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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • Smurfette26
    Smurfette26 Member Posts: 269

    I have been on Arimidex for 11 months and my latest blood tests show a rise in cholesterol and elevated liver enzymes. Have had an abdominal Ultra Sound but don't have the results yet. I see my Onc next week. Will have to discuss these issues with him. My blood tests also showed an "abnormal Myeloma profile"??? GP is retesting that in 3 months.

  • bjb01
    bjb01 Member Posts: 46

    hope the results are good smurfette26. i'm really looking to come away from my follow up this week with my MO. prior to BC, i took only 2 meds. a statin for high cholesterol (low dose brought me to normal very quickly ) and vagifem. i feel that it helped tremendously with all things vaginal after my hysterectomy in 2009. I've been a do-er all m life and now feel as though it's not worth it. this is really the most that I have discussed this EVER. i have felt a lot of guilt that i even struggle to begin with. I'm alive. this should make things better. right? at the end of the day, I'm struggling with the mere fact that I'm struggling.......ugh

  • moondust
    moondust Member Posts: 207

    Thanks, lala. Great info. I will discuss all that with my MO on Tuesday. Bone loss, joint pain and higher cholesterol are pretty significant drawbacks in my opinion. I also exercise every day. My joint pain has not been too bad but I am definitely stiffer than I was.My cholesterol was under 200 before AIs, so it would be interesting (but probably depressing) to get it checked now.

  • Redheaded1
    Redheaded1 Member Posts: 1,455

    The Arimidex does increase cholesterol. Mine was elevated and I hit the ceiling and told the mo I walk 3 miles, I eat oattmal every day--went off the drug for 3 weeks, retested, it was normal. So we tried Femara, and I lasted 4 days. Flet like I was 100 years old at least. It also spiked my Liver Enzymes for one test.

    BJB---it takes a good while to feel sorta like you did before BC. I didn't of Chemo, I am 3 years almost from diagnosis and I feel like crossing the days off the calendar till I am done with the drug. Then I will probably stress that I need the drug.....Cancer made me a lot more fearful.

  • lala1
    lala1 Member Posts: 974

    bjb01---Would your doctor let you try Tamoxifen? If you've tried all the AIs and have that much trouble, maybe you could do the Tamoxifen.

  • lala1
    lala1 Member Posts: 974

    By the way, I just realized my previous post of the pros and cons of hormonal therapy didn't quite print out like I had it. My columns got messed up. The dashes represent "not applicable" for that pro or con for that particular therapy. For example, Tamoxifen has "protects bones" while AI does not. And Tamoxifen doesn't raise cholesterol while an AI does. If you have trouble figuring out the columns just let me know. Sorry!!

  • bjb01
    bjb01 Member Posts: 46

    lala1....i'm sure that this will be put on the table when we meet this week. I'm not opposed to it, just need the cold hard facts. I've always been of the opinion that give me as much information as possible so that I can make an informed choice. totally understanding that this is their speciality, no doubt about it. I had a lumpectomy, chemo and 33 rads and missed only one day of work. I'm a pretty tough broad to be perfectly honest. but the effects of the AI's have made things miserable. so I feel crappy for 3-5 (or more) years while taking them. maybe I could expect that and then some and feel more normal???? i just don't have enough data to make that choice.

    redhead1....i understand your last statement. all this time I felt that I needed to be proactive in my own treatment options. i kind of hated getting to the end of chemo, since i felt that at least during that I was actively treating this.

    i appreciate everyone's feedback, it means a lot to share what we are going through ......

  • jnu3
    jnu3 Member Posts: 56

    This will reply with a December date. I haven't been on site for a while. I do take my anastrozole in the am along with B complex, CoQ10, a probiotic and a calcium/vit d chew. In the pm, I take my atorvastatin (liptor) 3-2000 unit Vit D (only 2 in spring/summer) and another calcium/vit d chew. At the moment the only SE's that I have had are those damn hot flashes.

    I was off anastrozle following knee surgery to give my bones a chance to heal without complications and following dental extractions. I followed with my MO a couple weeks ago and he advised that studies now suggest that the best treatment is 10 year vs. 5 years anastrozole. Well, I am sorry, but he can take the additional five years. I haven't been on it even a full year, but I am not one to take anything any longer that I have too.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    4 years ago when I started this pill I was told 10 years. I will continue to take it forever if necessary.

