Tamoxifen/Stroke/Blood Clots

mgm42
mgm42 Member Posts: 491 Member
edited March 2014 in Breast Cancer #1
(My picture doesn't fit my state of mind today.) Has anyone who is or has taken Tamoxifen had problems with blood clots and /or stroke? My body cannot tolerate AI's, so my oncologist wants to try me on tamoxifen. But first, I will see a hematologist to assess whether I would be at risk for blood clots, heart attack or stroke if I took it. Although my overall cholesterol has always been in the normal range, my tri-glycerides are always elevated and my LDL and HDL are never good. I had surgery on my right carotid artery to remove a blockage two weeks prior to my lumpectomy in December of 2007. I feel like I'm damned if I take the AI's, I'm damned if I don't, I'm damned if I take the tamoxifen and I'm damned if I don't. My ER level was 100% and my PR level was 30%. My oncotype score was high risk (36) which put me at 24% chance for recurrence. I could scream - and cry, which I'm doing right now. I just needed to vent, but if anyone has had experience likes this, I'd really appreciate hearing form you. Thanks. Marilynn

Comments

  • tasha_111
    tasha_111 Member Posts: 2,072
    #2
    Mgm
    Please don't be upset and crying.............I am on tamoxifen and it's a real bummer, but don;'t let it get you down, please, It's not worth it
    I am on tamoxifen (NOT good news) and Zoloft(dEFINITELY not good news!) wE ALL DO THE BEST WE CAN............i HOPE YOU CAN RISE ABOVE THIS............hell i KNOW YOU CAN.............

    Lovely lady that you are, you don't deserve this, so don't OWN it!

    Marilynn........... A HUGE HUG TO YOU! Jxxxxxxxxxxxxxxxx
  • jennytwist
    jennytwist Member Posts: 896
    #3
    My oncotype score was 32
    Hi Marilyn,
    I've been on tamoxifen for about a 3 weeks now and seem to be doing ok. When I read about all the possible side effects I freaked out! I made myself almost sick with worry about what was worse - a recurrance or having a stroke. (Since I've been on this site, I think you are the only one I've seen with an oncotype score in the 30's, like me) Talk with your Dr about all your concerns - there must be something for women who can't tolerate tamoxifen - I was even thinking of asking for the test to see if I'm metabolizing it or not. Just don't give up! I'm sure after you discuss this with a hematologist and your oncoligist, together, they will come up with a solution! It's OK to vent! I know they'll find something that will fit for you - there has to be something for women who are high risk for blood clots, stroke, etc so don't worry - it'll be OK! HUGS!
    -Jenny
  • jennN
    jennN Member Posts: 40
    #4
    tamoxifen
    I am 41 and cannot take Tamoxifen due to a blood clotting disorder. My onc. wants to put me into menopause so I can take Arimidex (or a generic of it when I'm done with chemno). This is supposed to be less likely to cause clots...and be equally as good for post menopausal women. So, you have an option if you are concerened.
  • Kylez
    Kylez Member Posts: 3,761 Member
    #5
    jennN said:

    tamoxifen
    I am 41 and cannot take Tamoxifen due to a blood clotting disorder. My onc. wants to put me into menopause so I can take Arimidex (or a generic of it when I'm done with chemno). This is supposed to be less likely to cause clots...and be equally as good for post menopausal women. So, you have an option if you are concerened.

    Tamox
    I was suppose to be on tamoxifen, but, I haven't taken it yet. I am still afraid of the side effects and I have seen so many post on here about a recurrence, and, these were after taking tamoxifen for years. I hope you can find a solution.

    Kylez ♥
  • jk1952
    jk1952 Member Posts: 613
    #6
    Kylez said:

    Tamox
    I was suppose to be on tamoxifen, but, I haven't taken it yet. I am still afraid of the side effects and I have seen so many post on here about a recurrence, and, these were after taking tamoxifen for years. I hope you can find a solution.

    Kylez ♥

    Yes, I had blood clots

    I was on Tamoxifen for 6 months in 2000 and then developed blood clots. At the time, I also had an infected insect bite, so it is hard to tell whether Tamoxifen was really the cause of the blood clots. There is a test that can tell whether you have the Factor V Leiden 'mutant' gene, which greatly increases your risk of blood clots: I do have this.

    At one point, my PCP said that they had determined that only people with the Factor V Leiden would develop blood clots. I don't if this is still the understanding, but if you are concerned about them, you should ask your oncologist or hematologist for this genetic test.

    Even though I had to stop taking it, I'm glad that I did try it, to do whatever I could to fight the beast.

    Joyce

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