For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Thanks everyone for your responses on bone meds.
Redheaded sorry about your fracture. The last time I had a bone density it was only my feet, and the results was osteopenia.
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I have been following you ladies for awhile now and will join you starting tomorrow. This board really educated my on what questions to ask my MO and prepared me for starting this path. I see myself in the good company of many intelligent caring women. Thank you for all your sharing your experiences and knowledge.
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GypsyJo, I did the same as you. I read all the posts so I was quite prepared when I went for my first visit to the MO. I figured I wouldn't have SEs (and haven't so far) but I still needed to know how my MO felt about things. I had a zillion questions. And he took the time to answer them all. Good luck with your visit to the MO. HUGS!
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I was just about to start a new post on this very topic. So I'll join your conversation instead.
I don't want to scare anyone, but then again, I feel there is a truth out there that isn't being told to us by our doctors.
I started on Tamoxifen and another drug (a shot I took every 3 months, I can't remember the name) because I was still menstruating. The shot was to shut down my cycle, shut down my ovaries. The Tamoxifen caused severely painful and fast growing cysts. I couldn't bear it for long. The doctor talked about the option of surgically removing my ovaries. This is the painful choice I made. I gave up the option of having another child.
Then he started me on Arimidex. The worst mistake I didn't even know I was making.
I took Arimidex for 3 years and 11 months. I stopped taking it early because the damage it was doing to my body and even now - about a year later, the full impact of what this drug has done to my body is still coming to light.
I'm 39. I had a bone scan (DEXXA scan) when I started the medication at 35. I had "very strong bones", and my oncologist (who is a respected dr at Seattle Cancer Care and Fred Hutchinson) made me feel that meant I was safe and taking the medication for 5 years was ok - that after 5 years the risk for bone loss was too high. He was wrong.
When I would complain about any SE I was feeling from the AI (armotase inhibitor) he would say things like "I have 70 year old patients who don't have any trouble". He never gave me another bone scan during all those years of treatment. I've since read you are supposed to have one every 2 years during treatment with an AI.
READ THAT PLEASE - scan every 2 years.
I fell just over a year ago. I suffered 2 fractures.
A few months later, a bone in my foot broke stepping out of the shower.
I BEGGED MY DR TO GIVE ME ANOTHER BONE SCAN. He kept insisting I was fine and these problems weren't from the AI. He even wrote an email to his nurse I happened to receive that said, "shes fine, her first scan was good, but we'll give her the scan since she's insisting". I didn't give up and he finally gave me a scan. My bone loss was 13-14% - osteopenia. And greater than that in my spine - osteoporosis. I was 38 years old. No treatment was offered to help and I was told firmly to keep taking the medication - it was saving my life.
Then I fractured a toe.
I stopped taking the AI that day. Against "doctors orders". I felt like I had to at least stop doing more damage to my body if there was any hope of recovery from the damage that had already been caused.
Now I've had surgery on my left knee because of increasing pain (after a fall during the time I had a broken foot bone). The fall was a year ago. They said nothing was broken and sent me on my way.
What I discovered in surgery is I had a torn meniscus and severe synovitis, which is swelling of the lining of the joint that builds up like scar tissue. The surgeon was able to clean that up and remove it, repair the meniscus.
Then came the scary part.
My cartilage is destroyed. The surgeon said its sunken in places the bone has weakened and looks like a jagged washboard. That isn't fixable. That means knee replacement at 39.
EDIT TO ADD PHOTO: This cartiledge is supposed to be completely smooth.
During the 3 weeks before my surgery, my "good knee" started sounding like it was full of gravel and giving way and having increasing pain. The consensus is, the same cartilage damage is most likely happening on the other side. My surgeon is sure it's from the bone loss caused by the AI. That means 2 surgeries on the other knee - one to verify the damage and the other to replace the knee.
The speed at which this damage is taking a toll on me is frightening.
I'm FINALLY on Boniva to try to regrow my bone - but not because any of my doctors or oncologist suggested it. Because I demanded to know if there was any way to fix my bones. It's too late for the damage to my knee joints.
I'm scared to death about what is happening in the rest of my body.
My neck joints now sound like they have gravel in them too. That started a week ago.
