For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Yes, my opthamologist said the excessive watering/tearing is really an indication of dry eye it happens somewhat as we get older, but for us it is probably related to the chemo. I agree with Uago, get it checked out. Annoying.
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I guess I should find the Aromasin people since I got switched to that. 10 days now, so far ok and less stiff. Time will tell.
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Schatzi I've been on it for 21 months. My biggest drop was after chemo. I went into chemopause and was only on Anastrozole for 5 months when my 2nd dexta was taken. My drops aren't as big now but the spine is scaring me. Do note that I am small framed, Caucasian, mom had/has it, used to drink diet soda daily and former smoker (quit over 7 years ago). I'm the f*ckin' poster girl for getting it
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schatzi14 - I feel your pain, Sistah!
Even before BC, I had horrific fibromyalgia, degenerative disk disease, and spinal stenosis.
"Exercise will make you feel better!" ????? HAH!!!!
Then I found the therapy pool at our local rehabilitation hospital. The water is 94 degrees.... SOOO soothing on painful joints and muscles. Just walking down the steps into the water is pure heaven.
I found that in the warm water I can walk, run, jump, and move more freely than I ever could on dry land. I can even run in place to get my heartrate up, and never once have I felt it the next day. We even do resistance exercises with foam boards.
I haven't been back since exchange (pesky pinhole in left incision that refused to close in a timely manner
, and I have really missed it. But now I'm cleared to go back and I'm so happy!Is there a rehab hospital anywhere near you that might have the same program?
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Blessings...there is no rehab hospital but there is a program for seniors with water exercise somewhere. As soon as DH retires (Dec. hopefully) I will have the car and can seriously look into that.
I'm glad it's working for you...any regular exercise has to be a big plus!
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lago...I am (was 5'5 1/2")...now am 5'5"...that was a shock! I haven't smoked for 30 years and seldom drink soda.
Until I was in my 40's I drank tons of milk and was relatively active...then all that stopped. I had a whiplash that went untreated and have suffered from lack of exercise since.
I am starting the generic version of Arimidex tomorrow and hope for no SEs. The only one I really have now is hair thinning but I suppose at my age (69) it would have started anyways. Sure miss my dark (coloured) thick hair. I blame all that on Arimidex.
I need to see my PCP and get a copy of the report...I know the technician asked me if I knew I have a "crooked spine"...well NO I DIDN'T!!! That was all she would say. The MO never mention it other than to say take calcium.
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I switched from aromasin to arimidex in August 2012 after being on aromasin since feb 2012 and tamoxifen since August 2010. I have hamstring cramps from both but are better when I stretch and exercise.
Another issue I have is reoccurrent UTI's. chemo threw me into menopause and I have has 3 UTI's in 2 months. I am having a cystogram this week. CT scan of abdomen and pelvis showed possible remnants of kidney stones but nothing else. If I passed stones I sure didn't know it.
I am also noting I am less bloated and have lost weight on aromasin without really putting much effort into it. Seems when I was in aromasin I couldn't loose weight with trying.
Rayofsun0 -
Rayofsun...did you mean to say you have lost weight on Arimidex? I can always hope.
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I've been on anastrozole since March 2011 and in that time I've lost 80 lbs. I'm exercising a lot more and I've made drastic changes in my diet: no red meat, processed food, or dairy. I eat a mostly plant-based diet with small amounts of organic poultry and wild-caught fish. It helps that I've had only minor side effects, but the nurse practitioner I see for weight control says that the diet and exercise may be helping to reduce side effects. Or maybe I'm just lucky
. Since I'm on my third cancer and this one is stage IV, I'm due for a little luck.Janet
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my pcp put me on wellbutrin and my joint pain all but vanished. It was a life saver.
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my pcp put me on wellbutrin and my joint pain all but vanished. It was a life saver.
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I'll be seeing my MO later this week and I assume we will have THE TALK about arimidex or other drugs. Sigh.
For those who are concerned about who makes the generics/where they are made/and related issues, did you know that AstraZenaca has a program where you can buy the original drug direct from them for $40 a month. You can't use your insurance for it, but it may be an option for those who are wondering if it's the generic manufacturing that is causing problems. You can google "Arimidex patient assistance" if you want information about it.