  • dtad
    dtad Member Posts: 771

    lala....i'm a little confused about your docs' statistics. I have always been under the impression that anti hormone treatment lowers the risk of recurrence by 50 percent. Although I never really read anything scientific to back that up. Now you are saying that is only for lymph positive people who have had chemo and or rads. Do they really know? As far as I know there are not any studies done that follow those of us who refuse the anti hormone treatment. However it does make more sense to me that individual statistics would change that recurrence rate rather than a blanket 50 percent reduction. Also if your MOs stat of a 40 percent reduction in recurrence from excersise is correct then why in the world are they prescribing a drug that makes exercise difficult to impossible for some of us? Just very disappointed that the numbers are not more clear. It would really help all of us make more informed decisions. Good luck to all navigating this disease.

  • lala1
    lala1 Member Posts: 974

    dtad---He says the risk of recurrence is lowered by 50% for taking Tamoxifen as opposed to nothing. The statistics for those who had chemo and/or rads was comparing taking Tamoxifen or an AI. Definite reduction taking a hormone med. I'm now trying to figure out if I should stay on Tamoxifen or swap to an AI based on the SOFT and TEXT trials. He says those numbers skewed the advantage to those who were node positive and had chemo and/or rads.

  • dtad
    dtad Member Posts: 771

    oh ok gotcha!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Spookie, I'm with you. I'll take it forever if it helps keep BC from coming back. I was told 5 years but my new MO might have a different take on it.

    HUGS!

  • grandma3X
    grandma3X Member Posts: 297

    Here's what I found on this topic:

    "Meta-analysis of the Early Breast Cancer Trialists' Collaborative Group (EBCTCG) showed that, at a median follow-up of 15 years, 5 years of adjuvant tamoxifen therapy significantly reduced recurrence risk by 41% and mortality by 34% in patients with ER+ tumors compared with placebo. Adjuvant tamoxifen therapy reduced the risk of local recurrences by 53% (hazard ratio (HR) = 0.47; P < 0.00001) and the risk of DM by 36% (HR = 0.64; P < 0.00001)" - from this paper:

    Minimizing early relapse and maximizing treatment outcomes in hormone-sensitive postmenopausal breast cancer: efficacy review of AI trials

    To my knowledge, there are no studies of AI vs. placebo (because clinical studies can only compare new drugs to those already used as part of standard care, i.e. Tamoxifen), so the benefit of AI over nothing at all is not known. Other studies have compared AIs to Tamoxifen, though, and found that for postmenopausal women, AIs provide more protection. So the 50-60% reduction in risk for AIs sounds about right. The 12% reduction in recurrence must be a mistake, or it's looking at a different time frame, like risk after stopping at 5 years, for example.

  • Redheaded1
    Redheaded1 Member Posts: 1,455

    I don't agree with the lymph node positive comment. I had an Oncotype DX test done on my tumor and it predicts the reoccurrences rate with and without "Tamoxifen" but my MO says AI's increase you a couple more percentage points than the Tamoxifen. I am taking it for about a 6-7% improvement in the odds of reoccurrences. Because, if it came back---and I wasn't taking it, I would have to admit then, that even a 1% improvement would make it worth it. I won't do chemo.

  • MarcellaPa
    MarcellaPa Member Posts: 65

    Hi JNU3:

    I'm interested in your experience with dental work and knee surgery while on anastrazole.

    I started the anastrazole 11-1-16 and had a dental exam today that revealed a couple issues that may require extractions/implants. I also need bilateral knee replacements in the coming year. I haven't started a drug to address the bone issues yet although my MO recommended Prolia.

    What were your instructions regarding stopping/starting anastrozole for dental and knee procedures?

    Are you also prescribed a Prolia or other drug to address bone loss and if so, were you instructed to stop that medication also?

    I'm overwhelmed by all of these extra complications and considerations related to taking anastrazole and the medications it's side effects require.

    Your sharing as well as others experiences in this area are so appreciated!,

    Marcella



  • lala1
    lala1 Member Posts: 974

    grandma3x---Keeping in mind that I'm copying all my info from a hand written sheet of paper my BS whipped off while keeping me from jumping off a ledge having just found out I had BC, this is what I'm deciphering from it. The 12% number was written next to the words "reduction in risk of recurrence on left" which for me is the side I had a mastectomy on. I think what he's saying is the mastectomy reduces the risk a lot but the hormone therapy gives you another 12% reduction for the side (or sides) you had removed. The other numbers are for recurrence in a remaining breast. Don't know if I'm reading it right but this is what I think he meant. I have my 4 year check up with him in March so I'm going to take the paper and clarify some of his details.