Its like that nightmare where your teeth fall out - and you keep spitting and more just keep coming out. (its one of the most common dreams so I hope you understand the comparison) but its real.
I've been crying for three days now. The appointments and surgery have put my job at risk. It's a new and small employer so I don't have any FMLA protection and I refuse to ignore my health just for a job, so that will be what it will be.
I feel we are being duped. I feel oncologists are scaring us into taking these medications and either not realizing the damage or turning a blind eye to the life changing damage it does to people.
If I could go back in time, I would NOT have taken any AI. I would have just left my chance of recurrence to the universe.
I'm facing a lifetime of debilitation for the "chance" to "lower my risk" of recurrence. When I'm in a wheel chair trying to recover from 2 knee replacements, and learning what's happening in my other joints, my oncologist is just going to be living his life without a worry about me.
P.S. I have a photo of the knee damage I'll find and post so you can see what I'm talking about.
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Cindy, I'm so sorry that you have suffered so. I have no words of wisdom. Just lots of HUGS!!!
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Thank you. I just hope my experience will help someone else be a better advocate for themselves. I should have done more research and not just blindly followed along with the oncologist. Sometimes our trust is too high. In this case, he made several mistakes that caused me damage. All that could only happen if I followed his lead.
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I'm so sorry. It's hard to stand up to doctors. We want so badly for them to know what's best for us. But he actually dissed you several times. They can be good at shutting patients down. That constitutes grounds for firinig them IMHO.
Your description of side effects is one of the things that makes me resist taking Arimidex. I had a bone scan today and I'll be interested in what it shows. .
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Cindy -
I am so sorry for the pain and loss that you have suffered. We all react so differently to medications and treatments. I have no experience with an AI yet - still on Tamxifen (51 and making some estrogen).
Please know that I would not mention this to cause you any pain or frustration. I mention it because one just never knows where one person's story might touch another.
A friend of mine from college (so also 51) has a condition that causes deterioration of his joints. It is called alkaptonuria. Since 2008 he has had all of these joints replaced: "Both knees. Both shoulders. Right hip." (Copy/pasted from one of his messages to me.) He has also had kidney cancer which is unrelated to the alkaptonuria. He is seen by the NHI every other year regarding this.
So this may have nothing at all to do with what has happened to you. But just in case -(Stranger connections have been made on message boards & social media.) perhaps you might look into it.
Diana
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((Cindy)) hey poetry sis, sorry it got so bad so fast. In your pocket for knee replacement. ♥
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Cindy your story just pisses me off. My oncologist had me doing a bone scan every year. I was already osteopenic before chemo. Now that I am on a bone building drug (Prolia) I get a dexta every other year because I was diagnosed with osteoperosis after 2.5 years on AI and chemo put me into chemo-pause. You will have the most bone loss the first couple of years after menopause.
I'm sorry this happened to you. I personally feel your oncologist was irresponsible not letting you know what the risk to your bones would be both on the AI and forcing you in early menopause. Even more remiss not treating the bone loss when you experiencing bone loss so quicky.
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Cindy, Did the Dr. put you on something like fozimax to help prevent bone loss? I'm very sorry you have had so many problems.
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Cindy, I can't believe that you were put on an AI without a bone building drug to go along with it. And then to not get ongoing bone scans to check on the state of your bones is terrible. I too am sorry you have gone through this. GG
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My oncologist did not put me on any medication to rebuild bone density - even after the scan I begged for showed significant bone loss.
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If you haven't done so already, I surely hope that you find a different oncologist!!!!!!!
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I've been taking arimidex for 16 months now and my MO has not recommended any bone builder. I'm not sure why--we did a baseline density scan last Jan and I was in great shape then. Is that a regular rx? Fosomax/boniva to accompany the arimidex?
I am so active (weight-lift, run, yoga, spin, hiking etc), and osteoporosis doesn't run in my family. My belief was that I'd just get scanned occasionally and decisions would be made at that time. At my regular check-ups no one seems to care much about bone loss; they just want to know when I had my last density scan, then we move on to other things. This latest development on the thread gives me pause, and if I had all those fractures and problems, I'd stop taking this damn drug too.
