Nervous about switch from Letrozole to Exemestane
Comments
-
yes I understand going to exemestane needs a longer washout as it’s a different type of AI than anastrozole and Letrozole.
I also understand different countries have different protocols. I’m in Canada. 🇨🇦Just waiting for the pharmacy to call. Which I expect sometime this next week.
0 -
@canarycat Interestingly, when I asked my onc team about taking a break from Anastrozole before starting Exemestane, I was told to just make the switch immediately. (I live in the states).
Hope that your transition goes smoothly.
Hugs, Pam 💗1 -
@livinglifenow interesting. I’m thinking it’s exemestane to other AI that needs the longer wash. I’m hoping I tolerate anastrozole. But if not I’ll be joining you with exemestane. Have a great day.
2 -
still waiting to hear from BC Cancer pharmacy. I’ll call them on Monday if I don’t hear anything tomorrow. I was planning on starting them after my trip to the mainland which is this weekend. Short trip. Going to my 50th High School reunion. How time flies!!!!
2 -
I started exemestane on 7/31. My bloodwork on 8/12 was good, but subsequent bloodwork (3 separate tests) showed elevated ALT and AST. I’m following up with my PCP, but read that exemestane can cause elevated liver enzymes. Anyone else have this experience?
0 -
No Zometa today.
Hi ladies, one of my dearest friends came to take me to my Zometa infusion and stay with me through the first couple of days pos-infusion. I usually get flu-like symptoms and massive brain fog. Of course the sciatica makes driving longer than 15 minutes true agony.
I’ve restarted my letrozole and the UTI symptoms are back. Well they may not be symptoms because my white blood cell count was high enough that the PA decided not to go ahead with the Zometa infusion today. Did you know that being on letrazole can result in frequent UTIs and urinary incontinence? The lack of estrogen weakens the urethra and the pelvic muscles. So she gave me an estradiol cream to treat the urethra. No switching off letrozole yet. It’s still the “best choice” for my diagnosis.
So I still have 2 Zometa infusions to go and still on letrozole.1 -
hi there
I just switched as well. I already had neuropathy in my feet, it had been present in my hands but had subsided, and yes, it did get worse while I was on letrozole. I also had joint pains, fatigue, hair loss and mood swings. This is now the third anti-estrogen I am trying. I had tears at my appointment and a very kind nurse explained to me that taking AI is a preventative measure, to try this one for at least a month and if it's not working for me, I can decide to just not take any going forward.
WWhile on letrozole, I did havee elevated liver enzymes. Neither my family doctor nor the oncologist seem worried by them. I eat plant based and try to exercise regularly and other than the above symptoms, I feel healthy.
MMy big concern is bone loss.
2 -
I'd love to hear how it goes for you. I never made the switch - got too scared about new side effects. (went with "the devil you know…") I also determined that the letrazole wasn't causing my neuropathy because during a 2 week drug holiday it did not subside. (However, the drug holiday did show me all the other side effects like joint pain, trouble sleeping, moods, and fatigue…I felt like my "old self" during that drug holiday). I went back on as directed by my oncologist. I wish he would suggest that I stop. I can't believe I'm supposed to do this for 8 more years. I'm so scared to stop and have a recurrence and then feel like I could have avoided it, you know?
1 -
@blair01 I also am afraid to switch, but I have only been on letrozole for about 5 months. I have really bad joint pain in my legs and feet that make walking somewhat challenging at times. This is pretty much my only side effect though so I would hate to switch and make things worse for myself. After reading these posts I am thinking about switching to exemestane if my pain becomes intolerable.
@janpiers I have elevated liver enzymes on letrozole, but my oncologist is a little concerned about it because my liver is also a bit enlarged so I have an appointment next week to look at that issue. My big concern is also bone loss, I am taking a vitamin D supplement to hopefully assist with this. Which AI did you switch to and how is it going?
0 -
I've been on Exemestane just under a week. The bone and joint pains I experienced on Letrozole is gone. My moods are improving although I still have crying jags. I'm so mad that I still can't do the things I used to be able to do. Everyone says give it time. ...
What I'm already experiencing on Exemestane is muscle pain. It started 2 days ago in my calfs and the back of my legs. Today a bit in my upper arms.
We (my husband and I) are registered in a heart health program (this is for his health, I'm added in as an accompanying person) and I asked our coach what to do. He recommended stretches but to make sure I warm up first.
I'm hoping these will get better with time, at the cancer centre they said things might be intense at first then level off.
Muscle pain is a lot less intense than bone pain.
And the results of my December bone scan don't show any further bone loss from the scan taken before any cancer treatments two years ago. 😀
1 -
hi everyone. I switched from Letrozole to anastrozole. No more joint pain or hair thinning!!!! But sleep is starting to be disturbed. I’ll just need to hit the sack earlier and see if that does the trick. I’ve been awake since 5 am. Not good for me. I need 7 hours of sleep not 4!
1 -
@canarycat So glad the switch to Anastrozole is treating you well.
