Concerned about the side effects of anastrozole

I have been on arimidex now for almost two years now...wad on tamoxifen for a year before my Onc switched me. As of lately...six months really bad joint pain and my hair has started thinning so bad I'm considering a really short boy haircut

Thank you so much for your reply. This support has already been so helpful. My Lobular Breast Cancer is highly ER+ (90%), so there's the culprit, therefore the drugs would be a great addition, if they didn't make me so sick. I'm a year in and I still haven't taken these drugs (the Letrozole and Arimidex) for more than 8 weeks total over a course of the year because of all of the side effects. I agree that quality of life is important and that's why I'm on the fence about this. My risk of recurrence is low but it's never low enough not to worry I guess, but on the other hand I'm concerned about missing the cancer if it comes back and having bigger troubles. My doctors aren't pushing the drugs strongly but I'm still trying to be a super-achiever I guess and do all I can. Being sick with all of these other issues due to the drugs has made this a very long year, too long.

Wow! Talk about being between a rock and a hard place! I had some of those side effects as well, but NOTHING like the ones you are having. Still I couldn't stand them and tried about 3 other drugs until I got on anastrozole. It has side effects but much milder, at least for me. I don't know who your docs are or where you are getting treated but you could also consider a 3rd opinion.

But honestly, if I were you, with the miserable quality of life you seem to be having, Stage I, bi-lateral mastectomy and no lymph node involvement ( although you didn't mention your HER-2 neu status or your estrogen sensitivity, which need to be considered) I would SERIOUSLY be thinking about chucking the post-hormone tx and taking my chances.

If your quality of life sucks, what's the point? That however, is a decision only YOU can make, and I myself wouldn't make it without talking to my docs about it first.

I've had TWO different types of breast cancer: triple negative, stage I in the L breast, the first time around - 11 years out on that one, and ER+, stage 1b in my other breast - 3 years out on that one. No lymph node involvement either time. Before I started anastrozole the side effects of the other drugs, even though no where near as bad as yours seem to be, were bad enough that I told my doc at Mayo that if there wasn't something else I could take my quality of life was bad enough that I wanted to consider skipping oral chemo and taking my chances (my chances of recurrence were also 15%).

Luckily we found something that worked better. I TOTALLY get where you are coming from. You are having to make a decision with incomplete information. There are NO easy answers here. I would just say, go with your gut.

Berit

Thank you so much!! I am going to try (as I call them my 'icky pills') again shortly and I will try this suggestion as well. I take the same supplements you do (and a few others) and will try adding the Glucosamine/chondroitin and Aleve. Glad it worked for you, hope it will do the same for me. Appreciate your reply and I hope to stay in touch with you on this site since our cancers are both ILC, stage one. It's nice to find a fellow ILC person (there aren't as many of us) !

I have been taking anastrozole since Sept 2016. I started right after I finished my radiation treatments. At first I was very tired all the time, not sleeping well, and my bones and joints hurt a lot. I was also emotional and depressed. In December, I saw my nurse oncologist and she told me to take 2 tablets of glucosamine/chondroitin (1500 mg) each day and an Aleve PM ( 1or 2 Tabs) each night to sleep better. I have only been using 1 Aleve PM each night and I really sleep good. My bone pain went away immediately and most of my other symptoms also disappeared. It was like a miracle. I could tell the difference in 24 hours. I haven't noticed any hair loss and I also take magnesium 1200 mg a day, a vitamin D, and Calcium. My cancer was ILC , stage 1, and I had a lumpectomy, and radiation. Doing well now except for some fluid build up in breast. Wearing a sports bra helps a lot.

Thanks. Even though I have Stage IV cancer, I feel really fortunate. I have great support from my spouse, good doctors and feel pretty good most days. I have lived most of my life (I'm 72) and I have a great deal of compassion for the young women who have this incurable disease and young families. I really don't know how they cope. Anyway, onward and upward!

