For Arimidex (Anastrozole) users, new, past, and ongoing
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B123 - With arimidex - 9 out of 100 women will have a recurrance... Without arimidex - 18 out of 100 women will have a recurrance. Oncotype only works with if chemo will help or not AND the recurrance with an AI. It has nothing to do with rads but rads will kill any missed cancer cells that were still in your breast after surgery.
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So I think that means a 50% risk reduction.....
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Yes you are correct Ruthbru
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I am glad I found this thread because I have been on Arimidex for two months and am miserable. I took my last pill this morning. I don't intend to take Arimidex again. I've gone from an energetic active 54-year old to a woman who can hardly move in the morning and has no energy to do anything (a tough problem with 8-year old twins). I constantly have a low-grade headache. I am not a complainer and have been through BMX, chemo, and radiation, with a DIEP scheduled on October 10th. None of that was easy, but each had a foreseeable endpoint well short of five or ten years. I can deal with the hot flashes and the weight gain, but not the overall crushing effect on quality of life. I am drinking every green drink, protein drink, eating very little gluten, etc., to try to forestall the effects, but nothing is working.
I'm looking for a recommendation for a medical oncologist in Northern Virginia, preferably in the Leesburg area. I did a quick search and found 10, but need to select one from the group and would prefer a recommendation. I'll likely switch to tamoxifen, but also need to switch oncologists as part of that process.
If you are one of those many women who don't experience Arimidex side effects, be thankful. I'm crossing my fingers that Tamoxifen will be kinder to me.
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My Onc won't even discuss the options he has in mind until I'm off the arimidex for 6 weeks. I think that is what drives me up the wall.
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Sherryh16 - I got all my percentages from my MO. (I never had the Oncotype test.)
Based on my type and size of cancer, the surgery I chose, and the results of my final pathology report, she is the one who gave me those percentages.
SO - I took my first Anastrozole Wednesday night. Last night I was sitting at the computer, sweating. My first thought was "Curse these hot flashes!!!"
Then I remembered I had just taken a very hot shower, and for some reason, put on my very heavy, fuzzy, winter bathrobe. (And it's still summer here!) DUH!!!!!!
So far, so good......
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GMA and Ruth, I think that is good but I still just dont understand it?? So if the oncotype is only for whether chemo or not, why do we use the number for percentage? Im so confused.. so sorry!! I had BMX, Rads and A1, I thought that counts to your reduction in reaccurances??
NancyJ, sorry for all your pain, I totally understand. The Claritin these lovely ladies recommended worked great but now my stomach is doing a dance!
Blessings.. so glad its working for you so far.. that is funny about the hotflashes!! What was your scores and how did your doc figure that out??
Thanks!
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Someone's onc. told her not to take multi-vitamins.
B123, unfortunately a BX and rads will take of any cancer in the breast area itself. It will do nothing to affect cancer cells that may have already escaped. Even if you are node negative, there is a chance that some (too small to detect with the current technology) are already out there lurking. The lower the stage, the lower the chance. For me, without BOTH chemo and Als, there was a 54% chance of recurrence!!!!! What chemo does, is try to kill any cells out there. If you are estrogen positive what those cells feed on is estrogen, so by shutting down the estrogen, you are shutting down the 'food' source of any still lingering cancer cells...which will hopefully also kill them!! It really is a WAR.
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Jo, I'm not a vegetarian. I have cut out pork and beef, don't drink alcohol and try to limit my sugar and bad fat intake. Once every other month or so, I'll treat myself to a buffalo burger or a grass fed beef burger. I eat lots of nuts and use olive oil. I am mindful of what I put in my yap and have just eliminated most of the empty calories I used to eat. I actually feel great, better than I have in a long, long time, when I'm not on an Rx. My skin cleared up, one of my oldest friends asked me if I'd had a chemical peel, seriously. I haven't been sick once and have eliminated my hayfever allergies that I have suffered with all my life since I started living healthier. I weigh what I weighed in high school and nobody thought I was skinny back then, I just looked like everybody else. I'm working with a Naturopathic Oncologist who monitors my Vit D level. My bone density test was good. What does the Claritin help you with, side effect wise? I don't have any stomach issues, Arimidex just makes me feel crazy and I can't sleep.0
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Jo and Ruthbru, Thank you for that! Sounds a bit scary when you put it all in one lump sum but makes sense! So, I guess Im on the right track then.. As for the multivitamins, Im a little worried myself to take more?? I have never heard of that?
