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Tamoxifen and low platelets

nancy2581
nancy2581 Member Posts: 408
edited September 2019 in Hormonal Therapy - Before, During, and After

Hi all - I posted about this once before, but I'm still concerned. Seems like since I've been on tamoxifen my platelets slowly are going down. My onc doesn't want to jump to the conclusion it's the tamoxifen. Um ok then what is it? Last Sunday July 10th I woke up and the entire top of my foot and sides was all black and blue. Weird! I did not injure myself. I ended up going to urgent care because my husband said my foot looked worse that afternoon. So urgent care did a CBC and my platelets were at 135. I know this isn't dangerous, but it's the lowest it's been. They keep going down. They have bounced back a little a few times, but then go down even lower the next time I have them checked it seems. Tomorrow I am having another CBC to check my platelets. I have stopped tamoxifen for a week (my onc said ok) to see where my platelets are. I see her on Tuesday to discuss, but she doesn't think it's the tamoxifen. Did anyone go off of tamoxifen because of low platelet?. Maybe it's not the tamoxifen? The rest of my bloodwork is fine. My platelets held up better during chemo.

Thanks

Nancy

Comments

  • nancy2581
    nancy2581 Member Posts: 408

    bump

  • nancy2581
    nancy2581 Member Posts: 408

    bump

  • CassieCat
    CassieCat Member Posts: 863

    This is pretty much exactly what happened to me. I found somewhere that it is a SE of Tamoxifen, though not a common one. My onc tested for everything under the sun, and nothing came back positive. My platelets are hovering around 120,000-130,000.

  • nancy2581
    nancy2581 Member Posts: 408

    Thanks CassieCat. I saw my onc yesterday. It's not a very common side effect you're right. My onc said less than 1%. She did another CBC on my and this time in a citrate tube to see if I am a clumper lol. Doesn't appear that I am. My platelets came back at 150,000 so they went up a little, but this is the pattern. The fall, then go up a little then fall further than before they went up. My onc also did a peripheral smear - don't know the results on that one. She says she's not worried (I am) and will do another CBC in October.

    Did your onc take you off tamoxifen? Oh probably not - you are young.

    Nancy

  • CassieCat
    CassieCat Member Posts: 863

    My onc always fears the worst and has no bedside manner. So he had me worried about everything, when in fact I am certain it's the Tamoxifen combined with chemo just being hard on our marrow, period. And no, I'm still on the Tamoxifen. It's been about 15 months of it now. Glad to hear your counts were at 150K today. Gotta' celebrate the good news when you get it. :)

  • KateB79
    KateB79 Member Posts: 555

    Had the same thing going here, too, along with mild neutropenia. Just had another CBC, and my platelets are up to 155k; my ANC is still a little low, but my absolute leukocytes are on the upswing, too. Still waiting on smear results (that sounds so ominous), but I've made a conscious decision not to worry about this anymore.

    Tamoxifen and Herceptin (only one infusion to go--we had to hold my last one--how anticlimactic is THAT?) can both do this, and carboplatin can cause wacky counts for up to two years, so all things considered my guess is that we're gonna be okay.

    :)

  • nancy2581
    nancy2581 Member Posts: 408

    thanks ladies. My onc called me and says I have psuedothrompicena. She says my peripheral smear showed my platelets normal (don't know the count) and that I'm a clumper. I should be happy right? It still bothers me that my platelets have gone down consistently since starting tamoxifen. I guess I won't worry about it. Another CBC in a citrate tube in October so we shall see. Glad my onc is monitoring it closely though

  • specialk
    specialk Member Posts: 9,261

    nancy - pseudo-thrombocytopenia means that your platelets are normal and the issue is that they are clumping in your blood sample and giving a "false" low platelet count. This is a testing anomaly, not a physical one - that is why your MO referred to you as a "clumper" and let you know that your count is normal.

  • nancy2581
    nancy2581 Member Posts: 408

    Thanks SpecialK. I'm not going to worry about it anymore. All of my bloodwork looks great and I'm happy that I don't have to go through all kinds of testing to figure it out. My onc guessed this before she ran the tests, but I was skeptical lol

    Nancy

  • Ribbonrep
    Ribbonrep Member Posts: 4

    my Onc just had me overnight in hospital due to platelets dropping to 6000. Had a transfusion and they climbed to 25000. They immediately took me off of tamoxifen and put me on high dose steroid for 4 days. I had only been on for six weeks! They have only seen it twice, but it does happen. Today I am up to 46000 and will have daily blood draws until it gets into normal range.