Claire
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I went in with my bones in a normal range, and came out the same way. Bone loss is certainly a possibility, but certainly it is not a given. Keep exercising, eat some prunes every day, get your scans..... don't stress about it unless an issue develops.
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Cindy, I am so sorry. What a nightmare. Definitely time for a new MO. That being said, bone builders are not a given with this drug. Most oncologists use them with caution as they have their own potentially dangerous side effects. Young people like yourself 'usually' don't experience significant bone loss. I am insisting on a bone scan every year which my MO indicated was the standard for anybody on an AI. I am 47 and two years post-menopause and have very mild osteopenia in my right hip despite being a runner. If I see any significant bone degeneration at my first recheck scan in December (after 10 months on anastrozole), I will be done with the AI. Just my personal decision. Wishing for healing and return to health for you. Please keep us up to date on how you are doing.
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laireinaz your bones should be monitored but getting the drug is not automatic. I was osteopenic before treatment (at age 49) small frame, Caucasian, family history and former smoker. Add chemo and AIs and that makes me the poster child to get osteoporosis.
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I was like Ruth, fine before and fine after but do confess that I upped my weight bearing exercises
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Sorry, I was thinking this was the bone mets thread. It's not automatic unless you have bone mets. My last bone density was really good, but I'm still on a pamidronate infusion every 4 weeks to rebuild bone tissue not because of anastrozole. GG
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Hello,
I have been on anastrozole since June 30, 2014.
I was wondering if anyone else had loss of appetite as a side effect from this drug.
I never get hungry and I no longer have cravings for any food. If I eat too much, I get terrible heartburn. (Too much is over 1800 calories in a day, I make myself eat at least 1100 calories a day.) I was obese when I had my mastectomy in April 2014. My BMI was 33. I lost over 70 lbs and my BMI is now 23.
I know most of you are probably saying you wish you had my problem. I was just wondering if the weight loss was a side effect from the drug or if there maybe something else causing it.
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Yes, I lost 25 pounds right away. Jumped ship and tried aromasin (exemestate) for a while, and 15 came right back. Back on arimidex, and adios to all 15. Love that (and only that!) aspect of the drug. If you are having reflux issues, that may be another culprit, and can actually damage your esophagus. I'd suggest a chat with your doctor about that issue.
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I lost my appetite when I started too. It has gotten better, but, nowhere near what it was. I guess I should look at that as a positive side effect since I can't seem to lose a pound. I work out at least 5 days a week and am trying to lose the 20lbs I put on after my diagnoses. I have only been able to lose 6lbs since December. My MO said it would be very difficult to loose weight on Arimidex. I wish I knew about this when I was drounding my sorrow in a daily half gallon of double chocolate chip ice cream!
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I was switched from Arimidex to Aromasin a week ago and the joint pain/stiffness is noticeably decreased. It's not gone completely but I can't expect that since I already had arthritis.
(I remember laughing a few years ago when the nurse started reading all the areas of arthritis after a bone scan; it went on and on and on... til I said "Wouldn't it have been easier to just tell me where arthritis WASN'T found?")
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Thanks BrooksideVT and SummerSun,
I must admit that as long as I don't eat too much, I enjoyed watching the weight come off. Unfortunately, I think I am getting arthritis so I will have to stop taking it soon. Good thing I didn't throw my fat clothes away yet.
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I lost 30 lbs during the first 9 months on Arimidex. I was on Femara for 5 days ., gained two lbs, Hurt like I was 100 and now I can't get my appetite turned back off!
Supposed to start back on the Arimidex on 4/12, abut the aches from the Femera have stayed with me.....DAMNNNNNNNN
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I've on been on anastrozole for about five weeks or so but I have noticed a decrease in my appetite as well. I'm pretty lean and can't afford to lose any weight but am hopeful that at least I probably won't gain any.
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Everybody on my medical team is cheering the 30 lbs lost. I need to drop another 30!Then I would be ideal for my body frame/height
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Nothing makes me lose my appetite except narcotics. They make me nauteous.
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Good luck to you redheaded1.
I feel like a fake when people congratulate me on my weigh loss. My kids have been following the weight watchers diet and are trying really hard to lose weight. They both lost quite a bit of weight. Then Mom comes along and loses more than them without any effort.
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