Hi all, I’ve been on exemestane since January and despite some hot flushes and achey joints in the mornings I’ve been managing okay. I see on this forum most people seem to be on Letrozole - I’m confused why I’ve been put on exemestane. I asked my GP and he doesn’t know why the oncologist chose this drug. Is anyone else on exemestane and did your oncologist explain why you were put on this drug? I have read it is equally as effective as Letrozole and Anastrozole… but there haven’t actually been studies comparing them all that I can find? Thanks
Hi im in the same situation, started on tamoxifen for 6 weeks then zoladex injection then switched to exemetasone,doesnt seem that many are given this drug. Im unsure if its to do with age but will be asking my specialist at my next appointment, ( im 43 ) .
I would love to know this too
I was just told Letrozole 2m into Zoladex & after radio
Had my appt today & didn’t think to ask
Hi @Jess_1 exemestane is a steroidal aromatase inhibitor whereas Letrozole and Anastrazole are non-steroidal and they work slightly differently. There has been one study I read (there may have been more) comparing Exemestane and Letrozole with Letrozole coming out as the most effective AI but there’s hardly anything in it, they all work very well. Exemestane interacts with fewer other drugs than Letrozole so might it be you were given it because of another tablet you are taking? It could just be down to what your oncologist favours and prescribes regularly.
I was on letrozole for about 18 months but hated the joint aches and pains and especially the vaginal atrophy. My consultant changed me to exemestane and all the side effects have improved -compared to letrozole, but they are still there!. I’m 60 years old. I have also read that they all work as well as each other but I think its a matter of finding one that suits you. The side effects can be very challenging, especially when we’ve to take them for between 5 and 10 years.
@Galaq can I ask how fast the side effects for Letrozole started?
I took my first one today (gulp) and my onoc has asked I give it 12 weeks to settle
Not sure if it kicks in right away or not
Really wish I didn’t have to take a hormone blocker but the benefit is too high for me to ignore
X
I had to change after 2.5 years from Letrozole to Exemestane due to the side effects.
I’m 66. The side effects gradually built up I found…the key is if it becomes unbearable you talk to your BCN, oncologist.
Hiya idcand49, its hard to say how long it took as when I started them I had just had a full lymph node clearance then about 6 weeks later started radiotherapy followed by starting Abemaciclib. So not feeling at my best anyway.
It was about a year into them when I realised I felt like a really old woman, very stiff gettingbout of chairs and cars. Sometimes I pretended to check my phone to give me time to try and loosen up so that I wasnt hobbling so much. I had osteoarthritis before my breast cancer diagnoses so was warned the stiffness etc was likely to be worse. The biggest improvement since changing to exemestane has been with the VA and intimacy problems. They are so much better than on letrozole. Although I feel better its still worse than not being on hormone blockers and I am in a constant battle with myself. Do I come off and feel better in myself but possibly risk a recurrence. Some say theres a huge benefit in terms of preventing recurrance, others say its only 2 or 3 %. I am seeing my oncologist in January so will have a good discussion with her then. I’m not sure if all that is any help to you icand49,? There are also women who cope with these drugs with very few problems.
Hi Galaq
I was interested to read your reply
I’m 61 and was given letrozole august last year
The joint pain and vaginal atrophy are truly awlful
After a years wait I got an appointment with the menopause clinic and the dr there gave me three months of vagifem but two a week so not really making that much difference. However she said if my consultant refuses the long term prescription of this medication then I can’t continue.
I have to wait until my next appointment in January to find out.
I’m seriously considering trying to see if I can get a telephone appointment with the oncologist and seeing what the options are. No one told me the percentage comparisons re survival with or without this drug so I can’t make an informed decision.