I’m still debating how much the exemestane is contributing to my mildly aching muscles, and extremely tight piriformis muscle that is causing severe sciatica in one of my legs. Will see the oncology nurse tomorrow. I really don’t want to switch to something else, but the sciatica has been debilitating. I spend most of the time lying down with a heating pad, walking a little bit, and that’s about it. Sitting hurts way too much.Hoping for some answers tomorrow.
Hugs, Pam 💗1 -
@livinglifenow hello. I hope you had a good visit on Feb 17. I had my last visit with the oncologist yesterday. Other than a ling issue from radiation I am doing well on anastrozole. Each of us respond so differently. Hope all is well with you.
0 -
@canarycat So glad the Anastrozole is working well for you.
Quick update on my February 17 appointment: I saw the oncology nurse and we discussed my sciatica pain and other muscle/joint pain. She switched me from cyclobenzaprine, a muscle relaxant, to a different muscle relaxant called Tizanidine. I’ve been taking that for a week now along with tramadol midday for the pain and the pain is only minimally reduced. I called today to explain this and was told it would be OK to take a two week break from exemestane to see if that relieves any of the issues. Something’s got to give. If, indeed, Exemestane is the cause, I may go on tamoxifen. At least that will be better for my bones and such. Will keep you posted.Praying your lung issue from radiation improves soon. Thinking of you. 🙂
Hugs, Pam 💗
0 -
@cardplayer: I started on Letrozole in Nov of 2024 and I developed trigger finger and now Dupuytren—both on my right hand and both related to the ring finger. I saw a hand specialist who dismissed letrozole as the cause. I know the Dupuytren is genetic (my father had it) but the timing is very suspicious. I cannot find anything online about the connection to this disease if there is one, but it seems clearly related. I am sure my oncologist will suggest tamoxifen, but that has its issues as well. Please let me know how your switch goes.
0 -
@tigglewinkle I developed trigger finger on letrozole and so did almost half of the ladies in the online support group at roughly the same stage in treatment. There absolutely is a correlation between trigger finger and letrozole. My oncologist and hand surgeon both confirmed this. I had surgery on my right thumb a year ago and I’m contemplating surgery on my left ring finger and possibly my left thumb if it continues to progress. In the meantime, I use the oval braces to minimize sticking and I do the OT exercises to try to postpone the surgery. I have 2 more years on letrozole…at least I hope the 10 year course won’t be recommended. If it is, I’ll have to evaluate the quality of life. AIs are just the pits!
1 -
I have now been off exemestane for five weeks. At two weeks after stopping it, I was finally able to sit to eat breakfast instead of lying in bed and eating my oatmeal. That was the first time I could do that in over six weeks. I just keep getting better and better. I am now back to feeling perfectly normal again. I did switch to tamoxifen three weeks ago. Not many issues with it at this point. I was on it when I was first diagnosed 16 years ago for five years. Felt way better than on the AIs. We’ll see how this goes. Hope all of you are doing well dealing with these AI issues.
Hugs, Pam 💗
2 -
Hi all, After reading these posts, I am now realizing that I definitely suffer in silence maybe a bit much. I have trigger finger often enough now that I expect it; silly me thought I just have to live with it. I also have a persistent pain in my left side back for 3-4 months now -especially in the morning- that seems to be a muscle pain (docs don’t see any bone Mets there). I didnt think of the Letrozole and my team never said it might be from the AI.
I have terrible heat flashes at night and insomnia and did lose at least a third of my hair. Just figured I have to grin and bear it. Been on letrozole just a little over a year now along with Kisqali.
Due to some minor progression in my pleural effusion on both sides, changing my treatment plan is being considered but per March scans my bone Mets are still either stable or regressing and my lymph nodes are stable too so something is going well. I’m afraid to change since they mentioned Afinitor. What with my breathing and cough issues from the pleural effusions, I don’t need to risk lung issues too. I intend to refuse that drug till I have no other choice.
Maybe I’ll investigate changing the AI but stay on Kisqali for a while longer. I’m just a year into my de novo MBC diagnosis and on my first treatment line; there has got to be lots of options. No actionable mutations found yet…..
Thanks much for discussing your situations; it so helps to know I am not alone! Later this month I’m heading to Paris for a week and then a week in LA. Not making any changes till back from those trips, that’s for sure!!! @livinglifenow Hi Pam!! So thrilled you are feeling so good! I pray it continues for a long time!!
Wishing all a happy holiday this week if you celebrate either one! juliana xox2 -
@eddiej Wow! It sounds like you’re having some issues from the various meds you are on. It did take me months of eliminating various factors to figure out that the exemestane was the real culprit. I saw my oncology nurse yesterday whom I had seen six weeks ago when it was super bad. She kept looking at me and saying “I’m so happy that you’re feeling so much better. You were in so much pain the last time I saw you. So glad you advocated for yourself and found a solution.”
Hope you find a solution to your issues soon. Have fun in Paris and LA!Hugs, Pam 💗
2
