Mayo Clinic Connect
I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?
Liked by coquimti, Molly MIller, farmgirl1556, kathyomaha55 ... see all
I wish you all the best of luck making this decision. After 3 weeks on Exemestane, my hands feel better. (so It's been 4 weeks since I took Anastrozole). They also told me 5 to 10 years on the drugs. But I'm only 64 now & just passed my 1 year mark. I hope the doctor has a frank talk with you about your side effects and your chances of recurrence. You have to trust them, even though it's scary.
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I am 68 now and went off anastrozole after a short periods of time and letrozole due to the severe bone pain. My doctor let me take a break and then started me on exemestane…what a difference. I can now walk without severe pain in feet and ankle, elbows, hands, etc. I have recently switched from taking it at night and now take it in the morning. I was having insomnia after sleeping 2-3 hours. Now that I am taking it in the morning, I sleep 7-8 hours a night…hoping that will keep up! I also go to therapeutic water exercise twice weekly and find this helps with arthritic pain.
Liked by Kanaaz Pereira, Connect Moderator, elizm, lisman1408, sparklegram ... see all
I have just returned from my 6 year post op appointment. I had a clear mammogram ! I initially was going to talk about coming off the Tamoxifen as I have now been on it 6 years. My worry was it would affect my bone density. At my appointment I learned that contrary to my belief, Tamoxifen can help prevent bone loss. The standard of care has been 5 years but there seems to be evidence now that 10 years of therapy is better. For that reason I have decided to remain on the Tamoxifen. I am fortunate that I really have no symptoms or side effects except possibly some hair thinning which may or may not be related to the drug. I will be 68 in December and there have been family members that had thinning hair as they grew older. My daughter is an NP and says "stay on the Tamoxifen" and get a wig if you have to ! Lol I think she wants me around a few more years. I will be having a bone density in January and will be anxious to see the results. I had mild osteopenia in my spine only before so hoping I have not had any increases of bone loss.
Thank you for the update and your good news. Please keep us posted about your bone scan. I am just seven months on Anastrazole. You give me hope!
I was on Arimidex for over a year and a half, and finally the side effects became intolerable for me. I understand this is not true for everyone. After 9 weeks off the Arimidex, my Oncologist switched me to Exemestane . After 2 weeks, the side effects of the Exemestane became similar to the Arimidex. Again I'm taking a month's break and have an appointment with my Oncologist in December. I'm 75 and trying to decide if I want to stop the drugs altogether or try Tamoxifen. I have osteopenia and moderate to severe arthritis in multiple places. I'm hoping my Oncologist can help me with my decision.
Thanks for sharing about your journey. As you will know from this group there are four or five options for estrogen blockers, so i hope you can find one that works for you. Please keep us posted. Denise
Liked by Kanaaz Pereira, Connect Moderator, sparklegram
i was on anastrazole for 5 days and Mayo had me stop it completely the side effects were very severe. i was quite nervous about taking other aromotase inhibitors because my reactions were so severe. They started me this year on Faslodex, which is a monthly shot. thus far my reaction is fatigue the day of the shot and a sore tush as it is a thick shot. tylenol helps to relieve the pain and my tush only hurts for a day or two. somewhat new on the market, but it works for me. upside is it only once a month. downside is that as i am so sensitive to estrogen that i must get it every 28 – 30 days. for those of you who take aromotase inhibitors it may be worth looking into this if your side effects are not tolerable.
Liked by trixie1313
I have been an active member of this discussion for quite a while and so I thought I'd share here a new complication I am experiencing with my breast cancer 'recovery'. First, yesterday was my four year anniversary of my bi lateral mastectomy and I'll have my check up in December and hope that I am four years cancer free…..that's the good news! Unfortunately a little over two weeks ago I got cellulitis in my left hand (from a tiny, itty bitty cut) and I went into sepsis. I was hospitalized for 6 days on IV antibiotics and released on a long term IV antibiotic. I am allergic to antibiotics, so it's been a huge challenge. Every oral antibiotic they add to help my recovery (which is slow at best to kill the infection) has sent me to the ER with an allergic reaction.
The cellulitis is in the left arm that had some very mild lymphodema (that the doctors were very slow to acknowledge due to the fact that only one lymph node was removed during surgery). I thought I had the lymphodema in decent control after a scar revision surgery 3 years ago, but I think maybe not.
