Taking Letrozole for 3 years now… platelets started dropping a few months after start and have been monitored (3 monthly) for the last 2.5 years, still dropping but not until this week low enough to warrant an emergency trip to haematologist today for bloods and further discussion. Today’s level is 26! And skin púrpura showing for first time. Letrozole has been mentioned as possible culprit (yes, another side effect!). Consultant is pointing to Letrozole as there is some research showing the connection and with the timing…. Has anyone else taking Letrozole experienced (ITP) low platelets? Any info welcome. Many thanks.
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I have taken Letrozole for 15 months and now on Exemestane. I hadn’t heard of this particular side effect. Maybe worth a call to the BCN nurses 0808 800 6000 m-f 9-4 sat 9-1.
Hi, I was started on tamoxifen the side were too much was switched to extermane and on day 14. Finding the constant sweats/shivery too much to handle also the extreme fatigue.
Also joints sore. Interest to know if this is happening to you. Shattered with getting no sleep and sweats all night.
Yes Exemestane is worse for hot surges and sweats. I was taking Oxybutynin on Letrozole to reduce them but it didn’t work with Exemestane. Sleep is very poor. I had taken Zopiclone but GP doesn’t want to keep prescribing as it can be addictive. There is a new sleep drug called Quviviq but you need to do some sleep hygiene before it can be prescribed (Sleepio can help with that) https://www.quviviq.com/
You can access Sleepio app for free with a cancer diagnosis and ask for a menopause clinic appointment.
Menopause and Cancer charity has lots of resources. You can also access a free menopause appointment via their website.
I still get joint pain aswell and find walking and yoga ease it a bit. But I still need painkillers.
I hope this has helped a bit.
Take care
Hi naughty-boob, thank you for your reply. My oncologist wanted me to try Exemestane and said it was well tolerated but I’m really struggling with side effects and seriously considering stopping it but afraid of risks. Seeing oncologist on 15 November and il tell her my concerns.
My GP also gave me sleeping pills but not enough for me to get addicted to them. Still feel shattered next day and everything is sore.
Wishing you well.
Xx
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What was your reason for switching?
I’m considering it myself due to some achilles inflammation.
Did you directly switch, or stopped Letrozole for a while before starting Exemestane?
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Hi @tulip56
A multitude of reasons. See my thread
I had n 8 week break in the end, was 4 weeks then waited for prescription to come in the post, first one got lost so another few weeks wait, hence 8 weeks. I found the hot flushes, fatigue, poor sleep and aches and pains reduced after a few weeks. It took a while for the Exemestane symptoms to start. I watched a BCN Live with an oncologist ( see their YouTube channel, I think it was a female doctor) and they said as the drugs builds up in your system so side effects can become worse and breaks can help you continue the treatment long term. So always worth asking for a break first and see how it affects you.
Thank you for this information and the link to your comprehensive thread.
I hope your side effects with Exemestane are manageable.
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There are some good treatments for insomnia that are not habit forming.
Oh my goodness. Just found this site and saw your post. I have been taking Letrozole for 8 months and some crazy brusing just started. My platelets are also at 26. Was started on Prednisone and have another lab draw tomorrow. Just wondering how you are doing. Need some encouraging words..or…advise. Cathy
Hi, thanks for your response. I am still under investigation with Consultant (haematology) he has not put me on steroids as yet, and waiting result from a bone marrow sample. I came off Letrozole for 3 months, made no discernible difference to my low platelet score, so Letrozole ruled out as a cause! Autoimmune seems likely, and the bone marrow results will help to confirm this. Due to have bloods taken soon to coincide with next consultant review. Some bruising still, few nose bleeds but nothing more than that at present. All the best to you.