Blood Cancers & Disorders Support Group

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Comments (530)

After my JAK2 was found my O/H ordered a bone marrow biopsy which could be done...

https://connect.mayoclinic.org/comment/1270695/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 31, 2025

I was diagnosed with ET and put on 500 mg a day to lower platelets from...

https://connect.mayoclinic.org/comment/1081405/

Discussion: How fast do you start to feel hydroxyurea symptoms?

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2024

@1pearl my UCLA doctor is very nice but when I selected him we did not know...

https://connect.mayoclinic.org/comment/1421368/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 22, 2025

Hello friend! I feel your physical and emotional pain and distress ! I am in process...

https://connect.mayoclinic.org/comment/1369077/

Discussion: AML: Let's connect and share what helps stay positive

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2025

My wife just tested positive for JAK2 on Dec 15th, after blood work on Dec 8th...

https://connect.mayoclinic.org/comment/994115/

Discussion: Essential Thrombocytosis: What amount of hydroxy do you take?

Support Group: Blood Cancers & Disorders

Posted: Jan 8, 2024

Hi @lorieliebrock. Welcome to Connect. You came to the right place to be embraced by other...

https://connect.mayoclinic.org/comment/1518186/

Discussion: Anyone go through duv/romi treatment before an allogenic BMT?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Mar 2 8:51pm

I was diagnosed with ET with Jax 2 mutation, mild myelofibrosis, a year ago after a...

https://connect.mayoclinic.org/comment/1411546/

Discussion: Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

Support Group: Blood Cancers & Disorders

Posted: Oct 8, 2025

Hi @samlupowitz , I had to look up what ECD is because I never heard of...

https://connect.mayoclinic.org/comment/1504945/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 13 1:35pm

hello. I was diagnosed with ET over 25 years ago, while young and in the Service...

https://connect.mayoclinic.org/comment/890151/

Discussion: Essential Thrombocythemia (ET): foods, diet, nutrition?

Support Group: Blood Cancers & Disorders

Posted: Jul 4, 2023

I was diagnosed with secondary ET myelofibrosis a few years ago after living with ET for...

https://connect.mayoclinic.org/comment/1348100/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 14, 2025

@juniperjgin Thank you so much! Yes it's true that the extra long wait time is simply...

https://connect.mayoclinic.org/comment/1113190/

Discussion: 2 weeks for BMB results now Pathology is adding several weeks more

Support Group: Blood Cancers & Disorders

Posted: Jul 28, 2024

Hi @panamsandy , I was found to have high platelets on routine lab work after routine...

https://connect.mayoclinic.org/comment/1357204/

Discussion: Is it common for platelet level to drop?

Support Group: Blood Cancers & Disorders

Posted: Jul 26, 2025

Good questions. I’m not a medical doctor. My career was at the diagnostic end (lab). Therefore,...

https://connect.mayoclinic.org/comment/981500/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Dec 16, 2023

The problem is skinney doesn't stop. My wife usually wears a size 8 and now finds...

https://connect.mayoclinic.org/comment/132652/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Aug 3, 2020

Thank you so much! My team up in Portland at OHSU is great and have informed...

https://connect.mayoclinic.org/comment/1324221/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Jun 10, 2025

Hi @gigi05 You’re getting some great question suggestions from our helpful members! I can toss in...

https://connect.mayoclinic.org/comment/1272546/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2025

My mom(75yr old) was recently diagnosed with AML-M7 (acute megakaryoblastic leukemia) which progressed from JAK2 myelofibrosis...

https://connect.mayoclinic.org/comment/1250454/

Discussion: Acute Myeloid Leukemia (AML) - Treatment of 75 year old is working!

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2025

Hi @gajokos, It is nice to meet you. I never knew what blood cancers even were...

https://connect.mayoclinic.org/comment/1486812/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 19 7:03pm

Hi cindy e m, Thank you so much for posting. If you do not mind sharing,...

https://connect.mayoclinic.org/comment/1298131/

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

Support Group: Blood Cancers & Disorders

Posted: May 6, 2025

Hi @sap21981, from my research and understanding, a stem cell transplant for PV is rarely used....

https://connect.mayoclinic.org/comment/893527/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2023

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