Blood Cancers & Disorders Support Group

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Comments (528)

Bonnie, You will be amazed at how it will all come together with planning. Having such...

https://connect.mayoclinic.org/comment/1324245/

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

Thank you , your post was a Godsend. After a down day yesterday with my husband’s...

https://connect.mayoclinic.org/comment/1252374/

Discussion: AML successful treatment

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2025

Hi @casevin7 JAK2 is an acquired mutation so it is possible to develop it in the...

https://connect.mayoclinic.org/comment/870437/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 1, 2023

I would recommend that anyone who has an mpn including PV, ET, and Myelofibrosis consult an...

https://connect.mayoclinic.org/comment/1501571/

Discussion: 71 year old female diagnosed 6 month ago with PV

Support Group: Blood Cancers & Disorders

Posted: Feb 9 9:52am

I haven’t experienced any of the symptoms mentioned for ET or myelofibrosis and went through menopause...

https://connect.mayoclinic.org/comment/1358557/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 28, 2025

@toste I am so sorry to hear about your husband's diagnosis. Yes, many of us with...

https://connect.mayoclinic.org/comment/1493896/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 30 6:13am

Diagnosed with prefibrotic myelofibrosis 7/25. 78 years old with JAK2, ASXL1, ZRSR2 & TET2 mutations. Platelets...

https://connect.mayoclinic.org/comment/1366821/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Aug 9, 2025

Hi @bmarkable. I believe the medication Dr. Tefferi was talking about in the video is Imetelstat....

https://connect.mayoclinic.org/comment/1257278/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 13, 2025

Yes . I had this for 10 1/2 years and used same medication until it no...

https://connect.mayoclinic.org/comment/50532/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 2, 2017

Hi Nellieblue, My husband has been on Tamsulosin for his Myelofibrosis two capsules a day for...

https://connect.mayoclinic.org/comment/101841/

Discussion: CLL treatment that concentrates in shrinking the spleen without undergoing chemo

Support Group: Blood Cancers & Disorders

Posted: May 28, 2016

Hi @snakebite, If you do not mind my asking, did you have any symptoms when you...

https://connect.mayoclinic.org/comment/1345090/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2025

I am also inerested in what medication you are currently taking. I was on Anagrelide for...

https://connect.mayoclinic.org/comment/1203927/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2025

@scottmatteo I, too, have myelofibrosis. diagnosed by Mayo almost 6 years ago. But at that time,...

https://connect.mayoclinic.org/comment/657916/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 28, 2021

Good morning, @tim376. You were very recently diagnosed with myelofibrosis, (MF) so I’m sure you have...

https://connect.mayoclinic.org/comment/1502334/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 10 9:17am

I don't recall if you mentioned using NAC or glutathione. Individually they offer important benefits. Together,...

https://connect.mayoclinic.org/comment/132659/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Sep 7, 2020

@lyd0218 My personal experience The symptoms you mentioned I had and suffered from them ! I...

https://connect.mayoclinic.org/comment/1421550/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 23, 2025

Hi circawdm, I would agree with what you said if one has ET. My O/H told...

https://connect.mayoclinic.org/comment/1316170/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: May 30, 2025

I am beginning to think my mom had this and no one told us. She lived...

https://connect.mayoclinic.org/comment/926244/

Discussion: PV and peripheral artery disease PAD

Support Group: Blood Cancers & Disorders

Posted: Sep 8, 2023

@1pearl Hello friends! Thank you for your posts ! I am battling rare MPN CALLED MYELOFIBROSIS!!...

https://connect.mayoclinic.org/comment/1433127/

Discussion: Asked chatGPT about how long to be on treatment for Multiple Myeloma

Support Group: Blood Cancers & Disorders

Posted: Nov 7, 2025

I feel for you, I am in the same situation. My husband was diagnosed with MF...

https://connect.mayoclinic.org/comment/1520690/

Discussion: This is new, overwhelming. Wife is diagnosed with PV, we need support

Support Group: Blood Cancers & Disorders

Posted: Mar 6 6:46am

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