For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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HapB,
My MO supported the name brand. I gave him a spreadsheet of my SEs by generic brand. He just wants me to finish the 5 years and will work with me for that to happen.
I know you go to a top-notch center but I think your team is pretty narrow minded if they don't believe there is a difference in the various manufacturers.
Coach Vicky
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I am weakly ER+ at 4%, PR-, HER2-. I'm having a hard time finding information on how much I would benefit from taking an AI. I know there is some benefit but I don't know if there is enough to justify the downsides of the drug. Does anyone have any experience with this?
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I am weakly ER+ at 4%, PR-, HER2-. I'm having a hard time finding information on how much I would benefit from taking an AI. I know there is some benefit but I don't know if there is enough to justify the downsides of the drug. Does anyone have any experience with this?
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HapB Thank you for the link. The issue I'm having is that I'm a weak ER+(4%) which means I won't benefit as much from anti hormonal therapy. I may benefit some but I won't benefit nearly as much as someone who has a ER+ of say 40 % or 50% or 95%. Generally the higher the ER+, the higher the benefit. There just doesn't seem to be a lot of data out there on patients with lower ER+. Studies are generally done on the stronger ER+ women. Having a better idea of the amount of benefit I would get would help me make the decision on whether it makes sense for me to take the drug.
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HapB I'm stage 1A ER+(4%), PR-, HER2-. I'm meeting with my MO a week after my last infusion which is coming up soon. Yes, it may not be knowable. The research just may not be there for someone with my profile. I just don't want my MO to automatically prescribe it. However, I'm open to listening to what she says and am willing to try it to see how I do on it. From what I've read there isn't a consensus among MO's as to what is best in this circumstance. Some believe that any percentage of ER warrants it, while others feel the benefits don't outweigh the side effects for low ER+ women. One study showed that women with low ER+ benefited but it didn't say by how much so again, not much information and only one study. The general thought is that the higher the ER+ the greater the benefit. The lack of solid information makes the decision harder.
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klvans, For a long time I have been wondering the same thing as you. In my case I'm 25% ER+ and 50% PR+, HER2-. I've been on anastrozole since April 2015. Before I started taking it, I asked my MO whether I would receive any benefit from taking the drug and she said as long as a person is 1% positive, it should provide a benefit. She also said being PR+ helps, too. I take it but I still wonder how much it helps. So many women on these boards taking it are 90% or more ER+. My cancer is lobular and most lobular cancers are very highly ER+. I often just wonder where that leaves me. There isn't much research out there to help answer these questions.
However, I'm taking it and will continue to take it. I haven't had many SEs and I'm willing to try anything that will help keep cancer away. Maybe try it and see what your SEs are like. If awful, you can always stop. Best wishes to you and congrats on being so close to finishing your treatments.
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Thank you KayaRose. I think the new proto call is to tell patients who are even 1% to take it. I believe it's based on the one study I mentioned. I mean "some benefit" sounds so nebulous. It's so much different than what they tell the ER+90% women who get a 50% recurrence reduction. I know at ER+4% mine won't be close to that. I really wish I knew what it would be. I'm willing to try it, but feel less enthusiastic because I'm 4% and PR-. But yes I'll give it a go.
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klbvans, My biggest question is always - if estrogen didn't fuel my cancer, what did? No one in my family has had breast cancer. My MO sent me for genetic testing because my father died from stomach cancer. She said there is a form of lobular stomach cancer and I wasn't sure what type my father had. Fortunately, I tested negative for the stomach cancer mutation. So I'm low on the estrogen percentage and clean on the genetic side. How did this happen to me? I'm sure that's the same question everyone on these boards wonders. But I'd feel better if I was 100% ER +. At least that way I'd know the anastrozole was for sure giving me a fighting chance.
Got to believe that some benefit is better than no benefit.
If you are very uncomfortable about taking anastrozole, you could always seek a second opinion.
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KayaRose Yes, so much is unknown about cancer. There seems to be more research on the ER+ side and the genetic side. If you don't fall into those categories it's a mystery. It's hard not knowing why it happened.
I could get a second opinion but I think the standard of care is 1% and above get the AI recommendation. I think there's a question of liability if you don't recommend the standard. I'll talk to my oncologist and see what she says. I'm pretty sure she'll recommend it but I'm curious to see if she can give me a more accurate read on its benefits, other than a general "it'll help or it will provide some benefit."
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Hi All -
I picked up my Arimidex today from the pharmacy and found out that the brand name is Teva. I have decided to take both until Feb 1st. At that point, I will stop the Evista and just do the Arimidex. That I will be able to have a full month to judge it by. I took my first one today just a bit later in the morning than I would take the Evista. So far I don't think anything has happened. Here's hoping! I am ventrying to have an open mind. Even my breast surgeon agrees that I should give it a try.
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TrmTab- my thyroid seems a little off. I've only been on anastozole for 9 months, and I tried exesmestaine (I know that's wrong sp) for 2 of those. Today I went to my primary to see if my thyroid is off, it seems to be. I didn't know these meds could react poorly.
JKL2017 my joint pain definitely seems to be in the morning and improves as the day goes on. It's 1.30pm and I feel fine, but I wake up with sore hands and hips.
