Blood Cancers & Disorders Support Group | Page 3

Hi @mirakrye Well, that’s a heckuva way to ring in the new year with a change...

https://connect.mayoclinic.org/comment/1479514/

Discussion: Are there support groups for Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 11 10:03am

@diannerk MF is the abbreviation for Myelofibrosis. It is one of three diseases that are MPN’s...

https://connect.mayoclinic.org/comment/1441704/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 18, 2025

988 when diagnosed with ET on 1/10/25 and 844 when diagnosis changed to Myelofibrosis one 2/10/25

https://connect.mayoclinic.org/comment/1281844/

Discussion: Starting 17th year with ET. What's ahead?

Support Group: Blood Cancers & Disorders

Posted: Apr 14, 2025

@winniegirl My husband has MDS overlapping Myelofibrosis. His hemoglobin is always below 8, so he has...

https://connect.mayoclinic.org/comment/1580917/

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

Support Group: Blood Cancers & Disorders

Posted: May 22 8:02pm

Welcome to Connect, @godschild56. I encourage you to view this more recent discussion where you will...

https://connect.mayoclinic.org/comment/68481/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Feb 23, 2020

Welcome to Connect, @drmshadowrid. It sounds like you’re having good success with Jakafi but that is...

https://connect.mayoclinic.org/comment/1091634/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jun 22, 2024

@crsimon5 - I was diagnosed a year ago. Agree with the prior responses. We have an...

https://connect.mayoclinic.org/comment/1597283/

Discussion: Primary Myelofibrosis: How did you come to terms with the diagnosis?

Support Group: Blood Cancers & Disorders

Posted: Jun 13 2:06pm

@tracypage I hear you! It took me a month to learn “myelofibrosis.” Dont know if I’ll...

https://connect.mayoclinic.org/comment/1459119/

Discussion: Does anyone have neuropathy related to MGUS?

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2025

Good luck at Mayo. Would really appreciate hearing about info. received at Mayo re.. Myelofibrosis. Important...

https://connect.mayoclinic.org/comment/50511/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2017

I’ve been on Hydrea for ten months for lymphoma and myelofibrosis. The only side effect I’ve...

https://connect.mayoclinic.org/comment/1278721/

Discussion: How long before side effects from Hydrea start?

Support Group: Blood Cancers & Disorders

Posted: Apr 10, 2025

I’m facing a bone marrow transplant due to myelofibrosis. I have been taking Jakavi for high...

https://connect.mayoclinic.org/comment/1356198/

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

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

Posted: Jul 25, 2025

@tree7737 JAK 2v617F is an indicator for myelofibrosis, which is my diagnosis - I also had...

https://connect.mayoclinic.org/comment/1518069/

Discussion: Jak2 positive, biopsy next: Does it mean I have blood cancer?

Support Group: Blood Cancers & Disorders

Posted: Mar 2 4:52pm

I corrected the broken link. See this video of Dr. Ayalew Tefferi discussing potential drugs for...

https://connect.mayoclinic.org/comment/132648/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 28, 2020

@drmshadowrider My apologies- the clinical trial is full - not taking additional patients. Do you have...

https://connect.mayoclinic.org/comment/1426044/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2025

@bijou I was offered that trial but did not qualify due to my Chronic Myeloid Leukemia...

https://connect.mayoclinic.org/comment/1580182/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: May 21 7:46pm

Hi @loribmt That was a very good video. I think doctors have a hard time telling...

https://connect.mayoclinic.org/comment/1369265/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2025

I’ve had CMML/myelofibrosis for 10 years so I’ve had several of these. The last one wasn’t...

https://connect.mayoclinic.org/comment/1606014/

Discussion: Posterior Iliac BMB

Support Group: Blood Cancers & Disorders

Posted: Jun 25 10:34am

Hi @carolannt, if you would like to get a second opinion at Mayo Clinic, you can...

https://connect.mayoclinic.org/comment/963448/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 12, 2023

My husband was diagnosed with myelofibrosis about a month and half ago. During a blood work...

https://connect.mayoclinic.org/comment/1252712/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2025

I have myelofibrosis and have been on 10 mg Jakafi for several years. I have found...

https://connect.mayoclinic.org/comment/1379270/

Discussion: Does anyone with Myelofibrosis suffer musscle spasm?

Support Group: Blood Cancers & Disorders

Posted: Aug 25, 2025