High platelet count

Posted by carlsonte @carlsonte, Wed, Feb 27 12:35pm

My son, who is 46, has an elevated platelet count of 700,000 to 870,000. It has went on for over four years and is only being monitored. Is there more testing other than blood tests that can be done? What are the concerns a person should have with this elevated count?

My daughter, age 39, platelets went to 1.5 million recently. Her blood work showed ET (CALR). She also has acquired Von Willebrand. She was started on HU. She had a bone marrow biopsy which confirmed her blood work. Platletes are decreasing. Good luck.

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@susanellis

My daughter, age 39, platelets went to 1.5 million recently. Her blood work showed ET (CALR). She also has acquired Von Willebrand. She was started on HU. She had a bone marrow biopsy which confirmed her blood work. Platletes are decreasing. Good luck.

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Thank you for the informative. What is HU? I’m glad your daughters platelets are decreasing.

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HU is short for hydroxyurea or Hydrea. It is in pill form and suppresses blood cells, including platelets. Her doctor changed her to interferon due to her young age and needing to take the meds the rest of her life. Do you know if your son has the JAK2, CALR or MPL gene mutation? My daughter had no symptoms. High platelets were found during routine blood work. I was worried sick to begin with. I have connected with several people with this disorder that are living “normal” lives. Again, the best to you and your son.

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@susanellis

HU is short for hydroxyurea or Hydrea. It is in pill form and suppresses blood cells, including platelets. Her doctor changed her to interferon due to her young age and needing to take the meds the rest of her life. Do you know if your son has the JAK2, CALR or MPL gene mutation? My daughter had no symptoms. High platelets were found during routine blood work. I was worried sick to begin with. I have connected with several people with this disorder that are living “normal” lives. Again, the best to you and your son.

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Thank you again. Hs was also found through normal blood tests and has been monitored 5 years. Never tested for genetic mutation. Now they are testing for iron and ultrasound of spleen I am going to suggest further tests. Thanx again.

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I believe with extensive blood work – it can determine if there is a gene mutation. At lease that was the case with my daughter. She also had an ultrasound of the spleen. Another helpful website is MPN Research. A stroke is a concern with excessive platelets. My daughter’s platelets are at 875,000. That is the lowest they have been. Her doctor is positive they will continue to decrease with the interferon. Hope you get answers soon. Waiting is difficult for me.

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Same for me. Thanx for encouragement. My sons are at 870,000, highest they’ve been. Thank you also for web site. I hope your daughters continue to decrease.

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There are a series of genetic tests that can be performed to help determine mutations, as well abone marrow biopsy and aspiration. Depending on the findings, his Hemotologist-Oncologist will likely have him followed, schedule periodic CBCs to track his platelet counts and might also put him on a daily 81mg aspirin. Unsure if he’s had any “episodes,” (clots, strokes or heart attacks), elevated platelets is ofen a wait and watch situation. Many people are a symptomatic, which can be a good thing, but also disarming. A couple years ago, while treating a breast issue, I was formally diagnosed by my Oncologist Hemotologist with Essential Thrombocythemia and fortunately have had no “episodes.” I opted to get additional input from MDs at Sloan Kettering, to mostly get their views on treatment and prognosis. That act was good for my emotional wellness, because blood shows all. There is a ton of information to read, but the condition is rare and not well understood, I keep researching, have joined many ET groups, but have had to remain as calm as possible and take comfort in knowing that I’ve done everything that I can do, so as to not make myself mentally ill behind this hughly uncrertain health challenge.

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Thank you for this information. I will pass this along to my son. I recently found out that he was tested for gene mutation. I know he didn’t have the Jak2, not sure about Calr.

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Well my sons spleen ultra sound was normal as well as his iron count. You are right about disarming. Hematologist said see you in three months for CBC blood work. More of wait and see.

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Hi again,
To add to my post from 3/1 and address the concerns you posted today, there are 3 significant concerns for those with elevated platelets: blood clots, stroke and heart attack.
Like your son, I am being monitored and taking 1 81mg aspirin daily. This is a great place to be, all things considered. During the course of being monitored and my platelets begin to elevate to a significantly higher rate, then I'd need to begin taking Hydroxeurea, lower my count. Provided HU is effective, it will need to be continued forever, so not needing it is a wonderful thing.

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@shenriq

Hi again,
To add to my post from 3/1 and address the concerns you posted today, there are 3 significant concerns for those with elevated platelets: blood clots, stroke and heart attack.
Like your son, I am being monitored and taking 1 81mg aspirin daily. This is a great place to be, all things considered. During the course of being monitored and my platelets begin to elevate to a significantly higher rate, then I'd need to begin taking Hydroxeurea, lower my count. Provided HU is effective, it will need to be continued forever, so not needing it is a wonderful thing.

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Hi, my son also takes 81 mg aspirin and nothing else. I just hope his platelets don’t keep increasing from current 870,000. I agree not having to take Hu is a good thing. I have no idea what possible side affects it would have. I’m not sure at what level a person would have to take Hu? We’ll continue to wait and see. Good luck to you also.

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@carlsonte

Thank you for this information. I will pass this along to my son. I recently found out that he was tested for gene mutation. I know he didn’t have the Jak2, not sure about Calr.

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I had genetic testing at GW University's Cancer Center. Last summer, I worked with Memorial Sloan Kettering Cancer Center (MSKCC) and an additional panel of advanced genetic tests — 400, were performed, to uncover gene mutations.

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@shenriq

I had genetic testing at GW University's Cancer Center. Last summer, I worked with Memorial Sloan Kettering Cancer Center (MSKCC) and an additional panel of advanced genetic tests — 400, were performed, to uncover gene mutations.

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Sounds very thorough. Did the testing reveal anything new? Or is it still and wait and see?

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Hi, I was recently diagnosed with Essential Thrombocytoss (ET) and Jak2 mutation, after elevated platelets over a period of a year. This through extensive blood testing. I have been on Hydrea 3 times a week at 500mg each and daily 81mg aspirin. I don't feel any different before or after diagnosis and have to look at it as a positive not a negative. I will die with the disease not from it! I strongly advise your son to seek another opinion so that he could benefit from medication to lower the platelets. Well wishes to him!

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At that count I started taking aspirin, and check up for blood test platelets count and that was it. Hope this helps.

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