kicking my butt!
Take care,
Chris
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Done with regular treatments! Five boosts to go starting tomorrow, hallelujah!
How are you guys all doing
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Me too!!!! Now only 6 boosts left for me!!!!
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me three and now 7 boosts to go!
hip hip horay!
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ack i'm SO itchy right now! LOL
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Me..one boost and 5 reg. to go....next Friday is looking good!!
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First boost went well. I found myself being a liitle anxious and afraid when it first started (have no idea why). Machine was on a liitle longer and was almost touching my breast, but other than that it was pretty much the same. Just think only 5 more. I ordered the tamox from my mail order drug company today. Probably won't start it til a week or two after rad complete. Hope that's okay. I'm going to TRY and take it -- we'll see. Doesn't it seem that when you're postmenopausal, have no ovaries, and only a little ER+ you might be able to get by without it. I have to ask the onco, but we all know what he'll say.
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one boost down for me too! 4 to go. My onc said no prob about taking tomox 2 weeks after rads, btw.
the end is in sight!!! (and NOT in-situ, ha ha!!)
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I had visit with rad doc yesterday. My usual wasn't there so I had a fill in. He has a nutrition center at the hospital. He said that BEFORE starting any drugs to block estrogen, get tested to see how much your body is putting out naturally. I had hyster..ovaries too in 2005. He said that my levels should have been tested prior to meds to see how effective they would be. If I already have very low estrogen, the benefits don't outweight the SE's. He said no one in his family would ever see Arimidex...SE's are terrible.
Now...does he have me confused! I've already been taking Arimidex for about 3 months so I'd have to go off for a few to have test done. Going to talk to onc. and bs again.
Just some info to really cloud the water...
Chris
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Thanks for the info Cake and Chris. That's exactly what I'm going to do, go to my gyn and get my estrogens level checked. I had thought about that, but you cinched it.
Thanks!!!
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wow, I had no idea that you can even test for estrogen levels. Wonder if it is high because my bc is 100% E+, or is it just that E+ people get affected by estrogen level either way, low or high.
There is SO much stuff to learn about this whole bc thing! I was so ignorant 4 months ago. Now when i talk about bc to my "non-bc" friends (lucky stiffs!), I feel like I have a PhD in the darn disease (but stuff like testing Est shows me I would really need to go to school for a PhD, ha ha!)
Thanks for the info! I'm going to put that on my list of questions for my next visit. Kawee and Chris, LMK what your docs say when you ask them.
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Hey all - I bet you alot of you are looking forward to this week being over as much as I am - except my final boost is next Monday so I have another whole weekend.
I didn't know anything about the estrogen levels either - how do you get tested - is it a blood test? Also - anyone know if you are going to come out of chemopause how long does it take? I am sure it is different for everybody but I was just courious if anyone had any ideas
take care
Lori
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Hi, Lori, yes it is a blood test. My sister had one once and they told her she had the estrogen of a 7 year old.
I am so looking forward to Friday. Really the time went by really quick. My breast is just now looking sunburned, so i'm glad I'm in the boost phase. My husband's going with me on Friday and then taking me to lunch to celebrate.
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owww...I'm sunburned and now starting to peel! Here I am bragging about barely turning pink, and the last week has changed all that! Red, sunburned, peeling, ouch.
waaaaaa
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Me, too. I said you could hardly see anything, well now you can. I am especially red, itch and sore under my arm moving onto the side of my breast. I think we're continuing to cook even tho our whole breast is not radiated. At least that's what it seems like. Dr. said to use cortisone on it for the itching.
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When I had my boosts last week I got a nice red square where the rads were hitting. I am back to whole breast this week and hoping for the best. Just keep lots of cream on it and don't peel away the dead skin. Let it sit and help protect the new skin underneath.
Chris
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Today, when I asked the Dr. AGAIN if the boosts were going to burn me more, he said, "well, let me see what you're getting. Yes, it probably will some." Different answer than I got last time. He also said yes to the flu shot. He also told me that the healing process doesn't usually start for a couple of weeks.
Still tired, especially if I do alot the day before, I wake up really tired the next day. Been wiped out today cause my husband is home on the weekends and i don't take time for rest.
Anyway 4 more to go!!!
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Hang in there Kawee, Cake, and Lori...the end is in sight!!
Chris
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Thanks Chris! Two more to go!
Got stitches today for an incision to "ward off more melanoma." When I get moderate abnormal skin cells, out come the drs knife to get rid of them. yippee! more scars!
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