  • moderators
    moderators Posts: 8,637

    Hi Ribbonrep, and welcome to Breastcancer.org!

    We're so sorry to hear you're going through such a scary time. We're sure there are many others here who have experienced or are experiencing this issue who will be by to offer their advice and share their story.

    We're looking forward to hearing more from you soon and we're sending lots of healing thoughts to get you back in good health!

    --The Mods

  • nancy2581
    nancy2581 Member Posts: 408

    Wow Ribbonrep I'm so sorry that happened. Glad they took you off and your platelets are climbing now. So scary. Mine have never been that low and my rad oncologist feels they are going up some now. I'm having a blood draw on Monday so I will see where they are at. Feel better soon! Hugs

    Nancy

  • denise-g
    denise-g Member Posts: 353

    I had very low platelets during chemo and MO said no chemo the next week if platelets don't improve.

    So I started researching and researching.  I found Papaya Leaf Extract increases platelets. 

    I ordered some organic on Amazon, took 2 tablespoons a day, and the next blood count my

    platelets were normal.  My MO was shocked.  You know, I never told him what I did, but hey,

    it worked!

  • ChgoDeb
    ChgoDeb Member Posts: 10

    so glad it worked! Still taking it? Do you recall what brand you ordered? I just looked on Amazon.com and quite a few options. I also checked a few stores, but they only carry papaya enzymes. Wonder if it works the same. Did you ever try the tea?

    So glad I'm not the only one with low platelets. Thanks!






  • Ribbonrep
    Ribbonrep Member Posts: 4

    crazy, I am still having issues! After Four days of heavy steroids my platelets went up. Then when I stopped taking they went back down to 95,000. Then I did another round of steroids that decreased over 16 Days my numbers were up to 210,000. Then one week being off they dropped to 170,000. I really need them to normalize so I can start the AI

  • Ribbonrep
    Ribbonrep Member Posts: 4

    Do you have to continue to take the papaya extract or did u stop

  • cjafarm
    cjafarm Member Posts: 3

    At my annual appointment, all blood work was good with the exception of platelets. Previous tests were 334 and this one was 50. Retested using same draw and a new draw. Both were 50. Blood sent for smear and report has the 50 being correct. Pathology did not think it is a marrow problem.

    I don’t trust the Tamaxofen to not be a contributor. Have been taking two years

    Any thoughts apprec

  • sb2015
    sb2015 Member Posts: 3

    Thank you all for sharing your experiences with Tamoxifen. I'm  three years into it and over the last year I started having nose bleeds, a lot more bruising and noticed when I'd nick myself shaving it would take forever for the bleeding to stop. I had a blood test via employer's health fair and platelets came back at 91. Subsequent tests have put me at 99 and just recently at 114; however, recent Gyno appt. showed blood in urine without an infection. My primary and oncologist mention the low counts but no one seems to be overly concerned just yet. It sounds like my levels are lower than some others who have had even more tests run so based on the feedback I'm going to reach back out to the oncologist.  Thanks again, everyone, for sharing. The info. is very helpful....and I don't feel alone.

  • moderators
    moderators Posts: 8,637

    Hi there, sb2015! We're so glad you've found our community, and have already found support during what you're going through. You are most definitely not alone! Please keep us posted on what you hear from your oncologist!

    The Mods

  • ChgoDeb
    ChgoDeb Member Posts: 10

    I quit tamoxifen earlier this year after being on it 4 years. About a year ago, a blood test showed my blood platelets were down significantly. A follow up test about 2 months later showed they were down even further. My oncologist then sent me for additional blood tests, including platelets, and that test showed my numbers all back to normal. Platelets have been normal since. My oncologist had no explanation, which is typical. I asked if it was the tamoxifen & she said I suppose it could be, but not common. All the best to you. Keep us posted.

  • sb2015
    sb2015 Member Posts: 3

    Will definitely post further updates. Thank you!!!


  • sb2015
    sb2015 Member Posts: 3

    All this info is very helpful in educating me in my discussions with my doctors.  I will definitely share any updates.

  • Ribbonrep
    Ribbonrep Member Posts: 4

    my oncologist says it is rare but does happen. My platelets dropped after only 6 weeks and I had a transfusion ! It took 3 months to get them back to normal. Have your doctor check again

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