Exemastane vs letrozole vs no AI

Good morning,

I wonder if any of you might share your experience with exemestane. I was on letrozole for 5 months but overtime developed side effects that really affected my quality of life- anxiety, depression, bone pain, extreme fatigue. I was always crying, snapping at people, and dragging myself through the day, waiting for bedtime by 8 p.m. My oncologist told me to stop it for 2 weeks, and within 3 days I felt so much better. I have energy, a lighter mood, and feel like myself. Now she wants me to try Aromasin® but it sounds worse. The top side effects are hot flashes, sweats, anxiety, depression, and 10% weight gain! AS someone who already struggles with anxiety, depression, and weight, these sound very off putting.
I am tempted not to take any AIs. My oncotype score was 18, giving me a 10% chance of recurrence with distant disease if I do nothing. This decreases to a 5% chance if I take an AI for 5 years. I’ll be 72 in August. My margins were “great” after my mastectomy. My nodes were clear and CT and nuclear scans showed no spread to organs or bones. My tumors were 1.4 cm and 1.7 cm, grade 2. What’s concerning me is that both tumors were 90% Estrogen receptive. I am trying to make sense of this the best I can. Obviously I don’t want cancer again and definitely don’t want a secondary cancer, but I also want quality of life. Although I know everyone reacts to drugs differently, I would love to hear people’s experience with these or other AI’s, as well as what you might do in my place.
Thank you
Terri

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Hi , I empathise , I’ve been on Anastrazole for 8 weeks . My side effects seem to have stabilised but I have a change of brand for my next dose , really hoping that I don’t see a deterioration .
Have you tried a different brand ? They do differ in ingredients.

I asked my oncologist about exemestane but he said they don’t recommend it as a first line treatment . I’m at one of the leading cancer hospitals and he specialises in BC . I didn’t question why .

It does work differently to Anastrazole and letrozole , I think it’s more similar to Tamoxifen . Might be wrong !

My oncotype was 18 too. We are borderline low/intermediate risk , which worried me .
I was no nodes, clear margins and one tumour 2cm but mine is lobular and it didn’t show on a mammogram .

I’m mid 50s and just post radio but trying to get back my pre op fitness. I do find exercise , even walking helps my fatigue .

It’s a tough decision . Can you talk to your onco ?

Hi Terry.

I’ve been talking Letrozole for just over a year. Like you the side effects were horrendous, much as you describe. My oncologist and endocrine nurse advised me to stop for 4 weeks. I do feel much better in myself and pain levels are now manageable. I’m hoping to get a positive response to my request to go back onto the Letrozole but be allowed to take breaks when SE get too much.

I don’t much fancy trying the other AIs if I’m honest.
Nikki

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Considering you’re 72 it’s a crap shoot. I will say thought that 18 isn’t super low. It is definitely a real risk not taking endocrine therapy. But if you’re comfortable having less years as long as they have a really good quality then go for it. It’s up to you what you feel.

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I tolerated Letrozole for 18months before the side effects became unbearable. I had a 6 week break then started Anastrozole. I only tolerated that for about 6 weeks due to migraines and low mood/anxiety so I’m now on Exemestane which seems much better although the hot flushes at night have increased but I’ll take that over low mood and horrendous joint pain.
All my fingernails have just lifted from my nail beds so hoping it’s not a reaction to my tablets or I’ll have to stop these too.
Taking AIs only decreases my 10yr survival rate by 3% apparently so definitely not worth the side effects for me.

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I’m debating the same. Taking AI’s makes me go from 10% to 5% but the side effects are so life altering. By the way, my fingernails are in terrible shape from the letrozole. What do you think of the fact that you have to wash your hands after touching Exemestane? What are hot flushes like? I have thus far been spared those.
Thank you.
Terry

I’m 72 but my mom just died at 97 and my dad was 89. I potentially have a few years left. It’s funny how different cancer centers call 18 low risk and others do not. The whole thing is so confusing and very discouraging to me. Thanks for taking time to reply.
Terry

I was frightened by what I read on the fact sheet the onc sent me about Exemestane. The fact that you’re supposed to wash your hands after touching it seemed surreal. How do you risk putting that in your body? Fingers crossed your doctor will allow you to contiue on Letrozole but take breaks.
Thanks for your answer.
Terry

Hi, klf,
Thanks for your reply. I’m finding it interesting as I research what different cancer centers consider low risk vs moderate, and what drugs they recommend. My tumor also did not show on mammogram. It was picked up on an MRI.
I will see my onco in late June. Until then, she communicates through her nurse navigator on the portal. She’s responsive but it is not like a conversation.

