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

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

@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

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

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

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

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

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

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

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

@nisi I have been taking Jakafi (Ruxolitinib 10 mg. 2x per day) for about 6 months...

https://connect.mayoclinic.org/comment/1524013/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 10 1:08pm

I was diagnosed with a myelodysplastic disorder over a year ago. Last fall a bone marrow...

https://connect.mayoclinic.org/comment/1104835/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 13, 2024

Hi nohrt4me, Thank you for posting. I totally agree with you that we have to work...

https://connect.mayoclinic.org/comment/1313253/

Discussion: Getting nowhere with current Hematologist

Support Group: Blood Cancers & Disorders

Posted: May 26, 2025

I had terrible thorax itching. Xanax stops it fast!!! And my itching was more than likely...

https://connect.mayoclinic.org/comment/905705/

Discussion: PV Itching Not After Bathing

Support Group: Blood Cancers & Disorders

Posted: Aug 1, 2023

I guess it depends on the hematologist/oncologist’s experience. I was never offered the option - I...

https://connect.mayoclinic.org/comment/877816/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2023

I was diagnosed with myelofibrosis a year ago, along with B-cell lymphoma. I’m taking Hydroxyurea with...

https://connect.mayoclinic.org/comment/1264930/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 23, 2025

Amanda-I am 74 & was diagnosed with myelofibrosis in 2016. Just interested in overall discussions of...

https://connect.mayoclinic.org/comment/674388/

Discussion: Massive spleen and dangerous low platelet count

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2022