Arimidex - Coping with the SE's
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Claire, Ruth, Rocket, and Moomflwr... Thanks for answering. I am starting tomorrow and will be done in 10 years! My friend told me to get Arimidex original, not generic, so I asked my doc to send in new Rx. Do you think it matters? As of late, I am so tired of researching things that I just do what I am told, lol!
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patty-found out that i have a common parasite!! Soo,the plan is to get a phone follow-up in a week to see how I'm feeling. I'm pretty sure I need that colonoscopy because of the discomfort. I'll let you know. Thanks women for your input on this pesky med!
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Nisa, when I first started there was no generic. Once it came out, I switched to it and, for me, I couldn't tell the difference except in the pocketbook because it was a lot cheaper (like in hundreds of dollars cheaper!). I'd try the generic first.....
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pattithenurse - what kind of parasite do you have? how do they treat it...
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I just wanted to share that I started the Arimidex today. I felt a little emotional about it. I would have liked to feel stronger from post-chemo but it was time.
My bone density came back borderline for osteoporosis. Onco wanted to prescribe a med. I said I will I first ask my BC-sisters! So are there any suggestions for more natural, non-prescription, approaches to my new bone problem? Who would have thought?! Just 2 years ago I fell down the stairs - in high heels and a laptop in hand. I was bruised for weeks but no broken bones. I was sure that was a sign that I had strong bones... but I was wrong!0 -
Running and skiing to hammer those sorry bones into shape! Plus weights.
I was thrilled when Arimidex went generic. Difference between $135/month vs $13 for three months. Thats a lot of cases of good wine.
Off to bed as a marathon work day yesterday with more to come tomorrow. - Claire
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Claire - Running and weights sound doable. Your sound like someone in great shape...where do you find the discipline?
It was too late for me to change my Rx from original to generic so my co-pay was $50 instead of $10 but will change it next month.
I can't tell you lucky and grateful I, and others, feel that some of you are hanging out in this forum to help us newbies.
Good night all... Nisa0 -
I started Anastrozole (generic Arimidex) in September 2011. For the first few months, the joint pain and stiffness was manageable - I knew they were SEs, and was prepared to deal with them.
But slowly the new SE's started showing up. By August of 2013 (almost a year later), I had 8 major SEs, and finally decided to talk to my MO about a drug holiday.
Here is what was happening:
1) Joint and muscle pain to the point of being disabled and dependent on a cane just to walk.
2) Blood pressure (that started at 108/68) went up to 150/90, then shot up to 177/100.
3) Immovable trigger finger and trigger thumb every morning
4) "Lady parts" issues: dryness, burning, and bleeding from fragile, torn tissues - just from the movement of walking.
5) Bladder issues: feeling of UTI without any evidence of infection; near-incontinence
6) Weight gain - lost 60 pounds after BMX, kept my healthy diet at 1200 calories, started Anastrozole and weight shot up 20 lbs.
7) Completely drained of energy... no strength, no edurance, napped for three hours a day.... AND through the night.
8) Crushing depression. I didn't even want to get out of bed because I knew the pain would be so bad. I made no social plans because it took too much effort and too much energy.
I ruled out every possible organic cause for the above SEs, then saw the MO. I asked for a two month drug holiday, and got it.
It's been six weeks. The difference has been amazing. With no other medications - just stopping the Arimidex,
1) About 95% of the pain is GONE. My husband says I am taller - I'm not all hunched over and limping from the pain. I still get stiff, but I can move and walk and swim without having to take a Norco to take the edge off the debilitating pain.
2) My BP is now 112/69.
3) Trigger thumb is gone. Trigger finger shows up maybe once a week instead of every morning.
4) "Lady Parts" issues have resolved. What a relief, not just to be pain-free, but to be able to regain that part of marriage again!
5) Bladder issues have resolved. No more burning or pain or near-incontinence.
6) Slowly losing the weight. Down 4 pounds so far. Again - haven't changed diet or exercised very much.
7) Cleaned out the pond - stood down in it and threw boulders up onto the lawn. Climbed on the waterfall like Spiderman. Cleaned out the garage, hefting heavy boxes of stuff. Late for an appointment at the hospital, elevator too slow, marched up four flights of stairs without stopping.
8) Now I wake up before my alarm. My first thought is "I'm HAPPY!!!" I want to go places and see people and do things. We've planned our first vacation that I haven't dreaded. I have my sense of humor back.
