Im 64 and my blood platelets have been in the low 530-550 range for yr

Posted by mrkevinl @mrkevinl, Jan 11 10:44am

Im a 64 year old man that is in good health. Could afford to lose a few pounds but its difficult. I do not smoke. I have been taking a baby aspirin for over a year because my blood platelet count was 538. A physical for my job showed my platelets at 531 so my doctor referred me to a Hematologist. All my blood tests were normal except my platelets are still 530. She ordered a Bone Marrow Biopsy. Im very scared and I dont know what she thinks I have. Something to do with risk for clots, stroke and heart attack.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

When I first saw my heme doc little over a year ago, he said not to look it up. But, when I do look it up (at that time only ET), know that most of what I’d read online had nothing to do w/me!
Now we know I have ET w/JAK2. Like others have said, it’s a condition that many have had for decades.
Good help (and comfort) on this site! Also look up MPN Foundation. Truth, research, no hype.
Good luck!

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@mrkevinl

Thank you for your reply & for sharing. It sounds like you & I have the same problem. No I haven’t had genetic testing. I don’t know if that would provide anything useful. I have heard this disorder is very rare. I stated at 527 after my bone marrow biopsy. I started with HU 500mg daily for a month & my platelets went down & up over 4 weeks. Doctor told me to try 1000mg per day & now my results are down to 411. I’m happy with that at soon to be 65. My doctor said that she thinks the outcome will be ok & that majority live normal lives with ET.

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If you have ET, genetic tests help determine your clot risk. I am 70. I have the CALR mutation. CALR patients are less likely to clot than JAK2 patients. Some docs, as a result, don't prescribe HU for CALR patients until they are approaching platelet levels over 700.

In the "olden days" when my dad had ET (early 2000s), people were often diagnosed only after a clot had been found, and they were front-loaded with high doses of HU. Now that more driver mutations have been discovered, care can be more finely tuned.

At some point ask your doc about mutations and clot risks. If he looks blank, he may not be very familiar with ET, and you might want to eventually get a second opinion on your HU dosing at a bigger research-oriented hospital.

It's great that you have no HU side effects and that you are still working!

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Good Morning,
I'm in the beginning stages of this journey as well. I'm female, just turned 66. With a platelet count of 583 I was referred to a Hematologist/Oncologist following my yearly physical in Feb. I am waiting for my biopsy appointment date. I can see on my Lab's portal all of my blood work over the last 10 years. Never really studied it before as I had no alerts from my primary care doctors ( there were a few over the years). I discovered my platelets have been all over the place during those 10 years, from 400 to that high of 583 but none of the doctors referred me to a specialist until this year. I'm assuming that's because of my now, advanced age, haha! and not their negligence! I do not have any of the 3 mutations so wondering exactly where this is pointing my doctor. I am also healthy, working, exercising daily and trying my best to eat a Mediterranean diet. the Bone Marrow Biopsy is scary, not so much because of the process of the test but because of what info it may give. It is what it is, I suppose and it's best to learn what we're up against. I will follow your posts. Hoping for good news for us both!

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@doglover2

Good Morning,
I'm in the beginning stages of this journey as well. I'm female, just turned 66. With a platelet count of 583 I was referred to a Hematologist/Oncologist following my yearly physical in Feb. I am waiting for my biopsy appointment date. I can see on my Lab's portal all of my blood work over the last 10 years. Never really studied it before as I had no alerts from my primary care doctors ( there were a few over the years). I discovered my platelets have been all over the place during those 10 years, from 400 to that high of 583 but none of the doctors referred me to a specialist until this year. I'm assuming that's because of my now, advanced age, haha! and not their negligence! I do not have any of the 3 mutations so wondering exactly where this is pointing my doctor. I am also healthy, working, exercising daily and trying my best to eat a Mediterranean diet. the Bone Marrow Biopsy is scary, not so much because of the process of the test but because of what info it may give. It is what it is, I suppose and it's best to learn what we're up against. I will follow your posts. Hoping for good news for us both!

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Just over 5 weeks ago, yours & my story were nearly identical. My primary care doctor put me on baby aspirin about 3yrs ago when my platelets were 572 & told me not to worry. Probably related to an infection of some kind due to my job requires working with my hands. I’m forever cutting, scraping, doing something with them. I didn’t think much about it at the time I went in for a physical & received blood work & the platelets were still around 600. He referred me to a hematologist & she did another blood test which showed the platelets around 572. She explained to me that she suspected ET & suggested a bone marrow biopsy. When I heard the word cancer, I was floored. She explained how rare this disorder is & the dangers from it if left untreated. She said that most patients will live a normal life with this disease. I went in for the biopsy, which is no big deal. In & out in a little over 2hrs. The biopsy confirmed the ET & now it’s just getting the right dose of hydroxyurea. I started at 500mg but it didn’t help much & she increased it to a 1000mg per day. My last test showed my platelets are down to 411
& I have no side effects. What I’d suggest to you is to try to stay off Google & stay upbeat. I know it’s hard. I still have trouble with it but it’s the hand we have been dealt & must play. I wish you all the best & if you need an ear, please let me know.

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