Tamoxifen, DVT & Pulmonary Embolism

LeesaAnn

I just reached my 5 year mark, cancer free, since 2011 diagnosis. I've been on tamoxifen since March 2012. Two days ago I was admitted to hospital with blood clots in my right leg, with MANY small embolisms in my lungs. I'm fortunate (or so I've been told) that while I have a lot of these in my lungs, its better than if the clots in leg had release large portions of clots to the lungs. That does more damage.

The shocking events of the past two days are just sinking in. 1/3 of people with PE die! I'm so lucky to be alive, and not have had a stroke or heart attack.

Has anyone else had this experience? How did you recover? What did your Doctor put you on since you can't take Tamoxifen.

LeesaAnn

just when I thought I had moved from the constant fear of recurrence. Now I have this hanging over me, something that could cause death in an entire different way. I feel very screwed.

Moderators

Leesa, we're so sorry you're experiencing this terrifying side effect! We're so thankful that now your situation is under control and your doctors can keep a close eye on you.

We hope others weigh in shortly with their thoughts and advice. But we wanted to reach out with a big hug and let you know we're here for you!

--The Mods

MelissaDallas

LeesaAnn, I had a multiple tiny pulmonary embolisms when I was very ill when I had ovarian cancer. My MO would not let me take tamoxifen or Evista for prophylactic therapy for LCIS but they WILL let me take an AI.You can only take AIs if you are menopausal or you are on ovarian suppression therapy.

LeesaAnn

Thank you everyone. I'm taking Eliquis (blood thinner) for 6 months. I see my oncologist in 2 days. Curious to find out her solution for moving forward. Is ovarian suppression therapy permanent? I'm not post menapausal.

Jennie93

If you have your ovaries removed, naturally that is permanent. But if you are just getting the shots to shut them down, it's not. You have to keep getting them until you reach menopause.