Arimidex - Coping with the SE's
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Kam170 and Purple, I will really need to look at this, no one has ever brought it up? Not sure why?? I have heard that low D levels have been a cause of BC but have not heard this from any MD. I do take everyday but just 2000, I wonder if I should double it. I just heard on the news that supplement vitamins can be dangerous and its an ongoing research?? Damn if you do and damn if you dont!
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You can take a lot more of Vit. D than 2,000. I take 10,000 per day now because I am so low.
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Starting Aromasin today, after a failed attempt with femara....very nervous, cross your fingers for me please.
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Susannahw, I feel your pain...waiting day 2 for doctor to call me back on what to do with Anastrozole, as it made my tongue swell up and hurt and caused my knee replacement to swell up...I cannot take Tomoxifin...sooooo...I did read a glass of red wine may work to retard estrogens, I vote for that as medicine...
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Kd6blk, really, you take 10,000?? I will defiantely double mine until I get tested. It doesnt hurt anything right? Sorry about your SE with Anastrozole, how horrible for you. I have aches and pains, especially in my lower back and slight headaches but with Claritin its better. Couldnt deal with Tamox either, awful stuff! I vote for red wine too... I am on a huge search for Soursop, they say it is better then all meds for killing C.
Susannah, good luck to you! You may just do great on it.. I am not that bad, tolerable and living my life so I cant complain to much, but it does stink overall.
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Each person is different when it comes to tolerating vitamin D. One can get too much and have terrible consequences although this is rare. One should take only enough Vitamin D to get levels in the 50 ng/ml range or slightly higher. Blood test are required. One should work with one's doctor.
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Hi all! I mostly lurk nowdays. I do come in and read however, on occasion. I'm on my last month of the five years of Arimidex. I'm really kind of worried about not being on anything, but figure, what the heck. So, after the end of October, I'll be finished. My side effects were hard to discern, as I already have Lupus/Fibromyalgia, so I never really knew if the pain and stiffness I had was from that, or from the Arimidex. Other than that, I don't think I had any side effects from it. Hoping that those who are having problems with it, can figure out how to feel better. My Vit D by the way, was way low, 19, and my Rhuematologist put me on 2000 mg daily. So, I will find out next month where it's at now...it's been about three months at that level.
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Gracie, I would be so surprised it you are much higher than 19 with that low a dose. My doctor in Boston (where I used to live) gave me the perscription megadose and even with that I never got more than about 20 to 21. Since moving to TX I am up to 29, but that movie someone posted was good. This doctor, not a quack, suggested that the lower limits should more be 60 and high limit 100 to 120. My 10,000 units is one pill. It is considered well in the norm of safety to anyone in the know. All the scare of toxicity is only for when you reach your top limits and pretty hard to do. For the elimination of cancer we all need to get it up. Most doctors are very clueless on how to treat it or how important it is for all kinds of level on health. Scroll back and find that Vit. D bit someone posted..it will really open your eyes.
As for my reaction to Anastrozole, I have to see the doctor tomorrow about what to do. I cannot take Tomox., the other pills are related to Anastrozole and one other that is steroid related and I cannot afford the pounds...so what to do? I have no idea.
Lisa
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Gracie--I've been off arimidex for a few weeks now, and am still feeling a bit odd to not be doing anything. BUT--my arthritis pain in my knees is getting better. Hot flashes are tapering off nicely. Now if I can just figure out why I am so tired all the time I'd be doing well! But I still feel odd about not being in the oncology system any more (my MO doesn't see early stage BC women after the 5 years of estrogen blocking are done).
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I just feel the same as always. Thank goodness, my onc. does keep me in the system. He didn't want to see me for a year, but I sniveled so much, he relented and will see me in 8 months. Sort of hard to lose the 'crutch'.
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Well, I am off my anti-hormonal. I was apparently only taking them as an extra precaution *IF* I did not react...and I do...so...honestly, I will be glad to get back to being me soon as it all wears off...
