Fall 2012 Rads girls......come on in!
Comments
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Terri--that is great info on the bramates--had never heard of them before. One of my techs is Canadian and I asked him why we don't use the Canadian protocol here and he told me it was mainly driven by money. The longer protocols put more money in the pockets of the hospitals and doctors. When I saw my doctor charges for those useless once a week meeting it was a joke. There were times when he was in there for 2 minutes max (I used to time it on my cell phone because it annoyed me so much). Really glad you have the shorter protocol!!
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Junif,
I had asked about the Canadian when I first met with the RO but she politely did not steer me toward it or even discuss it much. I am not sure if she has 'done' a lot of them but I was strong about wanting to have the shortest therapy I could have as long as it was going to reduce the recurrence the same and of course studies have shown that Canadian is just an effective. What is it about the USA that we don't TRUST our northern neighbors to provide safe, effective and cost saving methods and FOLLOW them? They do cutting edge procedures and have cheaper meds and low cost health care. I have Canadian friend who had BC and she was stunned that I had not been offered the Can. Protocol. I think we are whimps when it comes to change in this country.
I am sure you are correct about the money. I saw my RO for a short consultation after my initial visit with her and it cost over $250 for 10 minutes...JEEZ. Thank goodness for Medicare and my retiree supplemental. I cannot even imagine how much the entire Rads therapy will cost and I would love to know 6 wk versus 3 week. I am going to ask the billilng/insurance person and see what she will tell me. I did find this even though its a few years old. "Early-stage breast cancer patients who receive a more intensive course of radiation to their whole breast over three weeks is as effective as the standard, less intensive five-week whole breast radiation and offers patients more convenience at a lower cost, thereby providing a better quality of life, according to a randomized, long-term study presented September 22, 2008, in the plenary session at the American Society for Therapeutic Radiology and Oncology's 50th Annual Meeting in Boston. The cost of this shorter treatment, called accelerated hypofractionated whole breast irradiation, is two-thirds of the cost of the standard whole breast radiation. It is also less expensive then other new approaches such as partial breast irradiation."
Onward!
Terri -
HI gang,
When I did rads, the RO asked if I would be interested in doing a clinical trial now going on for the traditional vs shorter term rads used in Canada. I agreed so was randomly put in computer and got the traditional 6 week arm...but am still in clinical trial to compare the two. Think you had to have one intermediate risk factor and be over 50 etc...mine was Onco score of 26 that allowed me to be in. My RO feels that the USA will move over to the shorter protocol...less time, less angst with the shorter time for us, and possibly similar results. I only wondered if skin reaction may be more intense since the rads amount is same but given over shorter amount of time.
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Terri: I don't have an answer for your question. I met with my MO last Tuesday and got the Oncotype score, (16) and she gave me the script for Tamoxifen right then and when I asked when to start, she said 'tonight'. She knows I am having rads as she said that she would email my RO that I was good to go on rads.
I will be asking that question tomorrow at my sims appointment. Boy, and I thought I had read all there was to read...
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Aruba,
I don't know what the Onco score is and not sure how I qualified. I am an othewise healthy 66 and had early stage zero DCIS .6cm and the lumpectomy had wide margins and no calcifications are left after the biopsy. I scored almost perfectly on the Van Nuys scale which meant that even without radiation my chance of recurrence was very low but I decided to have the Rads anyway. I have some of the BC risk factors such as age, early start of menstruation, dense breasts, HRT but no history of cancer in family.
I was never told about clinical trials so I have to assume that here in Virginia they have already done that or have concluded that the protocol is safe and effective from clinical studies elsewhere. They told me that I would not have as many effects on the breast with the shorter protocol and the breast would get a bit red but not as severe as with the 6 wk protocol and that the fatigue would start to set in just as I was finishing the protocol. I was content with those factors.
We all react differently of course to any treatment
Terri
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Terri, you really are low risk and glad that you have this option. I would have done it too and thus the trial felt good as being part of something to help others down the road. I had no fatigue and had some peeling underarm and the underboob at the end...but all healed up quickly and now 3 weeks done, can barely tell skin difference at all..and scar from lumpectomy barely noticeable now which I never expected but am happy. Now starting on Arimidex ..as I am 53 and post menapause..so will see what SE I get to deal with next.
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Virginia: I have noticed a lack of appetite when I take a bite of food. Like it doesn't appeal to me. It isn't like the chemo loss of taste just a not wanting it kind of thing. And today is Thanksgiving...well I could use to lose a couple of pounds.
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I have a question about the shorter Canadian protocol. I thought it was 3 weeks but upon closer exam of my schedule it shows 4 weeks. I will ask RO next time I see her but wondered if the extra 5 days was the Boost. Anyone have the Canadian with the extra week?
Terri
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Terri - did my first week of the Canadian protocol -- I am having boosts done every Friday. Guess each center does it differently. so far so good.. a little tired today (had tx and boost plus worked today as well) So I am guessing it all has to do with the fatigue. Diane
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Hi ladies, thought I'd report on my radiated skin. Last nuking was November 14..... sunburnt skin gone and now just slightly tanned... moisturize, moisturize and moisturize more.