  • grandma3X
    grandma3X Member Posts: 297

    Lala -that sounds about right. Let us know what your MO says. Congratulations on reaching your 4 year mark!! I just passed my first anniversary by having another biopsy, so still looking forward to the day when I'm not in constant fear of this disease.

  • kayarose
    kayarose Member Posts: 35

    MarcellaPA, Just wanted to jump in here regarding your question about dental work. I've been taking anastrozole since April, 2015. I started it while going through my radiation treatments. After finishing all my treatments, I found I had cataracts and dental issues. I ended up having cataract surgery in both eyes as well as a tooth extracted and a bridge replaced. I was not taken off of anastrozole for either procedures

    I have also had one shot of Prolia and am due for my second in January. I was told I must get all major dental work completed before the Prolia injection, which I did. I haven't noticed any SEs from Prolia. I was very worried about possible jaw bone problems since my BC treatments seemed to have an effect on my teeth in general. But so far, so good.

    I have not had any joint replacement surgery and would be interested to hear whether or not anastrozole and prolia need to be discontinued during the recovery.

  • MarcellaPa
    MarcellaPa Member Posts: 65

    Thanks KayaRose for the feedback!

    Its good to hear you are doing well on the Prolia so far and the anastrozole.

    I may have to have an extraction and implant so it will be a while before I can start the Prolia.

    I've had so many dental issues over the years, I wish I didn't have to take a drug that might cause issues when combined with invasive dental procedures. That's what's making me stressed--all the details of ongoing treatment never end it seems.

    Ahhh to be pre-breast cancer when all I took was a diuretic for mild high blood pressure. Those were the days! : )





  • jpBCfree
    jpBCfree Member Posts: 72

    Hello all.

    Because I've chosen to take tamoxifen instead of anastrozole, I have a sealed, never touched 3 month supply of ARMIDEX brand name (90tabs) and new never touched 1 month supply of Anastrozole by Accord. I'm happy to send them to you for free if what you are taking.

    Thanks

  • lala1
    lala1 Member Posts: 974

    This article is one of the ones my MO pointed to in our talk about continuing Tamoxifen or swapping to an AI. It points out that for women who did not need chemo, Tamoxifen was enough to reduce risk. If you add ovarian suppression (which I did with my TLH), it reduces even further. The women who get the most benefit from OS and AI are the ones who had chemo.

    SABCS 2014: Ovarian Suppression Added to Hormonal Therapy Reduces Risk of Recu

  • trmtab
    trmtab Member Posts: 863

    how long have folks stayed off Arimidex when they have been switching brands?

    I was going to go off Arimidex generic before my scheduled EX, stay off 2 weeks per the PS direction and then start with brand Arimidex once the PS gave the okay to restart meds in general.

    Now my EX has been postponed...so the question is... is 2 weeks the ideal time, should it be 3...or is less okay???

    I have read that the half life of the pill is 2 days, so after day 4 the "protection" of the AI is gone

    I also have my first mammogram on remaining R breast at end of January, so really don't want to have a surprise from having been off AI for too much time.

    Any thoughts?



  • bjb01
    bjb01 Member Posts: 46

    TRM....unfortunately I have had fairly difficult issues with all 3 AI's. stopped for 4 weeks after the first and the second. When we started the third (femara) I had what might be an allergic reaction 3 weeks later. I have now been off for 5 weeks and we are waiting till after the new year to be sure before I restart. so prob 7 weeks. My MO indicated that he was not overly concerned with that length of time. I experienced horrible itching of the lashlines, eyelids, face and just inside my ears. He felt that since this was the last AI attempted, he wanted to be sure that it subsided before restarting to be sure that it was indeed the Femara. itching is 80% better, but not gone.....so is it the femara? I don't think so, but I'm doing what the derm and my PCP asked. If I restart and it increases then I know it's the femara. time will tell. I get the feeling that the 5-10 years prescribed course of AI's, maybe several weeks doesn't make all that much difference. at least that's the feeling that I'm getting from me MO.