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I haven't been on the site for awhile. I failed at all of the AIs....all caused high BP, heart palpitations, muscle issues, etc. I'm on Tamoxifen. Not the most effective but the side effects have finally settled down.
My question tho is around Arimidex. My sister had BC several years ago at the same age I was when I was diagnosed with mine last year. She was on Arimidex for 9 years.....not the norm as my oncologist was pretty adamant that 5 years was it. At any rate, she has major osteoporosis and assorted other concerns. Most recently the found elevated gastrins and are putting her through a bunch of tests.
Has anyone else experienced elevated gastrins while or after on Arimidex? Has anyone had issues with pancreatic or stomach tumors during or after Arimidex?
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Bobbimarie, that sounds painful, Im sorry for your sister being at the end and now dealing with that. I know I had some gastric issues when beginning tamox and it was bad but all settled down when taking Arimidex and a daily probiotic.
I have been on Arimidex for one month now and am noticing that I have gained 3 POUNDS!! How can that be, I eat the same as always and excersize. Am I going to keep gaining throughout this med despite what I do??
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B123 - I'm concerned about a possible weight gain too. I've been on Weight Watchers since late August and Aromasin since early August. I was losing fine until early September, but now am going the opposite direction despite staying within my points. This has never happenned to me before. A friend was on Tamoxifen started gaining 3-5 lbs a month...she switched to Arimidex and was fine, so who knows?
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I've heard of the weight gain. I am on WW myself - started in July and have lost 16 lbs. Very slow but that is the best way. I haven't noticed issues with Tamoxifen and weight gain (except my eating more than I thought I was which is why WW is now working). I've been on Tamoxifen since January. With Arimidex, the bone and muscle pain besides the blood pressure issues and pulse issues, I was swelling - retaining fluid. They offered BP meds which are also diuretics....but I am not a pill so I can take a pill person. Now that the pain isn't so great and writing down everything that goes into my mouth and tracking my exercise has helped immensely. What I remember and what I actually did are two different things (kind of like I heard what I wanted to hear). I hope it all works out for you.
When I saw my oncologist at Mayo a few weeks ago, she said that weight loss was very important - of course I had heard the stats that body fat generates estrogen. While the meds are doing everything they can to eliminate estrogen, body fat is diminishing its effects.
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As an aside, I am noticing my body being a little different - my waist is not shrinking as fast as my hips and abdoment and other areas. It feels like my midsection is becoming more straight than having a 'waist'. I'm guessing that is the lack of estrogen causing that.
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I've been on Ananstrozole since April, and my weight was fine until recently-I've gained 4 lbs in the last month!
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me too...been on Arimidex for 9 months now...weight is slowly creeping up!
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Unfortunately it is listed as a SW to almost if not all AL"s
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oops I meant SE
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On my arimidex holiday... End of week one - only get two... Still have migraine, but it is far more bearable... Honestly, even though I have about 20 ugly side effects still, my brain and body LOVES this holiday... May just take a holiday evy few months until its over.... Glad I'm not the only one with bad se's my onc treats me like I'm crazy when I bring them up... Sorry we all have to suffer to get better :-(
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No wonder I've been more hungry lately. I'd have a light lunch...a small turkey sandwich, and 5 or 6 dried prunes, and an hour or two later I'm hungry again.
But today, since reading these last few posts, I've made myself wait to eat again.
I had breakfast..crunchy peanut butter on wheat toast with coffee at 7:45 am. Now, it's almost 2 pm and I haven't had lunch yet. I guess I'll give myself permission to have a turkey & cheese on French bread.
Blessings
Paula0 -
This is crazy.. then how do we eat well and keep the weight down. Its not creeping up because of eating (in my case) but just from the pill. I will try to watch what I eat and how much and see if this helps.. Im not a big eater as is, so I dont understand it, now to eat less??
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I have lost weight since starting anastrasole. I may be weird tho, I lost weight when I was pregnant as well. Lost 3 lbs with 1st child and gained 3 with 2nd.