Healing hugs to all xx
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That's great Tazzy! How soon did your skin start feeling better? I'm moisturing like crazy, have 7 more to go, but feel like I've got a bad sunburn inside and out. I'll be glad when this is over!
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Andrea: I was exactly the same - worst seemed to be a week to 10 days before final nuking... that for me was definitely the worst time. Last week was when I noticed it getting better. So I would gauge about 10 days after final one it hit its peak. I am still moisturizing like crazy.
Hang in there rad girls !
Hugs and love xxx
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I'm on day 15 of 33 and started getting red in the arm pit and surrounding area. Lotioning twice a day, will it go away or on get worse? Can't wait until December 27th
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Thanks Tazzy. So, I can expect to feel worse before it gets better? Ugh, I cannot wait for this BC ride to be over!
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Aint that the truth with this crap... all gets worse before it gets better. But it does get better.
Grace: I would recommend lotioning more than twice a day. When you think you have moisturized enough, moisturise more. Are you using the saline soaks... they are a godsend. Also I used an aloe plant once a day. About half way through my tx I was moisturizing at least 4-5 times a day, the saline soaks 4 times a day.
Hugs xx
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Andrea, Tazzy is right regarding skin effects however the unfortunate part is that given your te's you'll probably have lots of tightness for a while. My last treatment was about 6 weeks ago and I still experience tightness to the point of being uncomfortable at times. I even feel it sometimes on the nonradiated side that also has a te. My PS said that its probably from swelling and/or tightening of the overlying muscles. Hopefully this won't happen to you but giving you a heads up.
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Grace, I agree...moisturize as much as possible even after treatment ends. It will help the skin recover faster.
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I am still moisturizing at least 3 times per day and using a hydrocortizone cream my RO prescribed before I go to bed. Until my skin looks anything like back to normal I will keep that up. Still plenty of fluids too... keeps the body and therefore the skin hydrated.
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I am noticing tightness with the TEs already. I've been doing stretching exercises and hope it won't get too bad. Somedays it feels like even though I stretch, everything remains tight. Have you found anything that helps it, or is it just one of those things that resolves with time?
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I don't know of anything and my PS said that there's nothing I can do besides stretching and moisturizing. He said of course once the te's are removed then I'll get relief but for me that's another 4 months away. Unfortunately can't say it will resolve with time because that particular se is just getting worse so far.
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Hi Ladies. I finished up last Tuesday!! Already seeing some improvement in the skin. With about ten treatments left the RO recomended switching to using Aquafor. It worked great but very, very greasy. When I got my discharge instruction the RO said he would not see me for a year.....but of course to call if any issues. So now I am just waiting a couple weeks to then start Arimedex.
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Patti, congratulations! It's wonderful that you're done! What a great feeling that must be!
llr010200, the tightness won't go away till your exchange? That's disappointing! I'm still a long way out from having these turtle shells removed! Okay, I'll keep on stretching and mosturizing!
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Outdamnedspot: my RO told me that you can take tamoxifen during ads but typically they don't so that if you se they know if it is from the rads or tamoxifen.
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Loving, I am taking tamoxifen during rads because I took it earlier when I needed to take a break from chemo due to a bad drug reaction. I was told by MO that it was not always done, but ok because they already knew I tolerated tamoxifen ok.
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Way to go Patti, kick back and heal. I cant wait to see what its like to be done.
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I finished my rads on Nov . 6. The skin is healing well, but my boob is still quite warm to the touch. Did anybody else experience this? Does it cool off EVER?
Also, I'm still kinda tired some days. Not ridiculously tired, but I need to manage my energy level or I poop out quickly. They did not give me chemo, so this is rads only.
Thoughts?
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I start rads tomorrow and actually feeling pissed off about just because I'm ready to be done with treatment altogether. I'm sure I'll be better once I get started but tonight, just pissed off.
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Hi Kimby, my radiated breast tissue was very tender for about 4 weeks after rads were done. It felt hard and warm. Things are starting to get back to normal now and my last rad on that breast was October 28 (or so). Everyone is different.
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Hi Kim, My skin is not hot anymore, but still a bit tender...the thought of a mammo I'll have in Jan sounds painful at the moment! I never really felt tired during treatment. I started Arimidex mid Mid Nov after last rad on 10/31. Think I am still on the what if bandwagon a bit..go back to RO for skin check mid Dec..then see the BS and MO end of Jan for 3 month after rad mamm and check. Miss seeing your posts around..I check in on the 2013 survivors board etc..but now read more than post as active treatment is done. Hope everyone is doing well!
Lifeonitsside...hang in there..it is like groundhogs day but does end. There is a Winter Rads group going...if you have not yet..check it out as many are starting rads right along with you here shortly.
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Aruba - I am in that group and thought I had posted there! Thanks for the encouragement.
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