Blood Cancers & Disorders Support Group

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Comments (526)

Hi nohrt4me, Thanks for posting. Yes, there are concerns still with only CALR mutation too I...

https://connect.mayoclinic.org/comment/1225391/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Jan 30, 2025

Hi again @snakebite , Thank you for responding and sharing your situation so fast! Like you,...

https://connect.mayoclinic.org/comment/1345194/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2025

I was originally miss diagnosed with polycythemia Vera. Because I was borderline anemic and I worked...

https://connect.mayoclinic.org/comment/1044688/

Discussion: Anyone have information about late stages of primary myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 3, 2024

Doctors and diagnoses are so confusing. I to have just recently been told I have myelofibrosis...

https://connect.mayoclinic.org/comment/1364020/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Aug 5, 2025

Hi, I found this old post, but yes, my O/H changed my diagnosis from ET on...

https://connect.mayoclinic.org/comment/1297863/

Discussion: Anyone with primary myelofibrosis, low risk, asymptomatic?

Support Group: Blood Cancers & Disorders

Posted: May 5, 2025

Hello,how are you all ?❤️ Well ,my biopsy results:no evidence of granuloma or abnormal lymphoid cell...

https://connect.mayoclinic.org/comment/1049809/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Apr 12, 2024

Hi @mikefromridgefield. First, I’d like to say thank you for your service to our country. Unfortunately,...

https://connect.mayoclinic.org/comment/1435085/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2025

Hi, I saw this on the supraclavicular and finally looked it up. I have had a...

https://connect.mayoclinic.org/comment/1367865/

Discussion: What causes persistent swelling in the left supraclavicular?

Support Group: Blood Cancers & Disorders

Posted: Aug 10, 2025

Hi Steve, Becky has the JAK2 mutation which, from my understanding, makes primary ET more likely,...

https://connect.mayoclinic.org/comment/1154236/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 8, 2024

@vickieannb57 Thank you for your information. Honestly, I would like to have another opinion out of...

https://connect.mayoclinic.org/comment/1412779/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Oct 10, 2025

Bone marrow felt like a quick bee sting for me. Over in 10 minutes. I would...

https://connect.mayoclinic.org/comment/787277/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Dec 21, 2022

@ dax1million Prior to my successful AlloSCT, I was prescribed Vonjo to treat my severe anemia...

https://connect.mayoclinic.org/comment/1398617/

Discussion: My husband has started taking Vonjo, has anyone taken Vonjo?

Support Group: Blood Cancers & Disorders

Posted: Sep 22, 2025

I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on...

https://connect.mayoclinic.org/comment/855780/

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

Support Group: Blood Cancers & Disorders

Posted: May 7, 2023

I realize I’m replying to myself but I hope everyone can see this. I’m starting to...

https://connect.mayoclinic.org/comment/57943/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Jun 23, 2020

My hematologist about 6 yrs ago diagnosed me with primary myelofibrosis at 71 yrs old, after...

https://connect.mayoclinic.org/comment/1217600/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2025

My platelet count was 1,225,000 when I was first diagnosed in Venezuela., S.A. My hematologist there...

https://connect.mayoclinic.org/comment/203950/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2019

Good morning, @davi0937. While you’re waiting for replies from other Myelofibrosis members regarding their bone health,...

https://connect.mayoclinic.org/comment/1536435/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 27 9:16am

Hi @winniegirl It’s really encouraging that your CML responded so well to the Dasatinib to get...

https://connect.mayoclinic.org/comment/1579026/

Discussion: Chronic Myeloid Leukemia now Myelofibrosis: Anyone had both?

Support Group: Blood Cancers & Disorders

Posted: 1 day ago

My gastro doctor was looking to see why I was having abdominal pain and referred me...

https://connect.mayoclinic.org/comment/871268/

Discussion: MGUS: Please, let me know I not alone

Support Group: Blood Cancers & Disorders

Posted: Jun 2, 2023

I was diagnosed in 2001 with PV/ jak2 mutated with blood withdrawals until 2012 Myelofibrosis diagnosed...

https://connect.mayoclinic.org/comment/794654/

Discussion: Any suggestions for chronic shortness of breath with PV?

Support Group: Blood Cancers & Disorders

Posted: Jan 10, 2023

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