Blood Cancers & Disorders Support Group

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Comments (1,383)

I started out taking HU 1x week for a month, 2x week for 8 months, and...

https://connect.mayoclinic.org/comment/1006203/

Discussion: What are most common side effects when starting HU (Hydroxyurea)?

Support Group: Blood Cancers & Disorders

Posted: Jan 29, 2024

Your platelet level must be fairly low if starting HU is being left up to you....

https://connect.mayoclinic.org/comment/995371/

Discussion: What are pros of hydroxyurea vs other methods of lowering platelets?

Support Group: Blood Cancers & Disorders

Posted: Jan 11, 2024

I agree with irishnanny3 but wonder why you’re asking? You’ve obviously had the blood work done....

https://connect.mayoclinic.org/comment/1369916/

Discussion: polycythemia Vera

Support Group: Blood Cancers & Disorders

Posted: Aug 13, 2025

Hi Mikemp, I experienced the same fluctuations. I was diagnosed with ET November 2022. Started out...

https://connect.mayoclinic.org/comment/1275362/

Discussion: My platelet count has increased after a year on Hydroxyurea (HU)

Support Group: Blood Cancers & Disorders

Posted: Apr 6, 2025

Hi Gary. You’re right, statistically women do appear to outnumber men with ET cases. So, welcome...

https://connect.mayoclinic.org/comment/1117103/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Aug 3, 2024

Hi @amyb52. Welcome to Connect. This is a great forum for meeting other members who share...

https://connect.mayoclinic.org/comment/882031/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 20, 2023

Jackt00, To answer your question…when the headaches started I had some dizziness and a first ever...

https://connect.mayoclinic.org/comment/830153/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 22, 2023

Hello, I have had PV with JAK2 for about 5 years. I work and live a...

https://connect.mayoclinic.org/comment/812063/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Feb 15, 2023

Hi Eileen, I have been on Pegasus for 7 weeks, at a dosage of 45 mcg...

https://connect.mayoclinic.org/comment/807552/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2023

Were you originally diagnosed by extensive labs and a bone marrow biopsy? Are you seeing an...

https://connect.mayoclinic.org/comment/783396/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Dec 10, 2022

I have had elevated RBC, WBC, Hemocrit and Hemaglobin for almost three years but am negative...

https://connect.mayoclinic.org/comment/1257432/

Discussion: JAK2 negative test results

Support Group: Blood Cancers & Disorders

Posted: Mar 13, 2025

Hi, I have ET JAK2, but am not taking HU due to my age and other...

https://connect.mayoclinic.org/comment/830670/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 23, 2023

Hi I was newly diagnosed with this and am waiting to start on medication. I am...

https://connect.mayoclinic.org/comment/821798/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2023

@cmchesh Hello. Welcome. I’m 77 (until next week and it counts!) and was diagnosed with JAK2/PV...

https://connect.mayoclinic.org/comment/1453005/

Discussion: Polycythemia vera (PV): Does altitude matter?

Support Group: Blood Cancers & Disorders

Posted: Dec 4, 2025

Hi Arlene, I was diagnosed with ET Jak2 Nov. 2022. I am taking 1000 mg per...

https://connect.mayoclinic.org/comment/1204752/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Jan 5, 2025

@dewz13 I’m still trying to wrap my head around it all. I’ve probably had it for...

https://connect.mayoclinic.org/comment/1526572/

Discussion: Newly Diagnosed Essential Thrombocytosis

Support Group: Blood Cancers & Disorders

Posted: Mar 14 8:42am

@mmkennedy I had a mild heart attack in August 2023, (probably caused by high platelets -...

https://connect.mayoclinic.org/comment/1512461/

Discussion: Anyone else have ET (thrombocytosis) with no gene mutation?

Support Group: Blood Cancers & Disorders

Posted: Feb 23 2:14am

@kat260 if you have any autoimmune conditions, proceed with caution with interferons. It can make those...

https://connect.mayoclinic.org/comment/1522250/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Mar 8 8:31am

I didn't lose any hair (other than normal thinning with old age). I had some gut...

https://connect.mayoclinic.org/comment/1510436/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 20 11:30am

I also have ET JAK2 diagnosed in June 2023 at age 72. Platelets were higher than...

https://connect.mayoclinic.org/comment/1312680/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: May 25, 2025