Arimidex - Coping with the SE's
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Cary, Welcome. I just started taking generic Arimidex a month ago. Well, how my husband coaxed me to take was to tell me that if I found the SEs intolerable I always had the option to stop taking. It's just a little pill, don't be scared. The truth is that most will not have side effects. For those that do, most find good ways to manage. That is what I have learned here. For me, so far so good.
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Cary, You can do it. All of my s/e have been tolerable. I am sure yours will be too.
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On Monday, the orthopedist gave me the results of the MRI done on my left wrist. I started having pain in the thumb area of the wrist shortly after I began taking Arimidex and noticed a hard lump there a few months later. Like I expected, it is DeQuervain's tendonitis. He gave me a cortisone shot in the wrist and I am feeling much better. The best news was that the lump on my wrist was nothing serious. Lumps scare me after a BC diagnosis.
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Cary
You may want to get a bone density test. As long as your bones are good, most of the SEs from arimidex are not all that serious ... though they can certainly be bothersome.
I'm not currently on it, but I have gone thru meno and so I know that menopause symptoms are no fun, but certainly do-able.
I hope the bones are good . If so, just follow your Drs advice on VITD3 or CA. , diet etc ... and I have a feeling you will be fine. If you have a serious issue with the bones, then you may hev a more difficult decision. Stay informed.
Good luck to you!
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purple...I see you are ER+does your treatment include Arimidex in the future? I went thru menopause eons ago and I find the SEs from Arimidex are nothing like that. For me there were no hot flashes or night sweat but bone and joint aches. Some days are better than others but so far, tolerable. I have yet to get my bone density test...see the GP for a referral next week. Also will get my Vit D checked (other blood work was OK). Am due for my mammo too.
Cary...I am into my 5th month..it's just this month that the SEs kicked in but as everyone says, they are tolerable. I don't take any pain meds...no need so far.
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I was reading an article yesterday in one of my horse magazines about joint pain and arthritis supplements for horses and what some of the ingredients in them are supposed to do. The article mentioned several different ingredients including boswella (also called frankensense) and devil's claw as being ingredients that help ease arthritis immflammation and pain. I don't know much about herbal ingredients except that some can be harmful. Has anyone tried to these to help with the pain of Arimidex? Does anyone know enough about herbals to know if they are even safe to take?
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Welcome Cary-hope your AI journey is an easy one.
Cowgal- the problem I see with herbals is they are not regulated by the FDA (or any other group)so you really don't know what you're getting regardless of what it says on the bottle.
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Boswellia has little research in humans as yet. In animals it does decrease inflammation. Large doses can be lethal, 400mg three times a day is the recommended dose. It is not known how it works or if it interacts with other drugs yet.
Devils Claw is used for imflammation, to increase appetite, allergies, heartburn, stomach upset. It causes uterine contraction, is contraindicated in pregnancy, peptic ulcer, duodenal ulcer disease, gall bladder disease. Side effects are nause, vomiting, allergic reaction. This herb should not be used with drugs used to regulate heart beat (digoxin, amiodorone, betapce, cardizem, diltiazem, flecanide, norpace, pacerone, quinidine, sotolol). At high doses the heart rate will slow down. How it works isn't known. Dosing is variable depending on preparation (liquid, capsule, dired powder). There is human research supporting the use of this herb.
From Mosby's Handbook of herbs & Natural Supplements, 2nd edition.
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Thanks! I don't think I even want to give any of that to my horses!
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Hi, Cary - welcome. Ditto the suggestion to get a bone density test as a base line. There are wonderful suggestions on this thread for just about any/every SE you might, but probably won't, get.
Remember - it's ALL worth it - we're still here enjoying life - I'm sure there are may women who wish they had the option of taking an AI to prevent a reoccurance. Good luck with the little white pill
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Hi schatzi
You asked:"does your treatment include Arimidex in the future? I
THAT is the million dollar question. I would love to be on arimidex, but I am very, very hesitant because I have had 3 severe breaks and am on the verge of osteoporisis at my age ( 54) Even my MO reluctantly admits that the odds of me developing osteoporosis on arimdex , at this point, are greater than my odds of recurrence.
Of course we are not comparing apples to apples, but osteoporosis at this 'young ' age can be disabling.
It's a tough decision, and the one SE that might keep me off of it.
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purple...I share your concerns and understand your worries. I will know more after my bone density test. Did your MO tell you your percentage of ER+? I would think that might make a difference on how you feel about whether to chance it or not! I would have rather taken Tamoxifen because bone loss is not a SE but for me blood clots are a concern, and they are a SE of Tamoxifen as it was explained to me by my MO and the hematologist. If it isn't one thing...it's another! LOL
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percentage of ER+?
Nope ...they won't test and this is MGH!
