Blood Cancers & Disorders Support Group

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Comments (525)

I have PV with the JAK22 postive mutation. I Noticed over time that my Hemoglobin and...

https://connect.mayoclinic.org/comment/1402845/

Discussion: I am curious: What symptoms did everyone have in the beginning for PV?

Support Group: Blood Cancers & Disorders

Posted: Sep 27, 2025

Well Jackie, if you’ve ever read about me and my various post, I must have the...

https://connect.mayoclinic.org/comment/728920/

Discussion: Non Hodgkin's Lymphoma- Watch & Wait Approach

Support Group: Blood Cancers & Disorders

Posted: Jul 20, 2022

I was diagnosed with Waldenstrom macroglobulinemia July of 2021. I went to the emergency room for...

https://connect.mayoclinic.org/comment/663018/

Discussion: Waldenstrom macroglobulinemia: What to expect during watch & wait?

Support Group: Blood Cancers & Disorders

Posted: Dec 16, 2021

Hi @caregiverx2. I know the stress level is high right now for both you and your...

https://connect.mayoclinic.org/comment/1117361/

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

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

Posted: Aug 3, 2024

Yes Colleen. My hematologist/oncologist, Dr. Monte Martin (associated with Norton Cancer Center,) told me to go...

https://connect.mayoclinic.org/comment/752232/

Discussion: Tasigna side effect? How do I stop an itchy scalp and rash?

Support Group: Blood Cancers & Disorders

Posted: Sep 21, 2022

Posted by dmiles @dmiles, I have 9 rare disease (few since birth), I Just have symptoms...

https://connect.mayoclinic.org/comment/802779/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 28, 2023

I am so sorry for all your problems. But don't be devasated. It is a very...

https://connect.mayoclinic.org/comment/74585/

Discussion: MGUS: Please, let me know I not alone

Support Group: Blood Cancers & Disorders

Posted: Oct 28, 2018

I had long-term issues, too, that no one addressed. First, I had very low platelets (60-ish)...

https://connect.mayoclinic.org/comment/1473346/

Discussion: Recently diagnosed with MDS with anemia and would like to connect

Support Group: Blood Cancers & Disorders

Posted: Jan 3 7:15am

It took me several days, but finally found good questions for my PV and Myelofibrosis (9...

https://connect.mayoclinic.org/comment/802843/

Discussion: JAK2 negative with high platelets

Support Group: Heart & Blood Health

Posted: Jan 28, 2023

Hi doreen78, First off, no, I have not been told I am in remission from any...

https://connect.mayoclinic.org/comment/1292137/

Discussion: Has anyone told they went into remission without treatment?

Support Group: Blood Cancers & Disorders

Posted: Apr 28, 2025

Hello @momoffivetoo. I’m 77 now and was diagnosed with PV in 1/2020. It was discovered by...

https://connect.mayoclinic.org/comment/1277135/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 8, 2025

I have had serious abdominal pain since childhood, urticarias, cough problems, and other symptoms that match...

https://connect.mayoclinic.org/comment/134292/

Discussion: Mast Cell Activation

Support Group: Blood Cancers & Disorders

Posted: May 3, 2017

Last November, I fell backwards into my wheelchair & hit screws at L5S1. I went to...

https://connect.mayoclinic.org/comment/1394155/

Discussion: Symptoms of non Hodgkin's Lymphoma ?

Support Group: Blood Cancers & Disorders

Posted: Sep 15, 2025

Hi @rivermaya34. So sorry to hear you have been diagnosed with HNPP. This is such a...

https://connect.mayoclinic.org/comment/1070799/

Discussion: Chronic lymphocytic leukemia and Hereditary Nerve Pressure Palsey

Support Group: Blood Cancers & Disorders

Posted: May 19, 2024

Aloha! I am 73. diagnosed with ET JAK2 about 3 years ago. elevated plates to 707....

https://connect.mayoclinic.org/comment/1552304/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Apr 16 6:29pm

I was diagnosed in 2024. Started sprycel with almost no side effects. A little sun sensitivity...

https://connect.mayoclinic.org/comment/1562095/

Discussion: Does anyone have chronic myeloid leukemia (CML)?

Support Group: Blood Cancers & Disorders

Posted: Apr 28 7:22pm

@okiebon , i started treatment March 17 with just Darzalex and that afternoon I was diagnosed...

https://connect.mayoclinic.org/comment/1560267/

Discussion: DVRd quadruple therapy for myeloma: Nervous about side effects

Support Group: Blood Cancers & Disorders

Posted: Apr 26 4:42pm

Hello! How's everyone doing?? I'm so happy to have found this group as I've really been...

https://connect.mayoclinic.org/comment/720738/

Discussion: Livedoid vasculopathy

Support Group: Blood Cancers & Disorders

Posted: Jun 24, 2022

Hi @gonefishinmt, I'm new to this site & first must say how good it feels to...

https://connect.mayoclinic.org/comment/82973/

Discussion: Treatment options for Livedoid Vasculopathy (LV)

Support Group: Skin Health

Posted: Feb 4, 2016

I’m on HU since October 2021 for PV and currently taking 500 mg 4x week. Have...

https://connect.mayoclinic.org/comment/1001542/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 22, 2024

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