Blood Cancers & Disorders Support Group

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Comments (224)

I would be happy to assist in anyway that I can. I am one year into...

https://connect.mayoclinic.org/comment/719904/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 22, 2022

Welcome, @rspriggle. I can only imagine your shock of receiving the diagnosis of primary myelofibrosis, especially...

https://connect.mayoclinic.org/comment/616932/

Discussion: Primary Myelofibrosis diagnosis in 40’s

Support Group: Blood Cancers & Disorders

Posted: Jul 15, 2021

Thank you so much for your positive comments on Ojjaara. For two years I have not...

https://connect.mayoclinic.org/comment/1167877/

Discussion: Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?

Support Group: Blood Cancers & Disorders

Posted: Nov 4 9:49am

I too have Myelofibrosis I did a bone marrow biopsy prior to starting Jakafi. They did...

https://connect.mayoclinic.org/comment/1099094/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jul 4 10:02am

I was diagnosed by Mayo with myelofibrosis several years ago. Since then, various clinics have repeatedly...

https://connect.mayoclinic.org/comment/699543/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Apr 16, 2022

My wife was diagnosed with MF 4 months ago due to MPL mutation. We just heard...

https://connect.mayoclinic.org/comment/132606/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2017

Hi @mahmoudbakry. Sometimes diagnosing a blood condition can be like unraveling a complicated mystery with an...

https://connect.mayoclinic.org/comment/1044404/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Apr 2 7:12pm

:Yes I am being treated for myelofibrosis with Jakafi. I was never able to take the...

https://connect.mayoclinic.org/comment/1099091/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jul 4 9:57am

Hi @wellness3070. I'd also like to introduce you to other members who have myelofibrosis or are...

https://connect.mayoclinic.org/comment/132597/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Jan 5, 2017

Welcome to Connect, @dot65. I moved your message to this discussion so you could meet others...

https://connect.mayoclinic.org/comment/132608/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Feb 24, 2017

NAC sounds interesting. My pains are not from myelofibrosis. I don't have bone pain these days....

https://connect.mayoclinic.org/comment/132662/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Sep 7, 2020

Have you also been given Allopurinol to prevent gout and cramps - stops the build up...

https://connect.mayoclinic.org/comment/943396/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 7, 2023

@pesterthief, I found this information: "Primary idiopathic myelofibrosis is a rare myeloproliferative condition which can present...

https://connect.mayoclinic.org/comment/1168109/

Discussion: Any suggestions on what time of day is best for taking Hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Nov 4 3:46pm

Hi Steve, I couldn't find any evidence-based mentions of serrapeptase being used to help treat myelofibrosis....

https://connect.mayoclinic.org/comment/132609/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Feb 24, 2017

Recently diagnosed with essential thrombocythemia and primary myelofibrosis with MPL mutation. Blood transfusions and iron infusions...

https://connect.mayoclinic.org/comment/764111/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 22, 2022

Hi, I,too, took Hydroxyurea for years to combat high platelet count. About three years I was...

https://connect.mayoclinic.org/comment/50507/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2017

To determine if I still had polycythemia vera or myelofibrosis a bone marrow biopsy was done...

https://connect.mayoclinic.org/comment/876362/

Discussion: Delayed pain after bone marrow biopsy??

Support Group: Blood Cancers & Disorders

Posted: Jun 11, 2023

Wow. I'm terrible at this posting stuff I guess. I just saw that you had asked...

https://connect.mayoclinic.org/comment/1039752/

Discussion: High platelets, Jak2, ET, and pre-fib new diagnosis

Support Group: Blood Cancers & Disorders

Posted: Mar 25 3:09am

I have just been diagnosed with Myelodysplastic Syndromes ( MDS-a bone marrow decease) & Myelofibrosis (MF-blood...

https://connect.mayoclinic.org/comment/194288/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 20, 2019

Welcome to Connect, @ronegeorge. Thank you for sharing your encouraging experience with using Hydroxyurea to control...

https://connect.mayoclinic.org/comment/1081066/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 5 6:39am