Unfortunately I have the bone loss, and I am at high risk of bloot clots as well. (UGH)
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Purple- I understand your concern about bones. My recent Dexa scan, my baseline before starting AI , shows that I now have osteoporosis. I had osteopenia 3 years ago. It did not surprise me. My mother was dx when she was my age. We are both active, well nourished, non smokers so I believe there is a strong genetic component. She went on a biphosphonate and continues to be active and mobile at age 86. My MO believes that the risks associated with osteoporosis from Ai are not as dangerous as the risks of uterine hyperplasia and blood clots from Tamoxifen. (AIs carry less risk for clots and hyperplasia). My grandmother died of uterine cancer, so don't want to go there. My reading and research confirms that AIs are considered safer and more effective for post menopausal women. Not happy to have to make these choices but feel glad i have choices and feel confident that my osteoporosis can be managed medically just as my risk of breast cancer can. I have not had fractures as you have and I am assuming that your fractures were deemed due to bone fragility and not just a result of trauma, right? Anyway, with or without anastrosole you will likely have to make a decision about how to manage osteoporosis.
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purple..I assume they test the cells to find out if they are ER+ or ER-. How else would they know? If I understood my MO correctly, he said my ER was just 1.5% positive. He talks so fast, I am sure I miss alot of what he says. I have a lot of questions when I see him in October. I have so many things to ask after being on this forum..no wonder he told me to stay off the cancer sites ( you learn so many interesting things) and he hates when I question him. LOL
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dobie "She went on a biphosphonate and continues to be active and mobile at age 86. "
Wow! That is great!
I presume she has not had it since my age ( 30 yrs)
I am concerned about a hip fx more than anything else I suppose.No, I was in my 40s when I had a very severe shoulder fx /avulsion which also tore the R cuff off the bone. Took over a year to get arm mobility back. Fuinctional now, but not perfect. I'll take it - no complaints.
A few yrs later I broke my knee. Very severe injury. Knocked me out of the game for quite awhile. Still have issues in knee and shoulder.
Third break was an elbow from very minor fall. Didn't amt to much.
I have been trying to manage the osteopenia. I was initially on calcitonin aka miacalcin for a few yrs . which proved ineffective. Later, I was on fosomax which I could not tolerate. Then they put me on actonel which later had TV commercials warning of sudden unexplained femur breaks. I called my DR and asked if it was true and he said yes...not always the safest drugs. I went off that one after 2 yrs. During all this time my scans worsened - never showed a tad of improvement.I faithfully take my CA and D3. Exercised when I could , but the knee break and shoulder knocked me way out for a long time.
Still can't do too much due to other health issues, but make my attempts daily. Certainly cannot do high impact with these thin bones.
None of the choices seem to be good when you have these underlying issues.It is not crazy to think that perhaps the *Best* choice in this case, is NOT to take the tamox or the arimidex . It has me up at night. I cannot very well just ' give it a try', end up with osteoporosis or a broken hip and say "Oooops", I tried! My BC is low risk , relatively speaking ( luminal A) and my risk for osteoporosis and blood clots is high.
All the breaks were on the left side ..same as the BC.
That's my story ...sticking to it .
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schatzi "are ER+ or ER-. How else would they know? If I understood my MO correctly, he said my ER was just 1.5% positive. "
This was done at biopsy ... long before LX.I asked my BS RO and MO ALL about the percentage. All 3, all from MGH said they do NOT quantify it, and will not test.
I asked for oncotype testing and was told it was not done at my stage and grade-= period.A frustrating story, but an accurate one nonethelss. I even called the Genomics lab! They thought I was wrong and said MGH orders all the time. Then the man on the phone because curious and looked at some files. He came back to the phone and said he never noticed it , but not one case was stage 1 grade 1 for MGH. he was convinced I was correct in what I was telling him. He was surprised. It feels worse than fighting City Hall. I dont quite get it, but I am NOT wrong. You must trust me on this one.
I finally called MGH one day and said I want my ki-67. I have to have it to see if I can skip the rads. My BS was out on vaca and so her asst. PA did order it.
Thats all I got.
I also asked my endo dr. about testing hormones. She said no.0 -
purple32,
Maybe you could switch your care to another place like, Dana Farber. Just a thought.
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I dunno'. I don't even live in Boston. MGH is tough enough, and to start all over again just seems like more of a battle.
To be honest, MGH is offering the ' normal protocol' for BC...rrads and arimidex ( or tamox) It's my own underlying health isuses that are the real problems, not so much MGH.
I certainly dont think DF would disagree with their suggestions.
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purple32: I'd strongly advise seeking a second opinion from outside the MGH network. Here in the Bay Area these are standard tests (UCSF, Alta Bates, Kaiser) and they provide a wealth of information. The oncotype score will largely reflect many of the numbers you already have, but it is a very useful tool nonetheless. The Ki-67 is an important number, glad you asked for it. My oncotype score was borderline low/medium; I'd pretty much talked myself out of going through chemo, but my surgeon had participated in a Ki-67 trial which showed a strong correlation between a high Ki-67 (which I had) and recurrence. That was the kicker, and convinced me to go through chemo, which I was terrified of. Luckily, the night I decided I needed chemo, I discovered Penguin Cold Caps to prevent hair loss from chemo. I was the first PCC user at my cancer center, and retained my hair and had very few SEs going through chemo.