My insurance will let me have the generics for $7 a month, so I imagine I'll try those first, but I'm keeping AstraZenaca's offer in mind....
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I will be starting the generic brand and it is made by Sandoz here in Canada...I read the "non medicinal" ingredients and there are 3 extra ones that the Arimidex doesn't have. I have 2 weeks of the Arimidex left before I start the generic...to buy the AstraZeneca med, it would cost me $341 for 90 days. If I have any problems with the generic, I will gladly pay the difference.
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I take the generic made in Canada, also, and didn't notice any difference after switching (2 months free from doc) from Arimidex. No major problems so far, achiness and pains of course --but I think I'm holidng them at bay with the cal/D3, D3, tumeric, glucosamine/condroitin etc. So far, anyway.
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Let's wish us luck...we are due for some
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Lumpy: Hot yoga is yoga basically in a room that is 105 degrees. Makes your joints more movable.
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Saw my MO this morning, and she was very pleased with my weight loss. She was also interested in any Anastrozole SEs, since I've been on it for almost 3 months.
I said that once in a while I had some stiffness in my right hand on waking up, and she said that currently they were offering two clinical trials on Anastrozole and joint pain - one using acupuncture, and one using Omega-3s. I said the stiffness was minimal and temporary.
I did say that when we went on vacation, I was losing hair like a Chinese Pistache tree loses its leaves all at once. I mean, there was hair in the sink, hair in the tub, hair on the floor, and especially hair in the white towels after I washed my hair.
But once I upped my Biotin from 500mg a day (started the day I started the Anastrozole) to 1,000 mg a day, the hair loss stopped.
She said it was cyclical, like during pregnancy. I might find that one or two days there might seem to be more hair loss, but once it gets under control it usually stops. I think the Biotin is really helping with that. I do have a lot of hair, so it's not noticeable....like thin or bald spots or anything like that.
Other than that, no hot flashes, no night sweats, and no other joint pain to speak of unless it's due to poor posture at the computer
or some other stupid injury I get.She was also very happy that I came on BCO to say that I did not have all the horrific side effects that members often post about.
She had asked me to do that when I started the drug. She said if I didn't have those awful SEs, could I please post about it so people know they are NOT automatic or inevitable, and the some patients do fine on them? I said I would.
(This is also the same MO who promised me if the SEs got too bad, and there were no alternate drugs, or drugs to treat the SEs, and my QOL suffered, she would be the first to tell me to stop them.)
I'm doing well enough that she doesn't need to see me for six months. (But I can email her or make an appt to see her if need to.)
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Blessings I agree with your MO. I was more scared of ESD than chemo based on what I read on these boards … and here I am with some stiffness that I can live with (still doing 60 lunges and 120 squats every week) for a few years. This isn't so bad.
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Once I decided that I NEEDED TO DO the treatment options I choose, I closed down the computer and didn't come back on for a year.
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I didn't come here either until after treatments except for Arimidex! I am not sure if it was a wise choice or not...I didn't feel the need to talk about treatments until it was all over (chemo and rads).
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Blessings, do you have any info on the trials you mentioned? I would love to try either, especially the accupuncture that my insurance doesn't cover.
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I saw my RO today and had an interesting talk. I was explaining the joint pain to him. He did say it is normal for it to increase in cold weather. The best part was he told me he may keep me on it for just three years. I asked him about some of the newer studies that keep people on it for 7-10 years. He said he believes the most benefit from Arimidex occurs in the first three years. He said he is pretty sure he will feel comfortable taking me off it after three years. I can sure live with that!
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I noticed from a UK survey for something else, that significant benefit from Anastrazole at 2 years. So not surprised that major, major at 3. The real answer is that we just don't yet know the optimal time period.
I have minimal side effects and this is just past the half way point. Major SE from having banged my little toe from an attack of doofusitis earlier this week. Ouch! Slammed it into a chair making my bed.
I am so glad that we have this option available. I will definitely do a therapy that increases my chances of making it from something like 78% to 86%. No question at all.
Fortunately, I am just fine. Yes, I do have some minor SEs, but nothing I can't put up with.....slight metallic taste, a bit of knee soreness. not sure about anything else. I live a rich and full life.
Having said this, I really think my commitment to exercise throughout has made a major difference. Plus a boon for the rest of my health/active life.