SO - now I have to see the MO in two weeks. Do I go back on the Anastrozole, hoping the SEs won't be as bad the second time around? Do I try another drug hoping it won't be the same? Or do I just say enough is enough, and I would rather have quality of life instead of quantity.
I don't want to be a weenie or a quitter; that's why it's so hard to face the fact that if I want to have a semblance of a life for the next four years, I will need either 8 different medications or surgical interventions just for the SEs. OR - I can just stop the pill that's making me sick.
I should clarify - my risk is less than 1%. My MO did say that my SEs were among the most severe she had seen, and that most likely, Aromasin or Femara would give me the same ones. She suspected that a two month break from the Anastrozole would not mean the SEs would come back milder. She said she felt comfortable letting me go off the drug completely. But still, I have to make that decision in two weeks.
If I were 30 years old with small children, you bet I'd do everything I possibly could to stave off a recurrence. But I'm not.
And I would never advocate for anyone who is having mild SEs to go off the drug - there are plenty of interventions (both drugs and other things) that make the SEs liveable. If you think about it, four years isn't that long a time. And if you're just starting, you may very well be one of those women who don't have any SEs at all! They just don't post on these kinds of threads because they're out living their lives.
So sorry this is so long. Obviously, I'm having this conversation a lot these days... with myself, with family, with friends, and with BC sisters.
Any suggestions or opinions?
Thank you, Ladies!
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Obviously no one can really tell you what to do... but I thought some said after a medication vacation the SE didn't seem to return as bad.. so my advice would be to try to go back on the meds and see how you feel-maybe try the real armidex instead of generic.. believe me, I hate taking this medication and some SE are getting hard to live with so I do understand what you mean about quality over quanity ..
Lets see what others suggest to you..
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How does one figure out the percentage of risk??? 1% as Blessings says..........
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I think IamNancy has the right idea. Try it again after the holiday. If the SE's get bad again, stop for another couple of weeks, then try one of the other AIs. If the SE's come back with a different one then you know you've tried everything and then you can decide about stopping or keeping going. On the other hand, if your recurrence risk is 1%, how much is the arimidex decreasing that 1%? Are the side effects worth the amount of change in your risk number?
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I have found that I have fewer SEs on the real Arimidex and do worse on the generic. The generic makes me so nauseated. If you are having lots of SEs on the generic and can afford the real Arimidex, try to switch. The cost difference is staggering if you have to pay out of pocket.
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I'm staying on anastrazole because it lowers my risk significantly having had BC that is 80% ER+. I experience many debilitating side effects, but exercise does really help. I also have osteopenia, and will have a bone density scan in December to see if I have developed osteopenia despite weight bearing exercise. If I have, my doctor is recommending Prolia? Actually four of my doctors have recommended that medication. I will follow their advice and pray that it works without major side effects. These decisions are difficult because we have already experienced a lot of trauma from having BC and the side effects of treatment. I truly sympathize with all of you.
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Loran - that percentage is on your OncoDX report. I looked at your numbers and was surprised by what seems like a not-too threateting 1cm, stage 1, grade 1 diagnosis. Yet why in the world is your Octotype Dx 34? I clearly don't get how biology works and the lack of correspondence among numbers.
I had 4 tumors in my left breast and 4 different oncotype scores, and then was told that those numbers don't mean anything because there were no women like me, with multifocal disease, on the 550+ sample. Couldn't someone mention this BEFORE we send my specimens for oncotype testing?!
Best, Nisa0 -
I had three large tumors but they only tested the largest one with the Oncotype. I had a score of 16. Who knows what the other two tumors would have scored. I feel a bit cheated about that, but in did chemo anyway because of the size if my tumors. Glad to know that I am not alone!
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I'm one of lucky ones who have had super mild symptoms from anastrasole. Given my age they could also be symptoms of that and unrelated to A.
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Rocket - I had my first Prolia injection in January 2012 and second in July 2012. No SEs that couldn't also be tied to Arimidex. Trigger thumb resolved itself after several months. Insomnia has been a problem for years so I can't directly tie that to either one. Fatigue is probably the result of the insomnia rather than drugs. Feet are stiff in the morning and after being immobile for a while but I'm able to work out, walk for miles and jog without problems. Prolia can cause problems if you have dental work done so my 6-month dental check-ups are immediately prior to the injection so I'm on the waning end of the cycle. Prolia is an expensive injection so it would certainly be a plus if your insurance will cover it. I'm not sure how many ladies here are using Prolia but hopefully a few more will chime in for you.
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pattythenurse - glad to hear it's just a parasite and not something else. Please keep us posted how that goes.
