Side effects on Aromasin, now Arimidex, now what?

Options
LisaG61
LisaG61 Member Posts: 17
edited August 2014 in Hormonal Therapy - Before, During, and After

I have had SE's on both of these meds, now what ?  I am only 7 months on these meds, anyone else have this issue /  Thanks

· Share on FacebookShare on Twitter

Comments

  • Lou10
    Lou10 Member Posts: 332
    edited June 2014

    I've had bad SEs on Tamoxifen, letrozole (Femara), and exemestane (Aromasin). The SEs were different on each of them, and worse at different times (e.g., immediately or delayed). And everyone reacts differently.

    I've actually just stopped exemestane, but I'll probably go back on it or something else when I see my MO in three weeks. He won't be happy with me for stopping, and I'm nervous not being on something. Yet I know hormone tx (or any other type of cancer tx) is no guarantee, and I feel I haven't started living my life again because of these drugs. If my cancer wasn't node-positive with strong ERs, I don't think I'd consider going back on hormone therapy as it's toxic to me. But I haven't tried Arimidex yet so maybe that's what I'll do. I'm also going to talk to my MO about taking periodic vacations from the AIs (I can imagine his response), or maybe even rotating the different drugs since the SEs I have are a bit different on each one (this may be a bad idea, but I'm grasping!) 

    I see you haven't tried Femara. What about doing that?

    · Share on FacebookShare on Twitter
  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2014

    I switched to exemestane after the anastrozole SE became too much.

    It is ok I guess still have some of the achey symptoms.

    · Share on FacebookShare on Twitter
  • babsjean
    babsjean Member Posts: 1
    edited June 2014

    I have been on arimidex for just over 2 years now.  The weight gain is hard to accept but more difficult is the increasing joint and muscle pain.  I take fish oil 3000 mg twice a day which greatly help the hip pain.  The groin pain and thigh muscle pain is becoming unbearable.  I have ridden horses since 1981.  I have now reached the point where I can bearly get on my horse and every step brings nausea and tears.  My cancer was Stage I, ER positive. I received 6 weeks of radiation.   I have 6% chance of reoccurence so did not receive chemo.  I am seriously considering discontinuation of arimidex but would I be foolishly risking reoccurence?  My oncologist barely attempted to answer my concerns and told me to stay on it.  My bone density is worsening.  I hope my endocrinologist will be more willing to discuss risk vs benefit of arimidex.  Any thoughts out there?

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited June 2014

    babsjean, Welcome to the BCO community. We see that you have not had a response to your question yet but please know that you have joined a knowledgeable and supportive group that can be very helpful as you journey through breast cancer and its treatments. If you do not receive responses in a timely fashion you may consider starting a new topic and asking your question directly. Please keep us posted and thank you for connecting to us. The Mods

    · Share on FacebookShare on Twitter
  • cowgal
    cowgal Member Posts: 833
    edited July 2014

    I have tried them all.  I first started on tamoxifen and was on that for about a year until I had a blood clot and thickening of my uterine wall and bleeding that my gynocologist and medical oncologist said I needed to stop the tamoxifen and required an  immediate oopherectomy.  After that surgery, I was put on arimidex and started having severe joint pain.  I was on that for about a year.  I was then switched to aromasin and the severe joint pain continued.  Last October I was changed to femara and still had the severe joint pain.  I have been given different other drugs to deal with the pain, which is worst in my knees.  I have not been able to ride my horses since April 2013 due to the pain mounting, riding and dismounting and that was with using a step ladder to get up and down.  Yesterday, I saw my MO and told him that I didn't think the Celebrex was helping at all with the pain and he told me after 4 years of taking all of these drugs that I need to come off of them.  So today is my first day not taking any of the tamoxifen or AIs.  LisaG61, I tried desperately to make the 5 years but I could not.  I do not know how bad your SEs are but I was willing to put up with a lot of them except the severe joint pain and quite honestly, I thought I was going to have to keep limping for another 11 1/2 months to make it to the 5 years.  You can still try femara and see if you do any better with it. 

    · Share on FacebookShare on Twitter
  • beau
    beau Member Posts: 374
    edited August 2014

    Hi Lisa,

    I am sorry that you are having so much trouble! We all have our own journey and some parts are harder than others. I am now 4 years into the AIs ( 2 years on Arimidex and 2 years on Aromasin). I found that the first 6 months were a living hell - just so much joint pain and the blues. I was very discouraged. For me, I felt it was important to keep at it (have younger kids) so I took pain medications and kept moving with exercise. I finally thew in the towel on arimidex and switched to Aromasin, which definitely improved my joint discomfort. At this point, I am doing well with occasional flares. I find that taking lorazapam and claratin (of all things!) and NSAIDS dampen the side effect enough that by now they are back ground noise. I feel good and positive. 

    Just because my journey worked for me, I do not mean to imply that  the same path is the right one for you. I just want to say that trying different things - not just different AIs but also different pain meds, anti-depressants, etc might make things more manageable. Also, time out from active treatment really helps. Did you have chemo or radiation? 

    I realize now that much of my exhaustion was related to the after effects of chemo and my blues were partly related to the Arimidex but also I was sad that I could not be the "old me". I had anemia and my muscles were atrophied from the effects of chemo (despite lots of walking and yoga during chemo). 

    In any event, best wishes to you. Whatever you decide, I hope that it brings you peace. 

    Best, 

    Beau

    · Share on FacebookShare on Twitter
  • aviva5675
    aviva5675 Member Posts: 1,353
    edited August 2014

    Ive been doing well on generic aromasin sine Sept. Note that there are at least 2 active threads on aromasin/anastrazole that talk a lot about se, generic vs name brand, etc..

    · Share on FacebookShare on Twitter
  • NancyD
    NancyD Member Posts: 3,562
    edited August 2014

    I've been on anastrazole for almost six years, now. The initial SEs, when it was the branded Arimidex, were on the mild side and went away after a couple of months. By the time my prescription was changed to generic anastrazole, I really couldn't tell what was an SE and what was just the process of getting older.

    In January, my insurance coverage changed, and with in my prescription provider. My first dose of anastrazole from them started at the end of April. And with that, the SEs started all over again, and worse than back in 2008. The SEs I've been having are random muscle and joint pains, and a propensity to throw my back out at the slightest thing. (Last thing that did it was flipping the pillows on my sofa one morning.) So far, I've been able to handle most of it with some ibuprofen, but one night my legs ached so badly it kept me awake despite the ibuprofen. I suspect the manufacturer changed along with the prescription provider.

    I've just got a new batch of anastrazole (I get 90-day supplies), and will see how it goes. If things aren't better when I see my onc at the end of October, I may ask for a change in hormone treatment.

    Anyone else experience a variation in SEs when there was a change in manufacturers?

    · Share on FacebookShare on Twitter

Categories