Terry

Hi Terry

Did someone tell you to wash your hands after touching your tablets?
The hot flushes are mild so quite tolerable.

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Was yours lobular Terry ? Mine was and 2cm . That’s scary about Exemestane :cry:. The Anastrazole is startong to affect my joints now but I’m returning to yoga today and going for a short run . In my head , I’ve said give it a year , see how it goes . The onco mentioned Tamoxifen as an alternative but the side effects of that for post memo scare me more .

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I cpuldnt tolerate letrozole i then had anastrozle which was better i did then have a new diagnosis er8 again so i am now after surgery and radiotherapy on exemestane. I do have side effects e.g night sweats and some bone pain but it is doable. I also know someone who had bc clear margins no lymph nodes involved she stopped the als due to side effects and now has secondaries in liver lungs and bones. It is a difficult decision but maybe try the exemestane and see how you do. Some brands were awful but my gp had now prescribed aromasin only which is better x

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MIne was tubular. Not sure what it means.

The instructions to wash after contact between pills and skin was right on the download the doctor sent me about the drug. I’m in the US. Does your info say something different?

Thanks, everyone, for sharing your experiences and advice. I will talk again to my onco and be open to either going back on letrozole or trying something else. I don’t want to, but it seems the wisest choice.

Terry

So I took Letrozole for only 7 days and was in tears with the joint pain and general lethargy, have been on Exemestane now for just over 2 months and it’s much more tolerable, in my opinion. Yes there are flushes - particularly at night, but no weight gain and less aching joints. It’s not great if you have the estrogen receptive cancers, it seems all the medications are much of the same but I decided not to read the blurb with all the side effects when I started the Exemestane and see how it affected me without looking for the horrors listed. It wasn’t as bad as Letrozole for sure. I hope you get on better with it if you decide to give it a try.

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This is such a dilemma. I can only tell you my own experience which was that Letrozole was horrific in its side effects and I am no shrinking violet. I was not really alive, just a mass of pain and lethargy. Switched to Exemastane and slightly better but not much so I took the decision to abandon both.

To put this in context I am 74 and lead a full life after a mastectomy, chemo and radiotherapy three years ago. I am alive and am grateful for all the help of my oncologist etc., but simply couldnt tolerate the side effects of the drugs. Actually, side effects is a misnoma. They took over my life, making me an invalid and this is not something I am willing to tolerate. The NHS threw me under a bus when I was diagnosed in 2020 and all they cared about was Covid, so I am used to fighting to get what I need. It is something of a miracle that I am still alive and I took the decision that I wanted to live rather than extend my longevity. Okay, giving up the drugs undoubtedly enhances the risk and possibly if I was in my twenties with three young kids, I might make a different decision, but in the here and now I want to live whats rest of my life to the fullest extent. The drugs simply made me someone I am not and I didn’t want to live that life.

Good luck with your decison. It is not easy.

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18 is considered low risk but it’s not a super low score. There would still be significant risk associated with foregoing endocrine therapy.

Oh, Teddy,
I so relate to what you are saying. I’m 72, youngish considering my mom just died in November at 97, but now young. I, too, live a very active life. It teach 2 classes, mentor student teachers, and am a church musician on the weekends. You said it well- the drugs made me someone I was not. It was a herculean struggle to get through my classes, minute to minute not knowing if I’d make it to the end of class. Then I’d go home and just want to do nothing. I felt so weepy and bi@@@y. I also had increased anxiety and depression, as well as bone aches.

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So many people have this dilemma @terry and there are many threads on this forum debating it. Alas no-one can possibly know whether they will have a recurrence, particularly a metastatic recurrence, which is the fear that haunts us all. Yet the side effects of AIs for some women are crippling and debilitating and it’s difficult to see the point of securing a longer life if this is what it’s going to be like. Those who manage well on them will never understand the terrible predicament people such as yourself are faced with. It sounds as if you are trying every option of treatment - different types of AI, different brands within those types so you’re not giving up easily. Just be sure, if you do give them up, as many do, that, should the worst happen, you will be able to accept that it was a known potential consequence and you can live with the decision you took. My heart goes out to you, it is not your fault that these drugs have such a deleterious impact on you and it’s unfair that you’ve been put in this position. I hope your family and friends support whatever you do and that you have many busy, enjoyable, cancer-free years ahead of you.

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