Thank you for your reply and encouragement! I'm so sorry your cancer is as advanced as it is. It's been hard to have the level I have and I can't imagine your journey. Glad to have found support and hope I'll be able to return the kindness.

I was on Arimedex for 2-1/2 years with virtually no side effects. I have metastatic breast cancer so much different from you. No longer on the drug since it quit working for me. Two and a half years on the drug is considered a pretty good run. Best luck with your treatment. Your doctor will probably have other "bullets" so keep on working on it and you will surely come up with something that works both for you and your cancer.

I've just now found this group and have joined. I am one year into my 'adventure' with breast cancer (lobular stage 1). I chose a bi lateral mastectomy and luckily my cancer had not spread to my lymph nodes. I thought I would be 'done', given my aggressive choice to remove my breasts and felt lucky I had caught it fairly early, but my oncologists say I should use the follow up drugs. I have tried both Letrozole and Arimidex so far and both have made me very ill. Of course I don't want the cancer back (I have a 15% chance, which is pretty low) but I also find it impossible to tolerate these drugs. My side effects have ranged from severe depression, joint pain, blood in my stools and Shingles (twice....on my butt of all places, ouch). I am considering trying the Letrozole again but I'm having a hard time facing the side effects. I have hormone difficulties and have my whole life. These drugs just seem to throw me back into the horrors I experienced with menopause and more. I'm happy to have found a support group (that's a big missing piece for me in my recovery) and hope someone might have some similar experiences or thoughts on how I can reconcile two seemingly bad options as I move forward?

On Feb 2, 2016 I was diagnosed with IDC, Mucinous type. I had 2 separate tumors in the right breast. I elected for bilateral mastectomy with natural reconstruction, a tough but very satisfying route. I was then prescribed Arimidex. I took it for about 4 months and had multiple side effects that were intolerable: severe insomnia, severe mood swings, depression to mention a few. As a result, I was prescribed sleeping pills and anti-depressants. I finally said this is crazy and my oncologist took me off the Arimidex and put me on Femora. I also stopped the antidepressants and sleeping pills! I took 2 Femora pills, 1 each day, and had the worst diarrhea I have ever had in my life that lasted a week with stomach upset for a month. That ended that. I am now on Aromasin. I started with 1/2 tablet for a month. I will now add a whole tablet every other day for a month. Pending my reaction, I will then move to the prescribed daily pill, taken in the AM with a full breakfast. If this does not work, I will go back to 1/2 tablet and stay on that for 5 years!

I am very concerned about several things. First, the protocol is for women to take the prescribed dose-1 tablet on any of the three aromatase inhibitors daily for 5 years. It does not take into account if you are 5'2" or 6'2" tall. It does not take into account if you are 120 lbs or 350 lbs. It does not take into account if you are Caucasian, African American, Asian, Native American or from Mars. It does not take into account if you are 25, 55, or 75. It is a one size fits all protocol and my oncologist is not very sympathetic about me altering the dose.

I am one of the most blessed women alive. I did not have to have chemo or radiation. I could have had a double lumpectomy as my breast surgeon said given what I have and my age, (slow growing, rare-2%, that strikes women 68-72 usually BRCA negative), with radiation and be fine. I could have had the right breast removed and left it at that. I was quite large breasted so didn't like that option. I had 2 breast biopsies a week apart, a third biopsy the next week on my hip (negative for anything) and a sentinel node biopsy the forth week. I was done. I elected to have bilateral mastectomy as I knew I was never going through this again. If anyone is interested in knowing what "natural reconstruction" is, I am willing to tell you.

My whole point is that these protocols need to be worked out with your medical team and you need to be in charge of our own health. I found an exceptional book that helped me through my decision making and can't imagine doing this without it. It empowered me to decide and keep deciding based on my body and how I physically reacted to all of this.

Blessings to you all on this horrible psychedelic trip God is good and is holding my hand every step of the way.