Blood Cancers & Disorders Support Group

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Comments (527)

Reply by @missypurtee THANK YOU FOR YOUR LOVE AND CONCERN; 1.Cold Induced urticaria, 2. Cold Anaphylaxis...

https://connect.mayoclinic.org/comment/804071/

Discussion: Newly Diagnosed CLL Patients: Do you struggle with symptoms?

Support Group: Blood Cancers & Disorders

Posted: Jan 30, 2023

Dear Tokyolin: I am “flynnconn” and you can check out my specifics in 2 previous posts...

https://connect.mayoclinic.org/comment/882771/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 22, 2023

Welcome to Connect, @davi0937 You’re going to be in terrific hands with the hematology dept at...

https://connect.mayoclinic.org/comment/1338707/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jun 30, 2025

Hi Betsy, If all goes as planned the anemia you suffer from should be resolved after...

https://connect.mayoclinic.org/comment/1370930/

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

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

Posted: Aug 14, 2025

Hi cdurbin, I am sorry your BMB was painful. I must have had an experienced nurse...

https://connect.mayoclinic.org/comment/1277147/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 8, 2025

Hi, I am not sure if I have ET or myelofibrosis as my oncologist/hematologist seems to...

https://connect.mayoclinic.org/comment/1252507/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2025

Also, I might add that a few years ago they thought it may have morphed into...

https://connect.mayoclinic.org/comment/1051289/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 15, 2024

Welcome to Connect @kwmotley Reading through your comments it looks like you’re taking a daily aspirin...

https://connect.mayoclinic.org/comment/974721/

Discussion: Jak 2 mutations

Support Group: Blood Cancers & Disorders

Posted: Dec 4, 2023

Good morning @ruthiek519 Well, of all the gifts you could have gotten for your 72nd b-day,...

https://connect.mayoclinic.org/comment/1312373/

Discussion: Getting nowhere with current Hematologist

Support Group: Blood Cancers & Disorders

Posted: May 25, 2025

Welcome to Connect @jv4430. There are a number bone marrow disorders related to the JAK2 gene...

https://connect.mayoclinic.org/comment/969785/

Discussion: JAK2 V617F positive, now what?

Support Group: Blood Cancers & Disorders

Posted: Nov 24, 2023

@ray666 While you may have already made your decision, I'll offer my experience in case it...

https://connect.mayoclinic.org/comment/1387289/

Discussion: High Risk Myelodysplastic Syndrome: What to Expect?

Support Group: Blood Cancers & Disorders

Posted: Sep 5, 2025

Hi@nohrt4me, My O/H told me Kaiser does not have MPN specialists so she referred me to...

https://connect.mayoclinic.org/comment/1364165/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Aug 5, 2025

Hi @riveramaya2009, I totally appreciate your sharing your situation and what you thought was best to...

https://connect.mayoclinic.org/comment/1429510/

Discussion: Hydroxyurea vs Agrilyn: Anyone switched from HU to Agrilyn?

Support Group: Blood Cancers & Disorders

Posted: Nov 2, 2025

I was just diagnosed last week with ET (CALR mutation) as a result of a marrow...

https://connect.mayoclinic.org/comment/776073/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Nov 21, 2022

According to the Leukemia and Lymphoma Society and by the opinion of most doctors in the...

https://connect.mayoclinic.org/comment/1263596/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Mar 21, 2025

Hi, Vicky, I am 70, CALR+, have had ET for about 15 years. Doing OK, no...

https://connect.mayoclinic.org/comment/1103555/

Discussion: HU & Titanium Oxide

Support Group: Blood Cancers & Disorders

Posted: Jul 11, 2024

1pearl, wishing you well with your bone marrow biopsy. Learning more about your condition is so...

https://connect.mayoclinic.org/comment/1225947/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Jan 31, 2025

Not sure if this is the place to write a follow up note. I have written...

https://connect.mayoclinic.org/comment/194314/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Apr 23, 2019

Hello Colleen, Thank you for your reply. Looking forward to msg someone who has used this...

https://connect.mayoclinic.org/comment/969263/

Discussion: VonJo (pacritinib) effects

Support Group: Blood Cancers & Disorders

Posted: Nov 22, 2023

Hello @akeytoo, I don’t think anyone is fond of chemo treatments but they can be absolutely...

https://connect.mayoclinic.org/comment/911908/

Discussion: BESREMi anyone?

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2023

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