Jul 18, 2016 05:34AM Nancy2581 wrote:
Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
Posted on: Jul 18, 2016 12:29AM
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.
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Jul 18, 2016 05:34AM Nancy2581 wrote:
Jul 19, 2016 06:26AM Nancy2581 wrote:
Jul 20, 2016 06:21PM CassieCat wrote:
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.
Jul 20, 2016 10:13PM - edited Jul 20, 2016 10:36PM by Nancy2581
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.
Jul 21, 2016 01:58AM CassieCat wrote:
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. :)
Jul 21, 2016 02:14AM KateB79 wrote:
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.
Jul 21, 2016 02:31AM - edited Jul 21, 2016 02:32AM by Nancy2581
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
Jul 21, 2016 04:20AM SpecialK wrote:
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.
Jul 21, 2016 04:50AM Nancy2581 wrote:
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
Dec 1, 2016 08:59PM Ribbonrep wrote:
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.
Dec 1, 2016 10:00PM Moderators wrote:
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!
Dec 1, 2016 10:55PM Nancy2581 wrote:
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
Dec 2, 2016 12:15AM Denise-G wrote:
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,
Dec 16, 2016 11:50PM ChgoDeb wrote:
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!
Jan 7, 2017 02:15AM Ribbonrep wrote:
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
Mar 29, 2018 01:08AM cjafarm wrote:
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
Dec 11, 2018 03:14AM sb2015 wrote:
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.
Dec 11, 2018 05:39AM Moderators wrote:
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!
Dec 11, 2018 03:46PM ChgoDeb wrote:
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.
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