Tamoxifen low-dose (10mg) & Pulmonary Embolism (PE) & Xarelto

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maryny16
maryny16 Member Posts: 19
edited June 2020 in Hormonal Therapy - Before, During, and After

Hi

I was on Arimidex/lLupron and the side effects were so severe (constant dizziness, vertigo, bone pain, inability to sleep, night sweats and more) so my doctor switched me to Tamoxifen 20mg. I developed very thick uterine lining issues (and pain) and have had to have 2 D & C to remove the thick lining and polyps but no Endometrial cancer.

However, the worst was I developed a severe pulmonary embolism which was very scary. As a result of the PE the Tamoxifen so I am now on a low-dose of Tamoxifen (10mg) and take Xarelto (blood-thinner) ever day. (Believe it or not the side effects were harder on the Arimidex)

Is anyone else having these blood clotting issues with Tamoxifen ? If so how did you handle treatment.

Does anyone know the effectiveness of the low does 10mg of Tamoxifen over the long tern in preventing reoccurrence I had 3 tumors with my original cancer but all under 1cm and negative nodes.

The AI's were truly intolerable and I am about 2-3 years or more away from menopause. Would love any insight or similar stories or research showing 10mg is effective for Stage 1 or greater Breast cancer.

Thank you!

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  • elleredux
    elleredux Member Posts: 45
    edited June 2020

    Hi Mary, it looks like it's been a while since you posted this, but I thought I would respond in hopes that you may see it. Or that it may help someone else. I too had DVT and PE (yes, scary!) after tamoxifen (along with having a d&c for uterine lining issues). I was pre-menopausal so I was told that my option for hormonal therapy was ovarian suppression and an aromatase inhibitor. I did this combo for about a year, and decided to go ahead and have my ovaries removed during the same surgery as one of my reconstruction surgeries. I was done having kids and really didn't like going for the zoladex shots. I have been on exemestane for almost 5 years. My oncologist said depending on the health of my bones, I could choose to go back on regular dose of tamoxifen plus Xarelto. Taking a lower dose was never presented as an option, and not sure if the lower dose really reduces the risk of clots any more than the normal dose. Also, I haven't heard of any info on how effective the 10 mg dose is, I don't thing it's that common to give that dose at this time. Anyway, hope all is well, and good luck!

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  • BCat40
    BCat40 Member Posts: 241
    edited June 2020

    I haven't started hormone therapy yet but I have seen several other posts in this forum with women taking 10 mg of Tamoxifen. Check the "Bottle O' Tamoxifen" thread. I was told by several MOs that as a premenopausal woman I would not have to worry about uterine lining thickening on Tamoxifen because I would shed the lining every month when I had my period. Is that not true?

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