Blood Cancers & Disorders Support Group

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Comments (224)

I was diagnosed with Myelofibrosis almost 2 1/2 years ago. Lost 50 pounds, have tremendous fatigue,...

https://connect.mayoclinic.org/comment/1005596/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Jan 29 6:43am

Has anyone heard of new approved treatments for dry bone marrow or myelofibrosis - not stem...

https://connect.mayoclinic.org/comment/1049344/

Discussion: Propofol for bone marrow biopsy

Support Group: Blood Cancers & Disorders

Posted: Apr 12 7:57am

Welcome @create. I'm tagging a few members who may be familiar with your unique combination of...

https://connect.mayoclinic.org/comment/761571/

Discussion: Myeloproliferative neoplasm Anyone else have a similar diagnoses?

Support Group: Blood Cancers & Disorders

Posted: Oct 15, 2022

Hi @trillium, while many patients with polycythemia vera (PV), essential thrombocythemia (ET) or myelofibrosis (MF) have...

https://connect.mayoclinic.org/comment/336437/

Discussion: JAK2 negative with high platelets

Support Group: Heart & Blood Health

Posted: Mar 2, 2021

Thanks for reply. I, too, am on Jakafi and have been treated for condition for about...

https://connect.mayoclinic.org/comment/132600/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Jan 5, 2017

I am not an expert, but I would think a BM bx would allow the practitioner...

https://connect.mayoclinic.org/comment/877587/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2023

Thanks for catching that. Yes, I have primary myelofibrosis. I have an oncologist that is holding...

https://connect.mayoclinic.org/comment/1043713/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 1 12:59pm

Bad news last time at the doc office, the doctor told me that I suffer from...

https://connect.mayoclinic.org/comment/1044397/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Apr 2 6:46pm

Welcome to Connect, @sunbird09 Over time, some people with PV may develop MF. This occurs if...

https://connect.mayoclinic.org/comment/1099168/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Jul 4 11:34am

Hi @pearly, Please note that the reply above was from @gael, who is also living with...

https://connect.mayoclinic.org/comment/50536/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2017

Thank you so much for proving this link, sdduan. It's really interesting to hear high-level MPN...

https://connect.mayoclinic.org/comment/1166064/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Nov 1 7:50am

Had the uncontrollable itching about 5 years ago. No specialist had any idea what the cause...

https://connect.mayoclinic.org/comment/802925/

Discussion: Myelofibrosis or long Covid?

Support Group: Blood Cancers & Disorders

Posted: Jan 28, 2023

After visiting the hematologist at Fred Hutch in Seattle, she sent me a letter informing me...

https://connect.mayoclinic.org/comment/1156023/

Discussion: After 3 months on hydroxyurea, I am going to ask to switch to Besremi

Support Group: Blood Cancers & Disorders

Posted: Oct 12 6:30pm

Myelofibrosis (Diagnosed by Mayo 7 years ago) is one of those conditions which many doctors know...

https://connect.mayoclinic.org/comment/714720/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Jun 6, 2022

Hi @eferret. Sounds like you have a good team behind you with your local hematologist and...

https://connect.mayoclinic.org/comment/1156861/

Discussion: After 3 months on hydroxyurea, I am going to ask to switch to Besremi

Support Group: Blood Cancers & Disorders

Posted: Oct 14 9:29am

The way I understand it MPN specialists are hematologists with sub speciality of MPN’s such as...

https://connect.mayoclinic.org/comment/797781/

Discussion: High platelet count: What does this mean?

Support Group: Blood Cancers & Disorders

Posted: Jan 16, 2023

Sounds like your in good hands. Yes, the liposomal Glutathione form is out front. It's recommended...

https://connect.mayoclinic.org/comment/132661/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Sep 7, 2020

I am seeing Dr. Teffari at Mayo Clinic. He's the lead specialist in the world for...

https://connect.mayoclinic.org/comment/1194113/

Discussion: Primary Myelofibrosis: Continue watch & wait? 2nd opinion?

Support Group: Blood Cancers & Disorders

Posted: 2 days ago

I read that bone marrow transplants are Only for the MPN myelofibrosis I have not heard...

https://connect.mayoclinic.org/comment/57941/

Discussion: Essential thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Jun 21, 2020

Jakafi is not chemo medicine as such. It is treatment targeted for PV and myelofibrosis; it...

https://connect.mayoclinic.org/comment/889987/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jul 4, 2023