For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Sorry I didn't make a copy of the prescription! I think you are correct on Bacloven. There is also 2% lidocaine. Don't know on the rest. I know some of the compounds have 5% lidocaine and the pharmacist mentioned that there are lots of docs doing compounds like this now and making them all different to hopefully match the issue.
I am wondering if this wrist thing is due to the AI. It has gotten better wearing the isolation thing, but the past that causes heart stopping pain is when the tendons roll. That will still happen and I dont know if it can be fixed without surgery which I am not planning to have. I see my ooncologist in May, so may ask if it is still happening. When the tendon rolls or moves, or whatever it does, it is like somebody sticks a knife. and then if it gets stuck in that place for a few seconds, oh my gosh.
On headaches, I have had what I consider to be the normal ones, but I have had a few that were over the top. For one, I was working at Macys that morning for a short shift. It got progressively worse, so I told them I was going to take a break and get a coke. Within five minutes, I was throwing up outside, and my head hurt so bad i couldnt decide if I had a migraine, a stroke, brain mets or a blown blood clot. Wrestled with going to the er, but it was marginally better after I threw up in the parking lot. Made it home, took an old zofran and and one of my daughters headache pills and fell asleep. When I woke up a couple hours later, it was pretty much gone, but I felt like I had been through the wringer. It wasnt my normal headache...it ran up the back leftside of my neck, deep into my head. I have not had it since, other than a sore neck in that area a couple of times. Switched up on a firmer pillow I was using and that helped. I do not want that again...I will go to the er if that happends again, as I have never been prone to have migraines.
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I had a compounded cream from Derma-Tran with about 6 different meds in it. I used it on my arm after ALND surgery. It had Ketamine, Gabapentin, Tramadol, among others. My BS sent me to a special sports orthopedic doc for it. I have since asked my PCP, my foot doc and others and no one seems to be familiar with these compounded pain creams. I wish more docs would be aware of it, because they can be very helpful.
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Tucker, sort of think my pal Tim would be happy to include Canadians in his study. PM with information.Thanks for the offer on the study. He is a real good guy, a tad of an over achiever but great! His last study was on LE and I had a whole bunch of names for him there!
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PTS send a PM, get your email out of that post!!!! There are bots who troll for emails and can make you miserable!!!!!!
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TessaW you should download these free pdfs. I went to one of their seminars. This is exactly the advice you need: http://www.cancerandcareers.org/publication_orders/new
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ok so I am reading all of these remarks and looking at most of the posters are positive for estrogen......I am required to take this medication for 5 years and I am triple negative.....any other triple negatives out there taking this medication for 5 years? Onc told me that I am classified as triple negative but still have 20% estrogen receptors....so he wants me on this for 5 years all kinds of bone pain from it and I am losing bone density.....would love to hear from any triple negative woman getting this same medication
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Well, I got plastered this a.m. My wrist pain was getting worse after the stitches came out and I didn't know if I had put weight on it while I was asleep, but I was scared to death something might have shifted, so I called this am. and asked to get x-rayed again. Evrything was fine, but Dr. K decieded a cast (his original thought) was the better option ot make sure I don't "overuse" the wrist with the brace. So it is Hot Pink....but they promised it would fade, right........
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doxie, proudto, I'm actually working for a school system.......
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Thanks for the articles Lago.
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Red, way to go! I'd love hot pink. But you're the one stuck with it. Hope it helps. Thank heavens everything was all right. I'd have been scared too. HUGS!!!
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ok so I am reading all of these remarks and looking at most of the posters are positive for estrogen......I am required to take this medication for 5 years and I am triple negative.....any other triple negatives out there taking this medication for 5 years? Onc told me that I am classified as triple negative but still have 20% estrogen receptors....so he wants me on this for 5 years all kinds of bone pain from it and I am losing bone density.....would love to hear from any triple negative woman getting this same medication
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ok so I am reading all of these remarks and looking at most of the posters are positive for estrogen......I am required to take this medication for 5 years and I am triple negative.....any other triple negatives out there taking this medication for 5 years? Onc told me that I am classified as triple negative but still have 20% estrogen receptors....so he wants me on this for 5 years all kinds of bone pain from it and I am losing bone density.....would love to hear from any triple negative woman getting this same medication
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hi, I just finished 5 years on Tamoxifen, yesterday started Anastrozole. First day, slight headache and slight upset stomach. I hope it goes well. My Oncologist wants me to take it for three years
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MJJones, welcome to our group. Hopefully, the small problems you have experienced are only due to your body adjusting to a new medication. HUGS and do well!