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I think plain multi-vitamins are fine. Most of us need them for overall health.
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My MO told me it was o.k. to take fish oil, calcium, and Vitamin D3, but individually, not in a multi-vitamin.
She wants me to get my nutrition from real food, not supplements.
She especially warned me against taking anti-oxidant supplements, as some recent research has shown that in addition to protecting healthy cells from dying off, they also protect the DNA in cancer cells.
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Picked up a Rx for Trazodone, some Claritin for good measure, and will give this another shot. My Onc's office finally called today, then had the nerve to tell me to call the pharmacy to make sure the fax had been received as "they didn't want me to be without it all weekend". And I thought, really? You left me hanging all week, but you don't want me hanging over the weekend? Fingers crossed!
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Mom2jj, I persevered on arimidex for 3 years and suffered all the side effects and felt I was an old lady (im 46 now). A few months ago I changed from a normal solid calcium/caltrate pill to green calcium liquid capsules and also take a probiotic. Im not sure if either of them or the combination together, but my s/e's hae improved so dramatically I keep telling everyone about it lol. I could stay on arimidex for the rest of my life now if I had to because I feel like I did pre cancer now. I felt the huge improvement within a few days of taking the supplements btw.
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Ruthbru - Congratulations on finishing your Arimidex!
Linda1966 - What is the name of the liquid calcium pill you are taking and does it contain shellfish? Also, what proiotic are you taking?
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http://www.greencalcium.com.au/ is the website that has all the info on the green calcium that I take in its liquid capsule form. It says no crushed coral or oyster shell and I would assume its available around the world under various labels or that if you check your local health food stores specifically mentioning what it is, they can help you.
The probiotic im taking is Nourishing Flora http://www.totallynatural.com.au/nourishing-flora.html which was also just at my local health food store. Both were given to me by a naturopath who I had a consultation with.
Not sure if its okay to put these names and sites here or not, so if this is deleted, just pm me and I can give you them again. Hope this helps
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Ok..so I know this has probably been covered on here already, but I've been reading this thread for over an hour, and I still have questions.
I'm expecting my 1st mail delivery of arimidex (1st time taking it too) on Monday. I've taken an OTC sleep medicine for at least 12 years. I know...I'm an OTC junky. I also take melatonin. If I can get 6 good hours of sleep, I'm happy. This is the Se that most concerns me, though I know not everyone has SEs. I'm assuming, I'd be less apt to have insomnia if I take the arimidex in the morning. Is that right?
I do need to move a lot more, and I have plenty of fat to get rid of, so I'm getting on the gazelle. I walk with a cane, which I hate, so walking literally wears me out. It's the cane, not the pain. I think I might get less tired with a walker.
I already take calcium, potassium, & magnesium to avoid leg cramps. Take D3 because mine was low in April, B12 for pernicious anemia, low dose aspirin, and fish oil.
I didn't have hot flashes during menopause 12 years ago, so I'm hopeful that I don't get them now. Actually, I would not have known about the menopause at all except that my periods stopped all at once. I was as regular as clock work. Every 28 day, lasted for 4 days and done. I was a few days late one month so my doc gave me a blood test, and told me I was done. I had slid into home base!
What else do I need to know going in? All comments appreciated.
Blessings
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JO-5 - I started peri-menopause when I was 46. Didn't have many hot flashes, but I sure had those "freeze flashes"!!!! I just couldn't get warm - sometimes I'd wake up in the middle of the night to take boiling hot showers. I'd sleep with the electric blanket on high, even in the summer!
My OB-GYN briefly put me on birth control pills for heavy bleeding due to fibroids. (I had already been on them from age 17 to age 44.) Then I abruptly stopped taking them, and menopause hit me full force. I had not only classic hot flashes every 20 minutes, but horrific night sweats every 45 minutes. The worst part of it was losing my short-term memory. In conversations, I couldn't even finish a sentence because I couldn't remember what I had been talking about.
So at age 47 I started hormone replacement therapy (HRT), which gave me my life back. I knew the risks, but my QOL was more important. Then I had a complete hysterectomy at age 48.
I continued HRT (estrogen only) for almost ten years, and when I stopped completely, I had no menopausal symptoms whatsoever. I made it through. (And yes, "they" are right when they say that menopause is really about a ten year process.)