I'm at month 7 of anastrozole; the only SE I've had was bone aches, within the first 2 weeks. Discovering the use of claritin alleviated that completely; I've had no other SEs from it. For those of you about to start, try not to read ahead too much! There is a menu of potential SEs from any drug or treatment, but it is just that: a menu and you may or may not get any of these SEs and in varying degrees. Everybody is different. Start, and be honest with your doctor about any SEs you develop but try not to psyche yourself out! [I remember reading the tamoxifen list before I was about to start, and it terrified me to the point where I didn't take it for about a month. I finally took it because somebody posted 'I've been on tamoxifen for 2 years and haven't had any SEs yet...' I am forever grateful to that person!]
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sorry, I thought MGH was Mass General Hosp. in downtown Boston.
As far as Arimidex or Femara goes...does anyone know if you can take less than the usual dose and would less still work against the bc but maybe save your bones more?
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Thanks sebm9
I pretty much closed the door on going outside of MGH , but I guess I might re-consider it...worth a thought. Would a place like Dana Farber have to ask for my breast tissue then? I imagine they would and wonder how long MGH would have it.
As for "I'm at month 7 of anastrozole; the only SE I've had was bone aches, within ..."
I am curious . Did you have a bone density test ? Do you have any ' bone issues?" Thanks for any info. I appreciate it.
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Just thought I'd put in my 2 cents on anastrozole. I've been taking it for 2 weeks now with no side effects at all. I had a DEXA scan prior to starting on it, and I have osteopenia, but no bone aches with the drug so far ... so good!
I am now on a walking regimen and hope to hold steady on the osteopenia, if not reduce it.
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sorry, I thought MGH was Mass General Hosp. in downtown Boston.
YES!
Yes, it is. I , however, live in Spfld.
That actually was my original question- I wonder what would happen with a reduced dose.THX!
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Purple- Sounds like you have put a lot of thought into your care and have just about decided not to take the hormone therapy. In your case, it seems a reasonable choice. I wish you confidence and peace with your decision. I made that decision 5 years ago and still feel it was the best decision for me at that time. If I had a crystal ball and knew at that time I would have a reocurrance, would I have decided differently? Maybe yes, maybe no, but what's the point of dwelling on that. Onward and upward and no looking back.
Edited to add- this dosage thing had me curious. How did they determine that 1 mg is THE dose? Found this on the AstraZeneca site which discusses that different doses were studied. What I get from this is that the 1 mg dose is what they determined got the job done best. Will a different dose work better in my specific body. They didn't study ME. Im almost 6 ft tall and weigh 180 , maybe i even need more! Who knows? I'll just stick with 1 mg. Here is info:
Pharmacodynamics Effect on Estradiol Mean serum concentrations of estradiol were evaluated in multiple daily dosing trials with 0.5, 1, 3, 5, and 10 mg of ARIMIDEX in postmenopausal women with advanced breast cancer. Clinically significant suppression of serum estradiol was seen with all doses. Doses of 1 mg and higher resulted in suppression of mean serum concentrations of estradiol to the lower limit of detection (3.7 pmol/L). The recommended daily dose, ARIMIDEX 1 mg, reduced estradiol by approximately 70% within 24 hours and by approximately 80% after 14 days of daily dosing. Suppression of serum estradiol was maintained for up to 6 days after cessation of daily dosing with ARIMIDEX 1 mg. /p>
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Wow, that is interesting that within 24 hrs 70% is reduced.
I don't post much because I am on other meds to help my lungs and have a hard time telling which med is causing what. The biggest complaint I have is the low to no energy. I'm trying to exercise by going to water aerobics 3x a week, but I am just wiped out from it and have to take a nap when I get home. Since all the lung issues and the bc happened about the same time it is confusing my drs and me. I am also treated at MGH. They (PCP and Pulmonary Spec.) think it is some viral infection in my lungs, but my body just does not have the energy to heal. I have to give it time. I'd tell you what I think about that but it would be reported back to the mods for sure.
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I see the Astra Zeneca study was done on women with ADVANCED breast cancer. I wonder what the effect is on those of us with EARLY stage BC? Would the dose be the same? I guess we have a choice...take it or don't! I also wonder what any long term problems it may cause.
Reduction of 80% after 14 days and maintained for 6 days after daily dosing??? Wonder what would happen with a weekly dose? Sure would cut down on the SEs.
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I don't think the pharmaceutical effect, ie estradiol suppression, would be effected by stage of cancer. I suspect that the key to effectiveness is suppression to the " lower limit of detection". Which would acheiive the desired therapeutic effect. That is to starve those nasty BC cells into oblivion.
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THX dobie.
Maca ...did you have rads ? I seem to have forgotten. Was hoping your lungs would be better by now.
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