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If you are at all estrogen positive, then you aren't triple negative.
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Checota I agree with Ruth. 20% Estrogen is positive. I'm 30% Estrogen positive and my MO keeps hinting she wants me on it for 10 years. When I reminded her I was only 30% positive she said it doesn't work that way.
You can't be a little bit pregnant.
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RuthBru and Lago, Checota, said "they" had classified her as triple negative. She didn't say that she agreed. Often you have to go by what you are told. Perhaps there is a reason why she wasn't classified as ER+. Perhaps we should find out WHY they classified her as they did, instead of what we usually encounter.
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Lago...my new onc definitely feels more than five years. I asked the question that since I had been on tamoxifen for three, and then started AI, did I take the AI for two, to total five, or more. He said if it wasn't impairing my quality of life, he recommended seven for sure, preferable ten, but that we can evaluate at five.
I think I'm going to ask his opinion as to whether arimidex could cause this wrist tendonitis. I might try to switch brands to see if it makes a difference
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Hi,
I have ER+ 90% but declined Tamoxifen. My onc gave me Arimidex and I was supposed to have lupron with it because I still have a little bit of a period. I'm really sensitive to things and was nervous to accept an injection (can't stop meds if you get SE's) so she suggested I try the Ax for a month just to see how I felt.
Three hours after dose 1 I had a cramp go across one foot. It wasn't bad and was easy to ignore. Eight hours after dose 2 I was in bed with extreme pain wrapping around my middle and lower back. I do have a met in my lower back.
My hands, though not swollen, were completely stiff/frozen and immobile. Hubby had to replace glasses in our bathroom with plastic. I couldn't even pick those up and he had to help me eat and drink.
Twenty-four hours after dose 2 I was so dizzy I could barely stand and once again hubby came to the rescue, helping me into the tub and on and off the toilet.
It took 4 days after dose 2 for me to recover, but even a month after this experience, one of my hands is still mildly stiff, which I hope is not permanent.
Now my onc is refusing to try any other meds on me because she's worried about how I will react.
I'm on Myomin now, which my naturopath says is herbal Arimidex, among other supplements. I figure it's better than nothing...
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just did some research tonight on my wrist tendonitis (dequervains tenosynovits) which supposedly is what I have and what do I find? All kinds of info and people on AI that have the same thing! I do not want surgery. Wanted one year off. May have to move up my appt with my onc to discuss trying a different brand.
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HI, Cee. So glad you posted here. This is a very active thread and I hope you'll have lots of responses.
I wonder whether your rather extreme side effects could have been unrelated to the arimidex, just coincidentally attacking you just as you started the pill? There was a time when I read through each and every arimidex post (this thread alone has 8,346 posts). It's been a couple of years and I may well have forgotten, but while lots of us have reported various levels of unpleasantness creeping up over several months, I do not recall anyone recounting an acute onset of symptoms, or, in fact, any immediate symptoms at all. Generally, the pill works its wonders (pleasant or not) rather slowly as our bodies respond to lowered estrogen levels.
I think you could try the arimidex again, starting maybe with a half pill for a few days, and maybe asking for the non-generic version. I know you do not want to risk another round of pain and incapacity, but I think there is a good chance that another try will go smoothly, and maybe this is a risk it would be wise to take. I know I do not have to mention this, but the side effects of not taking the drug will eventually become highly unpleasant. If you have a return of the symptoms (and I sure hope you do not), I'd suggest hightailing it right to the ER and letting them figure out the exact source of the problem.
