Blood Cancers & Disorders Support Group

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Comments (446)

Hi @rch552320 Your mom was recently diagnosed with thrombocytosis which is an excess of platelets in...

https://connect.mayoclinic.org/comment/1067044/

Discussion: 70 + year women with Thrombosis

Support Group: Blood Cancers & Disorders

Posted: May 13, 2024

I have taken hydroxyurea (started at 500, went to 1000) for a year. I am 78....

https://connect.mayoclinic.org/comment/851807/

Discussion: Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2023

I too have Myelofibrosis I did a bone marrow biopsy prior to starting Jakafi. They did...

https://connect.mayoclinic.org/comment/1099094/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jul 4, 2024

So I turn 70 next year. Transplant has never been mentioned, I hope there is some...

https://connect.mayoclinic.org/comment/1351764/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 19, 2025

I have been on Jakafi for four years. It has been very effective for my skin...

https://connect.mayoclinic.org/comment/1434972/

Discussion: JAKAFI anyone! I've been on it for 5 years

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2025

Hi, I,too, took Hydroxyurea for years to combat high platelet count. About three years I was...

https://connect.mayoclinic.org/comment/50507/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2017

I was put on hydroxyurea when first diagnosed with JAK2/PV about a year ago and side-effects...

https://connect.mayoclinic.org/comment/828776/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2023

Thank you for your response. I had to take Hydrea for 18 months before I was...

https://connect.mayoclinic.org/comment/821980/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2023

Hi Larry, Glad you are doing well on Jakafi. I was on it from 12/22-8/23 in...

https://connect.mayoclinic.org/comment/1013874/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Feb 11, 2024

@albertedward I was moved from HU to Jakafi because a bone marrow biopsy showed elevated TET2...

https://connect.mayoclinic.org/comment/1419147/

Discussion: My mom has Polycythemia Vera: Can PV be managed without phlebotomies?

Support Group: Blood Cancers & Disorders

Posted: Oct 19, 2025

I have just started a plant based diet. I’ve avoided red meats and high iron content...

https://connect.mayoclinic.org/comment/892854/

Discussion: PV positive & Jak2 neg - good thing??

Support Group: Blood Cancers & Disorders

Posted: Jul 9, 2023

@lwengel, as you likely already know, the USA Food and Drug Administration (FDA) approved December, 2014...

https://connect.mayoclinic.org/comment/751307/

Discussion: What's the latest Jakafi (ruxolitinib) for polycythemia vera (PV)?

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2022

Sorry, I didn't quite follow this. Does your husband's doc think the jump to 1,000 was...

https://connect.mayoclinic.org/comment/826408/

Discussion: Essential Thrombocytosis - what's your experience with Jakifi?

Support Group: Blood Cancers & Disorders

Posted: Mar 15, 2023

Yes I have itching again too. Worse before PV diagnosed, then it subsided and disappeared (meds?...

https://connect.mayoclinic.org/comment/817347/

Discussion: PV Itching Not After Bathing

Support Group: Blood Cancers & Disorders

Posted: Feb 26, 2023

I have been on hydroxyurea for 3+ years following my diagnosis of PV. It has been...

https://connect.mayoclinic.org/comment/1179484/

Discussion: Anyone had adverse effects from Jakafi (ruxolitinib) for PV?

Support Group: Blood Cancers & Disorders

Posted: Nov 24, 2024

Interesting about degenerative disc disease and pv. I have lumbar degenerative disc disease confirmed on X-ray,...

https://connect.mayoclinic.org/comment/909445/

Discussion: Anyone dealt with degenerative disk disease with PV diagnosis?

Support Group: Blood Cancers & Disorders

Posted: Aug 8, 2023

Thank you for your post I was wondering if you felt better on the Jakafi? And...

https://connect.mayoclinic.org/comment/1350344/

Discussion: Will my Hydroxyurea dose ever be reduced? Does this happen with ET?

Support Group: Blood Cancers & Disorders

Posted: Jul 17, 2025

I have had PV for five year. I was diagnosed with macular degeneration three years ago....

https://connect.mayoclinic.org/comment/1173886/

Discussion: Are visual disturbances related to ET or hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Nov 15, 2024

Like you, I was initially diagnosed with PV about 6 years ago. My Doctor, at the...

https://connect.mayoclinic.org/comment/1262661/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2025

Leaving it in the Lord's hands is the best thing any of us can do. I...

https://connect.mayoclinic.org/comment/1006798/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Jan 30, 2024

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