For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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wishing you relief lssilady. chronic pain is no fun at all. i hope you find answers, and ultimately, help. thinking of you.
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I had my 6-month mammogram and followup exams yesterday (4 of them) and all checked out fine. I have been cleared to go once a year now again on mammograms instead of every 6 months. All blood work was fine and physical exams went well. I did ask the question if generic arimidex is as effective as brand prescriptions and was told twice yes it was, and sure is cheaper. I pay $25.00 for 90 pills, 3 months, so that sure is affordable but then I read that there were questions on the effectiveness of generic pills. My breast surgeon assured me yesterday that they are as effective and that her mother was taking the generic kind, so that was reassuring. I had some itchiness of my good breast but she felt it was a combination of winter dry skin and arimidex. All appeared fine on film and in fact my breasts have become less dense even since 6 months ago. That can be attributed to age but the last time they felt a need to do an ultrasound because of my dense breasts. I still will need a followup exam with my oncologist in 4 months and my breast surgeon in 8 months but, if all goes well, won't need a mammo until next January. I was a basket case prior to the first two appointments but when they went well, I started to relax a bit for the last two. Though I am greatly relieved today, I still will not become complacent about this disease and will not take anything for granted. So far, I have been lucky with not much pain on Arimidex. Hope that continues and hope those of you experiencing all this pain can find some relief and help. Good luck one and all.
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Allagashmaggie Less estrogen is a big contributor to saggy, less dense boobs. So it sounds like the Anastrozole is working.
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Hello ladies
I have been taking Arimidex for almost a month and was feeling pretty good apart from what I considered to be a few minor irritations (itchy skin, mild constipation, feeling a bit tired.)
However, I got a bit of a shock yesterday when I went for my first DEXA bone density scan. In brief, the results are normal according to the WHO scale but...
The radiologist told me that a backbone - L2 on the breast cancer side - is showing signs of osteopenia (softening of the bone - sometimes a precursor to osteoporosis).
I am not sure now whether to continue with Arimidex or not as one of the side-effects listed on the packet is the possibility that it might 'lower the mineral content of your bones', which is osteoporosis.
It may sound a bit silly but I am also wondering whether the osteopenia is a sign that the breast cancer has spread to the bones.
Does anyone have any experience or knowledge of this being a sign?
In addition, my oncologist said that with my stats (ER- PR+ HER2+) there is only one-third of one percent benefit for me (one woman in three hundred).
I've also been feeling very tired and a bone in my left foot seems to have grown overnight and become inflamed.
Tamoxifen is not possible as I developed blood clots while on the chemo.
So, ladies, what do you think - should I continue or not?
Thank you for considering my questions. I'm feeling a bit shaken.
Kind regards
Alice
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Alicethecat I had a bone density test before chemo because I am small framed, Caucasian, family history (mom), former smoker and former diet soda drinker… all risk factors for osteoporosis. I was found to be slightly osteopenic. I was already taking more vitamin D but my onc also has me taking calium. After chemo, being tossed into chemopause and 5 months on Anastrozle I was tested again and it got worse but still osteopenic. Tested a year after that and still osteopenic although my spine is getting close. In about 1.5 years I will probably have to go on a bone building drug. My ER is 30%, PR is 5%.
I've decided to continue and hope to make it to the 5 years. I think you need to discuss the risk/reward with your onc. But do understand that ostoepenia is not osteoporosis. Sounds like you were just slightly osteopenic.
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Alice - I had my first bone density test years ago...way before my BC dx. It showed I had osteopenia. (Mild bone changes that are a precursor to osteoporosis.)
I stepped up my calcium and other supplements, did more weight bearing exercise, and refused the bone-building drugs my doc wanted me to take.
After I was dx'd with BC, my MO prescribed Anastrozole, but first, she did another bone density test. Guess what - the results had not changed in the years since the first one. I started taking the AI last September.
I still don't plan on taking any of the bone-building drugs unless subsequent tests show I definitely have progressed into osteoporosis.
I am 100% ER+.
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Alice my story is almost identical to Blessings. I am wondering why you are even taking arimidex as I have been told and read it wasn't for estrogen negative bc. a lot of thin women develop osteopenia where heavier women don't due to weight bearing being good for bones.
Damned if you do and damned if you don't it seems.
my oncologist said she wanted to wait another year before testing me again but she also told me that research is showing that some bone building meds can also help to prevent breast cancer. Good luck.0 -
Lago, thanks for bringing that to my attention, that the hormone pill must be working because I am getting less dense and saggy. Who would have thought I would love the fact that my breasts are "saggy." Because I have so few side effects, I worried it may not be working on me but I guess I am just lucky (so far) and basically other than feeling warm and sweaty a lot, I am handling SE okay.