As the stiffness in your hands is still hanging around, maybe also you could ask your pcp to check into the possiblity of a carpal tunnel situation?
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Well, with the amount of chemo Checota got for her stage I diagnosis, I would say she had the treatment generally recommended for someone who is triple negative; but if she is 20% estrogen positive.....she is estrogen positive. You are not on an anti-hormonal if you are triple negative. You just aren't, it wouldn't do any good.
(I know this because I was initially diagnosed as triple negative & was slanted for ACT because of it; when they re-ran the pathology results, I came up being mildly estrogen positive.....which, for me, knocked the 'T' out of the chemo cocktail and added the 5 years of Arimidex.)
For people with tendonitis, have you ever tried splints, I know that has helped some people.
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fluffqueen01 - That type of tendonitis is also really common in people not on an AI. I had it in both wrists years before cancer treatment due to being a band director. A good splint for some time can help it greatly. I got a cortisone shot in the right hand, but never did that with the left when it popped up a few months later. I have no pain with them now at all. So, it is possible to help that type of tendonitis without surgery.
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I was diagnosed in March 2012 with Stage llb IDC with 8/10 nodes positive. I had a dbl mx in April 2012 with 8/10 nodes positive. I did cytoxan, adriamycin, taxol, and herceptin. Then I had about 30 rounds of radiation. Then I started 5 years of Arimidex. I started having uncomfortable hot flashes and night sweats. Then my joints began to hurt. My joints have continued to hurt since then. I have had multiple surgeries on my hands/wrists. I stopped taking the Arimidex for several months, thinking it would get better while I was off. Two months off did nothing. So I chose to start the aromasin instead. It continued to get worse on aromasin and the hot flashes got worse so I chose to go back on the arimidex. I am so stiff when I get up in the morning and it usually lasts about 1-2 hours. I have joint pain in my hands, wrists, both shoulders, elbows, hips, low back, knees and ankles. Basically everywhere. Before I was diagnosed, I had a couple joints that were injured riding horses that felt like they might end up with arthritis. After starting arimidex, every joint I had began to hurt. I think I would have ended up getting some arthritis just as part of aging, however, the AI caused a substantial jump in symptoms. I have erosive, inflammatory arthritis now that affects all my joints. I take the standard rheumatoid arthritis meds (gabapentin, sulfasalazine, and placquenil). I exercise about 4 days a week on the elliptical or treadmill. Another problem is that since I started the AI, I have gained about 45 pounds. I still work full-time as an RN. I am very stressed out between work, having this diagnosis, and multiple other issues. When does this ever stop?? It feels like I have gotten on a carnival ride and can't get off! I am getting every 3mos scans now for 2 lung nodules they are watching. At some point my QOL will possibly become an issue. BUT, I am managing to tolerate it right now. Has anyone had a similar course?
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Bottom line, I just turned 54 yo but I feel like an old woman.
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Nightnurse, I can sure relate. Gained 30 pounds so far, despite eating healthy and regular exercise. Joints hurting everywhere. General stiffness and pain. Feel like 91, not 51. And I was very healthy, active and fit before all this. Feel worthless now. But the fear of recurrence keeps me taking the evil drug. Don't have any words of wisdom for you, just tons of empathy. Have you tried megadose vitamin D? That's about the only thing that seemed to help a little bit.
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Me too Nightnurse. I'm afraid to get in abd out of the tub, and I am a 57 year old tomboy. Sometimes I need a cane. I'm going to try the Teva brand. Does anyone know if Target carries it? Does a pharmacy order Teva for just one person if requested? I'm in the process right now of tracking down the Teva brand.
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I get mine at Walgreens. The pharmacist said they have lots of customers who prefer certain mfg. target should be able to get it, you probably aren't the only one.
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Thank you Spookiesmom.
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Hi ladies, I'm going to chime in on the discussion about AI's and triple negative. One of my tumors was mixed; had both ER+/PR+ AND triple negative. So I had the six months of chemo and then started AI's for the estrogen positive. So there are indication for AI' in triple negative.
Martha
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