Off to bed now as ready to crash, and am running out of week before I run out of work! - Claire
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Chris13 - Sorry, no, I don't have any info on the trials, but I will email my MO and ask her.
They may be in-house (Kaiser), or they may be part of a larger study. I'll find out.
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Claire I agree that exercise helps, and I do plenty but I'm still stiff. Now that it's getting colder it's a bit worse. Granted still doable but I'm looking forward to getting off this stuff. It has also thinned my eyelashes & brows. A little receding has started again on my hair but holding on since I am using Minoxidil. Meds and I never really got along. That's why before diagnosis I was pretty much Ibuprofen for menstrual cramps and Exedrin for the occasional headache only. Even antibiotics and I don't play well together.
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I'm a new member and this is my first post so bear with me please! I was diagnosed Sept 27, 2012 with lobular invasive left breast. My cancer was missed 3 months earlier with mamogram and ultrasound. A different radiologist, searching for the cause of pain that was unrelated to the cancer was relentless with her ultrasound. 8 mm with a small satellite. I was offered lumpectomy, radiation and chemo but at 57 didn't want to live under that cloud. I had a mastectomy October 15th. Lymph nodes were clean, stage 1, OncotypeDX score of 19 so no chemo. During these past two months I have felt truly blessed every step of the way and know how very fortunate I am. My Great Weapon for my attitude has been my odd sense of humor. Yesterday I saw my HO for the first time and will start Arimidex tomorrow for 5 years.
I was on estrogen for 15 years, post-hysterectomy and discontinued the day after diagnosis. Withdrawal was bad but my body has adjusted some, I found soy milk has helped. I already have pretty serious joint and muscle problems requiring tramadol at times. Looking forward to revisting this forum and reading your posts in greater detail.
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9redheadaz welcome. ILC and LCIS can go undected in mammos and US. My LCIS was only found in the MRI (small amount in the "good breast") Kudos to your radiologist regarding the pain. I had complained about pain 4 years prior to being diagnosed in my IDC/DCIS breast. Was told it was connective tissue and not to worry… fast forward 4 years… 6.5cm tumor!
Hope they can control your SE if you have any.
HO? means hore. I call mine MO or onc.
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9redhead...welcome ....hope we can be of some comfort and add to your sense of humour.
As for the soy milk...I would ask your MO about that as I believe it is not advised for ER+ patients.
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lago -
Hi, 9redheadaz, and welcome to the forum!!!
My story is very similar to yours. Mammography completely missed my IDC and DCIS.
I suffered with horrible joint and muscle pain for years, thanks to fibromyalgia. I had a standing order for Vicodin.
But in March, I entered a medically-supervised weight loss program (at the urging of my MO) to drop 60 pounds and rid my body of the excess estrogen the belly fat was producing. I am 100% ER+.
A funny thing happened along the way: my fibro pain went from an 11 on the pain scale, down to a 2 or 3. Not because I had lost the weight - it was early in the program - but because the diet was gluten-free.
Many women with AI joint pain find that limiting gluten helps with joint pain.
Also, even though my MO says not to worry about the small amounts of soy in products, she prefers that I not drink the soy milk that I used to consume in great quantities. I switched to Lactaid.
However, your post doesn't say that you are ER+, so I would just ask your MO to be on the safe side.
I've been on Anastrozole for 3 months. So far, only very minimal SEs
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Hi All,
Glad to say hello again! I see many familar names of folks that I started this journey (2 years on AI as of this February!). I have been off busy, but want to share some of the things that I have learned along the way. After a year and a half on Arimidex, (and many side effects including very pronounced joint pain, carpel tunnel,etc ), I switched to Aromasin (exemastane) and have been much more comfortable. Apparently, joint pain is much more common on arimidex than aromasin so folks who are really uncomfortable on one should definitely think about switching to another!
My one challenge since switching has been a lot of weight gain ( maybe Arimidex help surpress my appetite or I just got further out from diagnosis and started celebrating too much!) In any event, add my name to the list that went gluten free (just 2 weeks ago) in an effort to lose weight and got the extra benefit of less joint pain. Really notice that my joints are less stiff. Of course, the fact that i am eating less is also helping with bloatedness,etc.
I always appreciate people's wisdom and practical advice on this site. Wishing you all a s/e free day!! Best, Beau
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