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Alice....you are the first person who said they had developed blood clots while on chemo. I also had the same thing and had to inject myself each day with blood thinners for 6 months. Ergo no Tamoxifen for me either. I have very few SEs on Arimidex especially after a few months.
I also showed osteopenia after a year on Arimidex but I refused any meds. I will see how it goes with my next DEXA. I did start to take calcium with Magnesium and D3.
There is a study that shows that eating 8 to 10 prunes a day REVERSES bone loss. I do try to remember to eat them but I usually forget....just a thought!
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WAIT!!! Where's Ruth? She our resident Prune Guru.
I'll bet she can whip out the sources of those prune studies!!!
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Did someone mention prunes? Yes, eat a serving every day. They are great for both bone and colon health. Also daily weight bearing exercises that pound your bones (walking, running, zumba etc.) and lifting light weights all build bones. The key to all this is the word 'daily', not just once and awhile.....sigh!
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Need to try the prunes again. Last time they bothered my stomach. I do the daily exercises and I am still losing bone mass. Maybe it would be even worse if I didn't but sometimes some of us will still need assistance with the bone building. The prunes are the only thing I haven't tried yet… or been eating them long enough to make the difference. I really hope my digestive system can handle them daily. I have IBS so some things bother me.
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Lago, Blessings, Allagashmaggie, Schatzi
Thank you so much for replying!
It has helped enormously to hear about your experiences.
Sorry if I caused any confusion re osteopenia. I know it's not osteoporosis yet, so thanks Lago for pointing this out.
http://www.webmd.com/osteoporosis/tc/osteopenia-overview
Will follow your progress with Arimidex. Hoping that the Vit D helps!
My onc said that as my bone density scan was normal according to WHO definitions, I shouldn't worry too much. He said that even if the results dropped by 5% - which he thinks is reversible with the correct diet - I would still be within normal results. Phew!
However, Blessings, I'm tempted to go down your route if things do get worse. Not a great pill-popper either - but I know it's a sensible option for some people.
Allagashmaggie, my onc wants me to take Arimidex because he says that the medical community do not understand how all the pathways that drive breast cancer work.
It could be, for example, that progesterone has a role to play in driving some types of breast cancer.
http://scienceblog.cancerresearchuk.org/2011/06/24/a-tale-of-two-hormone-receptors/
Interestingly, Arimidex stops androgen teaming up with progesterone...
Shatzi, my commiserations re the injections! Sorry you had to go through this as well. When I looked up the stats, it seems that this only happens to a tiny percentage of people. We were unlucky, I guess!
I did three months of daily injections followed by six months of warfarin pills - in fact, they continue until March 8 so nearly finished now.
Thank you so much for telling me about your experiences re Arimidex a few months on. That gives me hope - and a great desire for prunes for traditional and hopeful reasons regarding any reverse!
Ladies, thank you so much. Your comments, combined with a pretty good full blood count, have made me determined to crack on with the Arimidex again.
Best wishes
Alice
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Hi girls! I was reading through the posts to see if anyone else had more joint pain and/or back pain while taking Arimidex. Apparently so! I was on Tamoxifen for 20 months until my ONC switched me to Arimidex because I had hit the 2 year mark of no periods. In the last week, especially, I'm having a rough time walking my dog (she sometimes pulls) and my lower back begins to ache like a toothache and the remainder of the evening is all downhill from there. I work in a school with 3 floors and I switch classes with the student I coach (he is on the autism spectrum) and have also noticed my knees becoming "crunchy" and sore. I'm 52 and not ready for a rocking chair! Any suggestions would be appreciated!
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If you just started you need to give it some time. I felt a little 'crunchy' right away too, but just kept moving in spite of it, and my body adjusted after a couple months.
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Thank you, ruthbru! I hope I adjust as well as you did!
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I teach special education too, so know how much 'up and down' that requires!
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ruth and many others, good to meet you on this site. I had my last chemo (Taxol) last Tuesday, have my next surgery March 5 and start Armidex on March 8. Thanks to kjiberty for heading me to this thread. I have read a lot of the many pages and feel better about the start.
But ruthbru, I have to say I will be waiting awhile before I start with more than a prune or two a day. I had way more of the diarrhea than the constipation more with A/C but also with Taxol and will wait until I think things are closer to normal before I eat many prunes!
So onto yet another relevent thread~~much as I appreciate my chemo buddies I need to soon move on...
Thanks Nancy!
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Hi Mariane! Hooray for being done with chemo! Yes, save the prunes for now......one thing at a time.
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Hello ladies
To those who have asked why my onc put me on Arimidex even though I am ER-, the answer is that he says that the medical community does not understand all the pathways that drive breast cancer.