Anyone experience cellulitis or sepsis from lymphodema or? I'm finding it hard to get more information or support (and the doctors are of course focused on killing the infection and struggling somewhat). Looking for input wherever I might find it. Thanks!
Liked by kathyomaha55
I haven’t had that happen, but it is precisely the kind of problem that I’m on constant vigilance about. I am 3 years post-bilateral mastectomy— congratulations on your 4 years! My cancer surgeon only reluctantly signed a referral to a lymphedema therapist because he said only about 20% of his patients develop lymphedema. 🤨 And I changed primary care physicians because one of the people on her staff literally argued with me when I said “no BP cuff” on my affected arm!
I do work with my lymph therapist on risk reduction… for example, I wear (Solidea low compression) sleeves anytime I do anything that might stress my (also left) arm (and I keep spare sleeves in my purse and car for unexpected “opportunities“), I do MLD massage on myself, I carry antibiotic cream and bandages at all times to put on any little nick or cut. I had 20 lymph nodes removed. I am taking your struggle to heart. Good luck! I’ll keep thinking of you.
Liked by trixie1313, elizm
I did have lymphedema, although atypical where it was a clogged vein all the way to my wrist. My doctor referred me to a physical therapist that specialized in lymphedema and was great. It was quite a painful process with about 6-8 follow up visits where she had to pull and strip that vein but finally it is unclogged and the expectation is that this won't happen again. I also follow the physical therapist's exercise program. I was ready to purchase a compression sleeve, but was advised that those can also kick off lymphedema for someone that doesn't have it. I do have a gardening sleeve I wear for outdoors for protection as one little nick can start an infection. I think the main thing here is to be ever vigilent.
Liked by elizm
I met a lady who has severe Lymphodema on her left arm – she said she is always vigilant as any slight injury, causes her severe cellulitis. She is also a BC survivor – but they took out 29 of her 30 lymph nodes on that arm, like 15 years ago. So she still has problems. All of her nodes were negative – but maybe that's what they did back then. Seems like the surgeon was crazy to me. Good luck & she was wearing a compression sleeve.
I am on that medicine and now the Dr said to stop for three weeks because I have noticed my memory and concentration has gotten very bad then we will try a different med
I hope you see a difference. I was on Leterzole and had same problem. I even had a cognitive test, I though maybe I had start of dementia. Been off for 2 weeks and huge improvement. I start this weekend on exemestane, hoping do not have same problem.
Everyone reacts differently to AI, I have had no joint pain, but the fatigue and cognitive issues caused me problems. See discussion topic on Chemo Brain for more info: https://connect.mayoclinic.org/discussion/cancer-related-brain-fog/
Hi Trixie, I've posted several times about my bad experience with Anastrozole. I then went on Exemestane and had some negative side effects. Currently I'm taking a break from all the AIs and am scheduled to start Tamoxifen in January. I'm 75 and I'm very worried about blood clots with that drug, though. Does anyone have experience with Tamoxifen or have any credible information about the possible side effects?
Liked by trixie1313, kathyomaha55
I just started Exemestane like 6 weeks ago. What were the side effects you had – if you don't mind me asking. I was on Anastrozole previously like for 11 months. My hands hurt so much it was unbearable.
Kathy – I don't know if this will help. A cousin is on anastrozole and purchased some sort of "copper" gloves that she wears at bedtime and says that helps with the hand pain. I never tried that while on anastrozole because my heels, elbows, hands, spine, etc., were so greatly affected so I went off that as well as having horrendous headaches. I next tried letrozole – no headaches but the bone pain was bad. Have been on exemestane now for 3 months and can say it is not so bad, just some bone aches although not like with the other two types of pills and manageable – when it gets too bad then I take some ibuprofen. I was taking the pill at night to avoid any side effects but wound up with insomnia and now that I have switched to taking in the morning, not really having that problem. I do have some hot flashes, but they are not too bad – I just try to dress in layers and that works for me.
Liked by kathyomaha55, sparklegram
I could not take any stomp tase inhibitors. The pain and side effects were too intense and I was too close to going to the er. Mayo recommended galoshes, which is a monthly injection – one shot in each buttock. The only side effect is the day I receive the shot I am very fatigued and sleep in the afternoon. My body seems to be doing well on this. It is different for everyone, but worth asking about
I’m glad that you had another option. Wishing you the very best.
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