I was 60 when I was dx'd with BC, 61 when I had my BMX, and will be 62 in two months. In the back of my head, I'm thinking that because menopause and I had such a rocky relationship in the beginning, but worked it out, I will be o.k. on the Anastrozole.
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I started taking anastrozole in March of this past year. No major side effects but my hair is really thinning. It will stop for a while and then start. My oncologist told me to take biotin which does seem to help. Otherwise there's not much to do about it. It may stop or continue the whole 5 years she said. Hopefully it won't last the whole 5 years and I feel lucky that so far that is the only side effect. I get some joint aches, but they started years ago. My primary care doctor told me about using CoQ10 which I guess does seem to help.
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Jo, good question, I would love the answer too.. I dont know that many really have that answer?
Cheryla, I am sorry for the SE your expeiencing, Hair thinning?? Is it really bad? Now Im a bit worried to keep taking this stuff. I have been taking Bioten for about 9 months now and I do feel like it has made a difference but I hope I dont wake up to find my hair falling out! That scares me... What is CoQ10?
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Try Nioxin shampoo and conditioner. I didn't need it for Arimidex, but that is what my hairdresser advised so that my hair would come back nice after chemo. You can buy it at any beauty salon.
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YOu may also be able to find Nioxin at TJ MAxx a lot cheaper, as well as Ulta.
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I just read an article that said that newer studies have shown that taking multiple is ok as long as the vitamin is not more than 100% of the daily requirements; that higher levels can stimulate cancer cells. I looked at one today at the store and for one of the vitamins in it was 3335% of the daily requirement. Really, who needs that much of anything? That is crazy.
I too have heard the Oncotype is just for chemo, but my MO also used it for my recurrence rate. The thing I have found about studies is that some test results on which they base their recommendations include deaths of any sort that occur during studies. So if you are in a test and walk outside and get hit by a bus, you go down as a death. Conversely, if you live 61 months and die of cancer, you're listed as a survivor because you made it past the 5 year (60 mo) mark. There is no consistancy in the results for tests on meds or cancer in genreral. The protocol can be very different. Some show absolute risk of CA recurrence as low as 3% without meds. Makes it hard to figure out the true risk and how much is a scare factor.
Biotin has been working great for me, btw. My hair is growing in great. My sister likes Bosley shampoo and conditioner for thinning hair.
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I have been using Bosley. It was recommended to me over Nioxen.
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My bs mentioned hair loss as one of the main reasons women stop AIs.
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The lack of memory, massive bruising, insomnia and horrendous joint pain made me stop. The hair loss was the least of my complaints.
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So Bosley or Nioxin are good to keep hair from thinning and actuallly make it thicker? Is it really in TJ Maxx??
Mini1, Im a bit confused by that? The oncs say different things about the Onco scoring and people say another. What is the point of it then? My onc told me I am at low risk and the oncs base the treatment according to the Onco Scoring (most times). So, basically we have about 5 years and from there who knows?? That is a bit scary... What are we fighting for then? sigh...
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Hi again.. Just looked up Nioxin and Bosley, it shows that Bosley has Soy ingred in it, is that safe to use on us ER+ gals?? Thanks everyone!!
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B123 - I'm not sure if the limited amount of time the shampoo would be on the head would make a diffference or not. I guess you'd have to check with your MO. My sis doesn't have BC, just thinning hair, so I'm sure it's never crossed mind. I guess its probably not any worse than the chemical filled shampoo we use now.
I'm right at 18 for my oncotype score which is the highest of the low and the lowest of the intermediate. Why it's not 1-17 and 18-37,or 1-18 and 19 to 37, I have no idea, but it's 18 and in both categories. All I know is what the doc says. I do notice on various threads that diffferent docs and cancer centers recommend different things; especially creams and such for radiation. As for the rest, I think it's a big genetic crapshoot. I have had 80+ year old women tell me that they had cancer in their 40's or 50's had a mastectomy and never had another treament and they are fine. Others have to be more aggressive. Yet we're supposed to either follow blindly or somehow figure out what's best for us when most of the info out there is conflicting. It's very confusing.
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Wondering if someone could direct me to link that showed which over the counter products interfere with how arimidex is supposed to work. I thought I had seen it here somewhere, but now can't find it. Got the links on the foods to eat/not eat, but wondering about which other items should be avoided. Thanks!
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