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I know - double edged sword. For me, I was always good about watching what I ate, always ate healthy, went organic after I got BC and increased fruits and veges. However, portions are deceiving - at least they were for me. Even good food can be fattening if you eat too much. And by just reducing the bread/pasta stuff (yep - if I have any bread it is one slice of Ezekiel - no more) I still do organic lasagna (frozen). And cut back on my meat even. I still eat some meat protein but do a whey protein powder on my oatmeal every day. If I have enough protein, I don't doze off in the afternoon (always hard to look your co-workers in the eye after your head is nodding LOL).
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Good evening ladies, just wanted to ask if anyone has ever had this - whenever I have a hot flash it feels like hundreds of needles poking me all over. It's weird but it really hurts. I have the needle feeings followed by the hot flash then back to normal. This just started in the last 2 weeks. I've been on "A" for 4 months now and this is the newest side effect. I have the aches, pain and fatigue and sometimes I just want to sit down and cry but this latest thing makes me wonder if I am going crazy. Hope someone has an answer.
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Tskaiser75-that's exactly what my hot flashes are like-I thought it was just me and didn't know how to explain my hot flashes actually hurt!. I'm guessing it has something to do with nerves as I had the same sensation after my bmx and was told it was the nerves in that area.
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What you eat should be nutrient dense. Thant and exerciseis the only way. A treat is OK as long as you don't overdo it.
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I put together a local team of practitioners who have really helped me with SEs. My nauropath who specializes in breast cancer tested me, both blood work and saliva, and has me on supplements to correct deficiencies. She's really happy with my diet and exercise, so no problem there. The pain in my feet is almost non-existent after three visits with my acupuncturist. He's working on my joint aches, fatigue and hormone balance. I feel 100% better than I did a month ago.
I had a consultation with Dr. David Rosenthal who is the Director for the Center for Integrated Therapies at the Dana-Farber Cancer Institute. He doesn't think I need to change oncologists, though she glazes over when I talk about integrative therapy for side effects. He said all I need from her is the Arimidex and that I can continue with the team of practitioners I have put together. And I can get all these services without driving to Boston all the time. He's going to write her a letter though. Can't wait to see what her reaction is to that!
He also said I was well on my way to doing what I need to do, but that I just needed to add the "spirtual" component. Meditation, etc. has shown to increase the natural killer cells and bolster our immmune systems. NIH funded studies have proven this. I used to be a faithful meditator so I'm back at it, though it's harder than it was when I was younger. After a 30-year hiatus, I'm back to playing the piano daily too. All good the the mind/body connection.
Here's something that burned me. There was a section in the paper on breast cancer awareness last week. The cancer center I go to, where I see my oncologist, has a survivorship program and all kinds of support services. They refer the Livestrong also. Think my oncologist thought to tell me about these support services? My acupuncturist used to work with cancer patients at my cancer center in Hartford, CT. He says one of the reasons he works elsewhere now is because the oncologists are not good about doing anything other than prescribing meds and more meds for SEs. I have a call into the survivorship program to see what they have to offer me.
I still have the aches in my pelvic area but I had those pre-AI. Most likely arthritis.
Got my Scream Cream too! Can't wait to try that out.
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Finally completed my 5 years of Arimidex. I believe that I had every side effect of Arimidex and of menopause which included but was not limited to: hot flashes every night for 5 years especially after 7 PM, real bone, joint and muscle pain, anxiety, acne, dizziness, vaginal dryness and vaginal atrophy, decreased libido, frozen shoulders (Both), decrease in collagen (skin thinning as in looking like you are 90 instead of 50 years old) and decreased bone density. I just wish that the oncologists would acknowledge the side effects. The AIs are rough stuff. Maybe one day there will be a test to see if they work for every one and if it is worth it.
To all who are still on the AIs, one way that I got through the treatment was to say "I am going to take it just one more week" usually the symptom du jour was then gone and I continued the AI.
Good luck to all of you! Just saying that the SEs are real but you can make it.
PS. Before anyone sends the at least you are alive statement, yes, I am so happy that there is a medication to help us decrease the risk of recurrence. Love to all of you.
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