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Hi everyone. I don't know if this is the right place to post this but...I've been a member of this forum going on 3 years. In the past year I've noticed a real increase of members NOT including their stats. I spoke to the moderators about it and they said although they encourage it, they cannot make it mandatory. IMO its very difficult to answer individual questions accurately without knowing the stats. Although I respect all decisions made, I don't really understand why you would want to be part of this community but not share. Feedback anyone?
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Dtad, The problem is that making your information public is so convoluted. It should be much easier and obvious how to do it. I agree that it is very difficult to answer questions when you do not know all of that person's particulars. I wish that something could be done about making the Settings part of your information when you sign up. And that it was extremely clear how to make everything public.
HUGS!
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The mods have been pushing community involvement on their way too expensive “upgrade” to BCO. Scroll through the active topics list. I don’t know how to do links, but these topics aren’t hard to find. Seems like that would be the place for this suggestion?
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The mods have been pushing community involvement on their way too expensive “upgrade” to BCO. Scroll through the active topics list. I don’t know how to do links, but these topics aren’t hard to find. Seems like that would be the place for this suggestion?
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I've recently started taking my Arimidex in the evening instead of morning and it seems to be helping with my aches and pains. I'm waiting a bit to see if this is my imagination or if it's really helping. Gentle hugs all
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A friend found out she's not supposed to take benadryl with tamoxifen but what about with anastrozole? I looked it up but didn't find anything...
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bn4gvn...I was cleared through all of my doctors to take Benadryl to help me sleep and I am on anastrozole. Hope that helps!
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I switched back to taking theArimidex in the morning. I had worse aches and pains when I took it at night.
My MO took me off the Fosomax and any biophosphonates because I've had jaw surgery twice and so he and my oral surgeon decided they don't want to chance any issues that could arise from taking Fosomax or Boniva. My dexa numbers are good so MO said unless my numbers get worse, I don't need either of them. Yeah!!
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I take 3mg of Melatonin. Works great and all docs are okay with it.
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Hello Everyone,
I have been on Arimidex plus Faslodex for 8 months. Is anyone on that combination? Mostly my side effects are stiffness and arthritis pain upon rising, but usually feel better once I get going. I don't mind the Arimidex, but dread getting the shots every month. I always have soreness for a couple of days and often headaches and nausea. I'm trying hard to hang in for the long term, but the days of feeling really good are few and far between.
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Hi, I started arimidex 8/17. Stage 2A right side mast, with two lymph nodes positive and 27 removed,4/16/15, followed by 12 weeks chemo and 28 rads. Tamoxifen 1 year (or so), then arimidex. So far, the only side effect is slight appetite decrease, so lost a few pounds. I went into all of this with arthritis of rt knee, left hip and spinal stenosis. No probs yet and I'm a preschool teacher and avid walker, turning 60 in a couple of months. I take that back-hot flashes are a bugger! But manageable.Considering a supplement for bone health though. I've never been a fan of pills, so I understand your reluctance. So far, I'm pleasantly surprised at the lack of side effects, but I know experiences vary. I'm to be on it for at least 5 years, so still time for effects to appear I guess. Very good luck to you, and I hope your continued treatment is smooth
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just got the results of my 2 year DEXA scan....2 years on Arimidex and I have lost 17% bone density in my femur....!!! Yikes!
I am now osteopenia. I see the MO on Monday for my 6 month follow up.
For those taking something to counter this side effect, periodic shots, weekly pills, what has anyone been "happy" with?
So sad, only 56 and in two years lost 17%, I don't have that much more to give up :-)
TT
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my baseline DEXA showed beginning osteopenia. 2 years later it had progressed. Next one, full blown osteoporosis. MO and pcp wanted me on Fosomax. I wouldn’t do it, the se from that scared me more than reoccurrence.
I take 1200 calcium and 5000 D3 daily.
I’m off Arimadex and tamoxifen now. I hope my bones can recover.
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Thanks, Spookie. So I started in full normal range and in two years now osteopenia. Did you move to having a DEXA every year to measure change or did you still have a 2 year check?
I take 3000 D3 daily but not more calcium than in my multivit (300 units) plus diet...just ordered a bottle of Nature's Bounty 1200 calcium, arrives Friday. How I love amazon prime!
That said, my calcium number in my most recent blood test is 9.8 with the normal range being 8.6 to 10.2, so I thought I was doing okay for calcium...TT
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I have had 2 infusions (once yearly) of Reclast for osteoporosis. I did not have any bad side effects either time. I will have my next dexa scan in September. I hope I see some improvement.
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Okay, so the only SE I see that I want is the reduction in appetite.
I'm already in osteopenia and haven't even started the Arimidex. I can't beleive I have to wait two years for the next bone density test. That seems too long.
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no I didn’t have yearly. I’m not due till next Jan for another DEXA.
The calcium and D3 is what my MO said to take when I started. Apparently didn’t help much. I’ll continue with the D3, that helps my fibromyalgia not sure about the calcium.
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As for se from Fosomax I had looked at the Mayo site, said there could be reaction to some chemos. Asked my mo, he agreed.
And osteonecrosis of the jaw. It was messing with my teeth, 68 years old and dentist found 3 cavities!! No more.
No thanks to both from me. I don’t want to do the shots either.
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can arimidex cause high cholesterol and mood swings
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