Blood Cancers & Disorders Support Group

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Comments (525)

Hi Jacklyn, my husband was first diagnosed with MDS last Oct and recently progressed to AML....

https://connect.mayoclinic.org/comment/1337905/

Discussion: AML, age 78, taking Decetabine/ Venetoclax, no transplant

Support Group: Blood Cancers & Disorders

Posted: Jun 29, 2025

I have CMML/MF and have been dealing with itching for ten years. Jakafi works to some...

https://connect.mayoclinic.org/comment/1431290/

Discussion: MDS-CMML-1: Anyone dealing with pruritus (itching)?

Support Group: Blood Cancers & Disorders

Posted: Nov 5, 2025

I have been taking 600mgs of HU(Droxia formulation) since PMF diagnosis in 2018. It has lowered...

https://connect.mayoclinic.org/comment/1087439/

Discussion: Is my treatment a bit aggressive?

Support Group: Blood Cancers & Disorders

Posted: Jun 15, 2024

Welcome to Connect, @wesm. Polycythemia Vera is a condition where your body is producing too many...

https://connect.mayoclinic.org/comment/1094588/

Discussion: I was diagnosed with Polycythemia vera last Sept. Is pain normal?

Support Group: Blood Cancers & Disorders

Posted: Jun 26, 2024

Hello, new to these posts, groups and all of this information. I have had atopic dermatitis...

https://connect.mayoclinic.org/comment/161948/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Sep 9, 2019

I was diagnosed with IgA MGUS WHEN I WAS 52. I’m now 61. The typical age...

https://connect.mayoclinic.org/comment/1248366/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Mar 1, 2025

I’m at a loss after being told by my dermatologist she believes I have PV. I...

https://connect.mayoclinic.org/comment/1255864/

Discussion: Polycythemia Vera and Nutritional Ketosis

Support Group: Blood Cancers & Disorders

Posted: Mar 11, 2025

Hello @mvoge. Oh my goodness, intense itching is the worst! I had that with some of...

https://connect.mayoclinic.org/comment/882044/

Discussion: Others out there with CEL (Chronic Eosinophilic Leukemia)?

Support Group: Blood Cancers & Disorders

Posted: Jun 20, 2023

I take HU, 500 mg, 4x week, baby aspirin 2x day, and iron supplements 1x day....

https://connect.mayoclinic.org/comment/1210555/

Discussion: Does ET or HU affect liver functions?

Support Group: Blood Cancers & Disorders

Posted: Jan 13, 2025

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

Yes, age or ET is one of my constant questions. I'm 70 now. Just based on...

https://connect.mayoclinic.org/comment/1052910/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 18, 2024

On Sat, Dec 14, 2024 at 7:34 AM Mayo Clinic Connect < nf+9223a906+28451071@n1.hubapplication.com> wrote: > ##...

https://connect.mayoclinic.org/comment/1190261/

Discussion: Myelodysplastic syndrome (MDS) and skin itching

Support Group: Blood Cancers & Disorders

Posted: Dec 14, 2024

lexsjk, I am so sorry for what you have been through. ET is so rare that...

https://connect.mayoclinic.org/comment/1528764/

Discussion: ET: untreated elevated platelets for over 13 years

Support Group: Blood Cancers & Disorders

Posted: Mar 17 7:13am

Been searching for over 2 years, one hematologist oncologist has diagnosed PV. 1 test for jak-2...

https://connect.mayoclinic.org/comment/872618/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2023

Hi @nathangolden. I'm sorry to hear about your bone pain. While I don't have bone pain...

https://connect.mayoclinic.org/comment/875257/

Discussion: MGUS with bone pain?

Support Group: Blood Cancers & Disorders

Posted: Jun 9, 2023

One of the things I have noticed is that my doctors all seem to have different...

https://connect.mayoclinic.org/comment/919942/

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

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

Posted: Aug 27, 2023

Welcome to Connect, @chella65. As you can see you’re not alone with your new diagnosis of...

https://connect.mayoclinic.org/comment/879767/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 16, 2023

Angie, I'm 66, diagnosed with IgA Kappa MGUS 2/15/23, husband died of Multiple Myeloma 7/24/22. Mine...

https://connect.mayoclinic.org/comment/1053450/

Discussion: MGUS Symptoms: What symptoms did you experience?

Support Group: Blood Cancers & Disorders

Posted: Apr 19, 2024

Thank you so very much! I haven’t actually donated blood yet. It was thrown out as...

https://connect.mayoclinic.org/comment/1277461/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 8, 2025

I'm CALR, too. Been on HU for 6 years and bloodwork very stable in 400s once...

https://connect.mayoclinic.org/comment/1089100/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 18, 2024

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