As someone mentioned before everyone is different and so you can’t make a blanket statement for or against these tablets
I have started an exercise program with a PT who has started a perimenopause group. She said the fact that I’m post menopausal isn’t a problem and the daily walking and water intake together with beginning exercises will I hope help some way towards easing the symptoms
I wish you well
Please keep us updated
And to everyone reading this post, I wish you all well on your journeys
Lynn x
I changed from Letrozole to Exemestane and the vaginal atrophy is no longer a problem. Also my hands (my fingers felt luke they were popping out of the joints) are much better.
Exactly the same for me. No way I could tolerate Letrazole but am doing reasonably ok on Examestane and will continue on this for my five years if it stays thus way.
I hear you re not feeling great anyways
2 surgeries, chemo. Radio , Zolodex injections & now letrozole I wonder if I will ever feel “normal” again
I’m giving these devil tablets a shot as I was hormone + pre meno at the time with a mode involved
I am petrified of it coming back esp when at age 49 I only had a 2-3% chance of getting this thing in the first place
But I also won’t suffer in silence and will change tabs if needed
Thank you for this
Yes I’m not planning on suffering in silence
This feels harder than chemo as it seems v challenging for most women x
Hi, nothing to do with age. I was 43 when diagnosed and prescribed Letrozole. My oncologist wanted me to be on it as I was on Abemaciclib for two years. The combo Abemaciclib/Letrozole is the one the research has been done through the monarchE trial. Check it…it’s up to your oncology team to make this decision.
I’ve stoped the Abemaciclib this June but still have 5 years of Letrozole.
I’ve been on both, and my joint pain and general aches are as bad on either. My oncologist said it was like having daily chemo, albeit at a lower dose, hence why the side effects seem to build up
Good luck
My hospital usually pairs ovarian suppression with letrozole but the oncologist said I might do better with exemestane as it a little less likely to cause musculoskeletal pain, and I had extremely debilitating joint and muscle pain after taxane chemo. I do still get a bit stiff and achy and the hot flushes are relentless at times, but I have managed to survive a year on it now, and am hoping I can go the distance. I have been told I can switch to tamoxifen at the 5 year mark.
I had Breast Cancer, Stage 1 Invasive with ER and PR positive about 18 months ago. I had a Lumpectomy, Radiation, and was put on Letrozole. I developed horrible joint and muscle pain. My Oncologist told me to stop it for 3 weeks. Now, she wants me to start Exemestane. I know they are similar but Exemestane lists Urinary burning and frequency as side effects. I have Interstitial Cystitis which greatly affects me. I don’t want to take anything that will make it worse.
Are any of you taking this? If so, do you have urinary symptoms? I also have Asthma and tightness in your chest is another side effect. I am seriously thinking of not taking these drugs. I am 70 and my chance of reoccurrence is low. Thanks so much!
I was on Exemestane for five years following my breast cancer diagnosis which was 22 years ago. After the five years I did great for 17 years until until I received a diagnosis of MLBC in June. The only side effect I had from the exemestane was that I developed osteoporosis in my left femur. I was 57 when I received my original diagnosis.
I requested going on it again since it was so effective for me before and I am now taking it along with palbociclib. In September my scans revealed no evidence of disease so I am very pleased and I think the Exemestane is largely responsible for my improvement. I believe the SONIA study indicated that patients could start with Exemestane alone as the first line of treatment. I got a second opinion at Stanford and that doctor questioned why I am taking both medications now instead of Exemestane alone. I hope my experience is helpful to you.
Hi there, I have been prescribed Exemestane for just over four weeks & as you said been experiencing some hot flushes which is a pain as I was post menopausal before my diagnosis so gone a bit backwards.
I requested this one as it doesnt contain lactose so better for me from a dietary point of you. It seems to be ok for the moment.
It’s good to know that Exemestane has less side effects for many people commenting here and also for some I meet in person.
That may be my option then to switch from Letrozle if it becomes unbearable.
Only 17 days in. So far 3 days of nausea with slight headache ( passed) and four days of dull persistent muscle pain and a bit of joint stiffness. I will see how it goes but definitely could not stand that muscle pain for more than few days a month…