Tamoxifen and blood clotting? Pre-menopausal and family history of pulmonary embolism.

Hi everyone! I will have to deal with this next Tuesday with my Oncologist. Would love to have feedback of experience with this? Hope someone out there can help? Lots of hugs Sarah xxxxxxxxx

Hi Sarah

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I don’t know about pulmonary embolism but my mother had a big heart attack in her 60’s and her side of the family has a history of poor circulation. I started Tamoxifen in April 2010 and after 10 weeks on Tamoxifen with leg and feet cramps worsening by the day, I woke up one morning and couldn’t see out of one half of one eye. Fortunately it cleared after about 5 minutes. The hospital classed the event as a ‘mini stroke’ and as I was postmenopause (65) my surgeon put me on an aromatase inhibitor instead of tamoxifen.
At that stage I was fairly fit and I cycled and I was only mildy overweight.
On Arimidex AI I suffered almost all of the side effects and after almost 2 years I gave them up as well, deciding to concentrate on keeping my heart attack risk down. So currently I’m not taking anything. I’m fitter now and I’ve changed my diet, I walk a bit and my BMI is normal, and most recent mammo 4 weeks ago showed NED

Hi Sarah, I have no direct experience of this, but have a friend who has a similar risk.

It is possible to take Aromatase Inhibitors (AIs) if you are premenopasual, but you would need to have zoladex injections to ‘put your ovaries to sleep’. Both AIs and Zoladex have side effects, and you’d need to explore these with the oncologist before beginning to take them. My friend had had chemo and left effectively post menopausal so did not have zoladex. Unfortunately she suffered really bad joint pain, so has now been put onto Tamoxifen with daily aspirin to reduce her risk of blood clots - so far she’s doing really well.

It is worth discussing pros and cons with your oncologist, as there are some options open to you. Hope you find a way forward that is safe and side effects are minimal.

Hi, I got a clot in my neck from the picc line during chemo so was unable to take Tamoxifen. I am pre menopausal so was given a combination of zoladex & Letrazole which I have been fine on, am just waiting for a date to have ovaries removed & then the zoladex part will be dropped. Sarah