I'm also thinking it's strange that I've been on this drug for coming up on three years now and just now starting to have the tendon issues. You would have thought I'd have had them before. I'm going to see how therapy goes and if not going well, I'll talk to my MO when I see her in January.
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Rocket - your tumors were quite similar to mine. My different oncotypes were just 1 or 2 points apart - "typical" said Genomic folk as multiple tumors often are single tumor branches.
I did chemo for the same reasons you did. Now that I am done with chemo, and with expansions, my onco spoke of adding entire chest wall radiation! But rads now will ruin the recon work, I think. Can you tell me why you did rads after bi-mastectomy?
Wren44 - I do not understand what you mean by "symptoms of that" but I want to be like you, doing well on the Arimidex that I started last night. No SEs yet
Thanks, Nisa0 -
Nisa, I'm turning 73 this month, so creakiness may be age related.
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Nisavilla...Maybe it's the PR- that gives me a high score. I remember my MO stating that I have a 23% chance of getting bone mets or liver mets, and chemo.would bring my recurrence chance down to 18%, or something like that. It's all confusing. My DX is similar to Wren's... I'll be 52 years old this month. MO started me on Tamoxifen said he'll switch me to Arimidex in 3 years???
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i've been on arimidex for almost 7 months now. my cholesterol was 210, so my PCP put me on 20mg. lovastatin a couple of months ago and since then, i've had chronic diarrhea. i mean every. single. day. i have no other symptoms that would be a concern. no cramping, no blood, nothing. i'm convinced it's the meds, and i'm wondering if anyone has had problems with arimidex and a statin. the arimidex is brutal, but except for the diarrhea, i'm not complaining too much. what's going on? anyone have any similar complaints?
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210 is not that high. I wouldn't go on a statin with that number, I'd eat oatmeal, take niacin etc. What are your HDL and LDL numbers?
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Nisa, my three tumors were all of considerable size, and all originated separately as they were in three different breast quadrants. The 2.1 cm tumor had a close, 2mm, but acceptable margin, but since it was close, the rad onc recommended rads to be sure and wipe out any locally remaining cancer cells that may not have been detected. I was of the mindset that I needed to do everything possible to give myself the best shot at surviving this disease, so I chose an aggressive treatment.
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Wren44 - You must be a person in really good shape (BC aside) if creakiness is starting now. I was in my late 30s when mine started. Cant blame my weight because I am slim but I am really "noisy." My kids used to make fun of me when going upstairs...crack, crack...too funny.
Loral - Happy Birthday this month!. My PR on the path report was 5% and on the oncotype report was 90%. No MO has explained that big difference yet. Regardless of numbers, and your risk is the same as mine, we are going to fight this beast with all we've got. Arimidex is usually for post-menopausal women and Tamoxifen for pre-menopasual. Maybe that is why he predicts a switch in the future?
Ruth - I wanted you to be wrong about the impact of exercise on SEs, but what you wrote applies to me, For a 3rd time, I made myself walk 2 miles and returned with quantifiable less SEs than when I started. Thanks!
Nisa0 -
ruth, my total cholesterol was actually 231. triglycerides, 151. HDL 59 and LDL 142
i think i'm going to ask my onc about the statin. sometimes other docs don't have a clue about arimidex and all the side effects and i think the statin is causing part of the problem. i'm so confused and tired of the constant diarrhea. ugh.
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ditto to what ruth said, high is 350 or above...
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I would, for sure, talk to the doctor. Then I would stop the statins and see if that takes care of the diarrhea (which is not something that you should be having to put up with, no matter what the cause). 231 is not that high of a total number either. I'd really work on the diet (start eating oatmeal, more fruits/veggies/less red meat/candy etc.) before I took a statin and Niacin, taken under a doctor's supervision of course, can raise the HDL numbers (which is what I do) and for most people without the potentially serious possible SEs of statins.
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Ruth, do you have flushing with Niacin? I'm already on a statin but my PCP said a sophisticated blood test showed fairly high levels of some bad cholesterol components, so she put me on Niacin. My husband had a horrible reaction to prescription Niaspan and ended up in the ER. My PCP said to take an aspirin an hour before the Niacin and then take it with applesauce.
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I take a brand called Slo-Niacin (not no flush, which isn't as effective). I buy it at Walmart. It releases the niacin throughout the day instead of all at once, and I've never had flushing (and I take a pretty high dose, 1500 mg is what it took to get the cholestroel to where we wanted it).
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