It could be that progesterone and androgen also have a role to play in driving some types of breast cancer.
In brief, the University of Cambridge has a theory that the androgen receptor teams up with progesterone via a protein called FOXA1 and acts as a skelton key and takes over ER cells.
scienceblog.cancerresearchuk.o...
Unfortunately, it appears that I may have had a reaction to Arimidex. One of the chemo nurses noticed that I looked very unwell when I went for Herceptin, which I'm also on, on Friday. I felt so tired I thought I was about to pass out.
She had a chat with my oncologist who told me to come off it straightaway. We're going to have a chat in three weeks to see if I can try another one.
Before I was diagnosed with breast cancer I was never good with pills - allergic to penicillin, got itchy skin from various antibiotica and had asthma.
Think I was just unlucky with Arimidex.
I keep reading good things about how effective it is in preventing recurrence so please don't let this put you off.
Best wishes
Alice
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Alicethecat sorry about the reaction but I too am allergic or have had bad reactions to several drugs. I'm allergic to ampacillin (rash, means I can't take penicillin) and a few others have caused issues. So far I'm good with Anastrozole so I bet there's a AI out there for you.
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Alice ..don't despair...there are many alternatives!
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so frustrated at times muzzy thinking.....must be side effect from taking Arimidex as i wasnt like this before. Finding this difficult at work sometimes as in a supervisery position, Ahhhhhh
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Thank you, lago! I will try again! PS I love your sense of humor! I have been away from this conversation as my sister was ill and had a premie! Mother and baby are doing great now - but I was the NICU mom and caregiver for her two older children! My sis has been diagnosed with Crohn's disease. What a challenge for a young mom! Anyway, thanks for the advice! My hair looks like he**, but in the big picture, who really cares! I will certainly take your advice and try your suggestions! Much love and hope to all on this site! We are all survivors!
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Lago and Schatzi
Thank you so much for your comments!
Interesting re your allergy to ampacillin, Lago, as I too am allergic to penicillin.
I see that the Royal Marsden is having success with Letrazole and Lapatinib for people with mets. Fortunately, that is not me at the moment but I will discuss with my onc.
Best wishes
Alice
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Interesting...I am allergic to penicillin, as well as all the rest of the "cillins", plus pretty much all other broad-spectrum antibiotics, and all sulfa drugs.
Clindamycin is the worst!!!! I broke out in a rash...head to toe!!! I am also allergic to guaifenesin....an ingredient in most cough syrups. Go figure. (But I was o.k. with IV and oral Cipro with my surgeries...)
So naturally, I assume the worst when I take new drugs. I always take them in the daytime in case I have a reaction... and I have maximum-strength Rx antibiotics in case I do.
They say if you react badly enough to a drug to break out, there is always the possibility that you may have breathing problems the next time you take that drug.
Fortunately, I had no problem with the Anastrozole!!!
I am noticing more joint pain, but like I said, I haven't been exercising. And it comes and goes... today I came home from an appointment and could hardly walk once I got in the door. My hip felt like it was out of the socket! That REALLY hurt!
But I sat in the chair in DH's man cave and whined to him for a while, and when I was done, the pain was gone. Oh, Lucky DH!!!!
Now I know what to do when my joints ache!!! 0 -
I am allergic to penicillin, as a youngster I broke out in hives.
As an adult, I developed an allergic reaction to both aspirin and ibuprofen (Advil, Motrin) having trouble breathing when I took them. It also eliminates my being able to take NSAIDs like Aleve. I asked the allergy doctor why had I been able to take them when I was younger, and he just said sometimes it happens. I later read that stressful times in a person's life may have something to do with the development of the allergy. I have no idea how true that is, but I had been in the midst of much stress at the time.
Also, not being able to take ibuprofen made me wonder how that contributed to bc since it's an anti inflamatory. All I'm able to take is tylenol/acetominophen.
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I am allergic to penicillin, ertheromycin (spelled wrong), sulfa, bactrum (spelled wrong too, I'm sure), ....you name it in the antibiotic world, and I have a problem with it. Can't even use any of the triple antibiotic creams for cuts. That being said, I had no problem with arimidex....so allergies to one class of drugs doesn't necessarily mean you will have trouble with others.....thank goodness!
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I'm allergic to penicillin and broke out in hives in high school but believe it or not - after answering that question numerous times before my BMX they supposedly gave it to me in the IV during surgery!
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I was allergic many decade ago and had a severe reaction then following surgery. But a few years ago I tested the theory and a pharmacist explained that it may have had to do with the other fillers/ingredients way back then. I have now had ampicillin and others since (including Sept. lumpectomy) and no adverse effects.
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