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Wed, Feb 27 3:50pm · High platelet count in Blood Cancers & Disorders

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.

Wed, Feb 27 2:42pm · High platelet count in Blood Cancers & Disorders

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.

Wed, Feb 27 1:09pm · High platelet count in Blood Cancers & Disorders

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.

Thu, Jan 24 12:58pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

@esperanzam thank you so much for this information. I pray you get good results from your biopsy. It really helps when I connect with real people concerning ET. It is still so new to my family.

Sun, Jan 20 7:20am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

@misty45 Thank you so very much for sharing your ET experience. My daughter ( age 39) was diagnosed with ET a few months ago- not JAK2 but CALR. She started Hydrea 1 pill – platelets went from 1.5 million to 900,000 added another 1/2 pill every other day – platelets down 800,000. Due to the long term use of Hydrea she changed to interferon. After 3 weeks on interferon her platelets are back to 1.2 million. Can you tell me how many Hydrea pills you take each day? I am thankful you are responding to the Hydrea and no symptoms.

Thu, Jan 10 6:54pm · Essential Thrombocythemia in Blood Cancers & Disorders

Shenriq, I believe the main reason the hemotogist-oncologists changed to interferon was due to her age and remaining on hydroxyurea for the rest of her life. She did not experience any severe side effects from hydroxyurea but was going to need to double the amount because her platelets were not decreasing as fast as her doctors wanted. Today she will receive her third injection of interferon. The first injection caused flu like symptoms for about a day. No real side effects after the second injection. She should have blood work soon. She was also given the choice of just no medication and just checking blood work. She had no idea her platletes were so high until routine blood work – no real symptoms. Thanks for responding.

Fri, Jan 4 2:54pm · Essential Thrombocythemia in Blood Cancers & Disorders

So glad to hear you are not having symptoms and it has not morphed into leukemia. My daughter, was on a low dose of hydroxyurea for 5 months (no real side effects) – her platelets went from 1.5 million to around 800,000. Two weeks ago her dr changed her to interferon. She does not hav JAK2. She has CALR. We are waiting to see how the interferon works. Thanks for posting it helps me to hear from other people loving with ET.

Fri, Jan 4 2:43pm · Essential Thrombocythemia in Blood Cancers & Disorders

Thanks for sharing your experience. My daughter, 39 years old) with routine blood test was diagnosed with ET. Her platelets were over a million. She was started on a low dose of hydroxyurea (June 2018). After seeing a specialist, she changed to interferon ( just received her 2nd dose). The change was due to needing to be on hydroxyurea for the rest of her life and her platelets were down to around 800,000. I also wonder about diet. The first dr said it would not change things. The second dr encouraged a good diet and exercise. Wishing the best for you.