    I felt the same way TRM when approaching my first year anniv. the switching and stopping was making me nervous as this is the ONE proactive thing that I can do to help myself. I'm merely listening to my docs and doing as they say

  • grandma3X
    grandma3X Member Posts: 297

    Trmtab - "half-life" is a bit deceiving - it means that the concentration declines by half every 2 days so after 2 days, it's at 1/2 of the initial value, then at 4 days it declines by half again to 1/4 of the initial value, then 1/8 of the initial value, 1/16, 1/32, etc. You should check with your MO, but I don't think there will be much difference between 2 and 3 weeks off the drug. When I had my exchange, the PS told me to stop taking the AI 4 weeks before surgery and then not take it for a week after exchange. Every PS seems to be different.

    I also think that going off the drug for a couple of weeks won't make a difference in your mammogram. I was told that by the time a tumor can be detected by mammography, it's probably been growing for about 10 years.

    Hugs and best wishes for your mom's recovery.
  • Redheaded1
    Redheaded1 Member Posts: 1,455

    trmtab-not sure why you need to go off the generic to switch to the name brand---of the same drug. I have been off my drug 2 weeks when I went from Ariimidex to Femara--then 30 days when I went from Femara back to Arimidex.....my onc kinda wants me feeling pretty good before I switch to a different drug.

    I did see my Onc today since It has been 1 month since I started doing my AI every other day. I am feeling great---like before I knew Ihad Cancer----and I told him I wondered if maybe I should jump back in daily and he said no--but lets do this----we know you are avoiding your toxicity issues now, so lets do 30 days where you just miss two doses a week and see how you are---so I will take it every day except Monday and Friday until I see him again January. If I am still feeling really good like I am to day, we will then try to miss just one dose a week. Finding the sweet spot that gives me the most of the drug without the side effect. He also ordered an Estradiol test to "humor me" we had a long discussion about the steps of getting a drug approved and that there isn't any hard and fast proofs or numbers to shoot for. He said even in women taking AI's that are postmenopausal, their estradiol level can fluctuate throughout the day just like your blood pressure does. Then he said to humor himself, he would repeat the test when I return in a month. I am praying that it a) is very low today and 2) is even lower in a month----I know he thinks it will be illustrative of what he said--I'd love to have it prove him wrong....YES I AM NAUGHTY AND SANTA KNOWS IT>,,,,,,

  • Redheaded1
    Redheaded1 Member Posts: 1,455

    Bjb01--could you be allergic to a filler in the drug? My Oncologist poo[poos that idea, but my pharmacist says many of our sensitivities are related to a filler. Somebody a while ago posted a listing of the fillers in the various brands of Arimidex.....I just know I do the best on the TEVA brand. I have heard people on Femara like the ROXANE brand and the TEVA Brand best.

    Itching around the face is a serious side effect of something. Did you get congested at all.?

  • trmtab
    trmtab Member Posts: 863

    Redhead -- I guess the idea of going off of the drug is two fold. First, I was scheduled to have exchange surgery 12/28 so my PS wanted me off meds a week before and a week after. That would allow the meds to "clear out" of my system and hopefully have some of the side effects move off...and then given the Arimidex brand a fresh start.

    Unfortunately my mother had a stroke earlier this week so my exchange surgery has been postponed as I will need to be her care provider so I can't be on the injured reserve list myself! ...I guess I was just continuing to follow the protocol I had of no arimidex for a couple of weeks...but you bring up a good point, perhaps now that I won't be having surgery, perhaps I shouldn't have a down period???

  • bjb01
    bjb01 Member Posts: 46

    redhead1.....my guess it that most anything is possible at this point. there is no visible rash, just the awful itch. it is better than 6 weeks ago. one derm thinks med the other does not. pcp said it could be the drug, my MO is skeptical. kinda funny actually. I totally get that it's a very difficult thing to sort out for sure. bottom line, I will start back on it in Jan and see where it leads. I will admit though, it sure feels better to be on none. the SE are dwindling down and it feels nice to feel himan again..................ugh :):)

  • michelept
    michelept Member Posts: 8

    i've been on all the blockers..........trying to find one that doesn't KILL my joints.........so, I've landed back on Arimidex. Man, it's a BEAST. Not only are my bones on fire, I'm bruising like crazy and look like a cage fighter.

    Anyone else have the bruising issues?

    And what has anyone found, if ANYTHING, that helps the joint pain!

    Thx all

    best,

    Michele