Blood Cancers & Disorders Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,483 total results

Comments (1,382)

The meds will work but takes a while to get the dosage correct. My platelets were...

https://connect.mayoclinic.org/comment/1064057/

Discussion: Platelets are too high: What can be done to find root cause?

Support Group: Blood Cancers & Disorders

Posted: May 8, 2024

I was diagnosed low risk MDS two years ago. My platelets have been steadily rising since...

https://connect.mayoclinic.org/comment/827434/

Discussion: Persistently Elevated Platelets Fluctuating

Support Group: Blood Cancers & Disorders

Posted: Mar 17, 2023

Hi Mortysdad… I am very interested in your progress with Pegasys for ET JAK2. I was...

https://connect.mayoclinic.org/comment/807054/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Feb 6, 2023

My husband was diagnosed at 69, a year ago, with Primary Myelofibrosis including Jak2 mutation. A...

https://connect.mayoclinic.org/comment/693147/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 26, 2022

@swalex Thank you for the valuable info on the types of ET and what to expect....

https://connect.mayoclinic.org/comment/1454951/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Dec 7, 2025

@loribmt Thanks for your response. I was diagnosed with ET through routine labs that showed high...

https://connect.mayoclinic.org/comment/1449877/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Nov 30, 2025

Hi lynnevb, Thank you for you useful website information. I started reading it and you are...

https://connect.mayoclinic.org/comment/1216943/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 19, 2025

Hello, dear people....good to meet you.... I'm newly diagnosed PV...and just trying to navigate all this....

https://connect.mayoclinic.org/comment/858478/

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

Support Group: Blood Cancers & Disorders

Posted: May 12, 2023

Sorry for the delayed response, yes…tested for 25 mutations…I have 8.. including Jak2 and ASXL1 but...

https://connect.mayoclinic.org/comment/656013/

Discussion: JAK2 ASXL1 Mutations: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: Nov 20, 2021

I hesitate to jump in here because you're getting kind of a lot of info that's...

https://connect.mayoclinic.org/comment/1397279/

Discussion: My wife tested positive for jak2 and has high platelet count

Support Group: Blood Cancers & Disorders

Posted: Sep 20, 2025

@jodyjazz Starting HU depends on 3 things: Driver mutation, age, and clot history. Some young folks...

https://connect.mayoclinic.org/comment/1523042/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Mar 9 8:07am

@bluebird43 Hello. I too am 78 years Old. I started taking 500 mg HU daily after...

https://connect.mayoclinic.org/comment/1502392/

Discussion: Any suggestions on what time of day is best for taking Hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Feb 10 10:10am

Hi @pennyhedgecoth, I hope you and your husband are doing well! I'm a scientist at a...

https://connect.mayoclinic.org/comment/626170/

Discussion: JAK2 ASXL1 Mutations: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: Aug 13, 2021

I was officially diagnosed with PV in Dec22 after developing high BP when I attempted to...

https://connect.mayoclinic.org/comment/890803/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jul 6, 2023

I also think the numbers aren’t extremely high! The symptoms are spot on with what I’ve...

https://connect.mayoclinic.org/comment/873183/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2023

Welcome, @hudson2019. You’re certainly having your share of medical drama the past couple of years. Lyme...

https://connect.mayoclinic.org/comment/1242045/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: Feb 21, 2025

I think it's important to have a complete blood workup and a bone marrow biopsy and...

https://connect.mayoclinic.org/comment/1162900/

Discussion: JAK2 Mutation and enlarged spleen: What might it mean?

Support Group: Blood Cancers & Disorders

Posted: Oct 26, 2024

I have an appointment in a little over a week. I have already been diagnosed with...

https://connect.mayoclinic.org/comment/1152427/

Discussion: What was your experience with bone marrow biopsy?

Support Group: Blood Cancers & Disorders

Posted: Oct 5, 2024

That's great that your doc sees you every three months at this beginning phase. Gives you...

https://connect.mayoclinic.org/comment/1117199/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Aug 3, 2024

Hello to all, I am new to this and trying to get a better understanding of...

https://connect.mayoclinic.org/comment/231780/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2019