Blood Cancers & Disorders Support Group

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Comments (525)

@carolgk Thank you, Carol. I'm doing much better with the Jakafi medication because my MF is...

https://connect.mayoclinic.org/comment/1538801/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 30 12:31pm

Thank you for sharing this info I too have PV and am on hydroxy and blood...

https://connect.mayoclinic.org/comment/1086170/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2024

@loribmt Having been on imatinib for 16 years, multiple oncologists have suggested not to change anything...

https://connect.mayoclinic.org/comment/1552726/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 17 10:20am

Hi. I have ET and I have been taking Hydroxyuria for almost two years. It is...

https://connect.mayoclinic.org/comment/805626/

Discussion: Essential Thrombocythemia (ET) and viruses

Support Group: Blood Cancers & Disorders

Posted: Feb 2, 2023

@swhitman410 It is really nice that you are trying to help your Mom deal with her...

https://connect.mayoclinic.org/comment/744189/

Discussion: Hemochromatosis: How do you deal with extreme itchiness?

Support Group: Skin Health

Posted: Sep 1, 2022

Welcome to Connect, @kkrok. Thank you for sharing your mom’s story with us. You’re very compassionate...

https://connect.mayoclinic.org/comment/1361981/

Discussion: Cutaneous T-cell lymphoma consistent with mycosis fungoides

Support Group: Blood Cancers & Disorders

Posted: Aug 2, 2025

I have Polycythemia Vera with Jak2 an 76 years old and diagnosed 3 yrs ago. My...

https://connect.mayoclinic.org/comment/1222785/

Discussion: Polycythemia Vera and low iron

Support Group: Blood Cancers & Disorders

Posted: Jan 27, 2025

Hello @niki101 I did encounter a bout of itching after treatment, (Non Hodgkin's) I was taking...

https://connect.mayoclinic.org/comment/312757/

Discussion: Hodgkin's lymphoma and itching and other side effects

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2020

OMG! Yes, that is exactly what the oncologist said. "CLL won't kill you something else will."...

https://connect.mayoclinic.org/comment/996585/

Discussion: Chronic Lymphocytic Leukaemia: New symptom of burning sensation

Support Group: Blood Cancers & Disorders

Posted: Jan 13, 2024

Hi @lithuanian, I would like to invite a few members who have talked about a myelodysplastic...

https://connect.mayoclinic.org/comment/240720/

Discussion: Myelodysplastic syndrome (MDS) and skin itching

Support Group: Blood Cancers & Disorders

Posted: Jan 30, 2019

Hi Arti4, I was experiencing allot of bad itching before my Et/Jak2 diagnosis and my dermatologist...

https://connect.mayoclinic.org/comment/874288/

Discussion: MGUS and restless leg syndrome

Support Group: Blood Cancers & Disorders

Posted: Jun 7, 2023

Always check with your own oncologist, because we are all different. Speaking for myself: Generic Claritin...

https://connect.mayoclinic.org/comment/1389367/

Discussion: Does your oncologist acknowledge that ET may cause bone pain?

Support Group: Blood Cancers & Disorders

Posted: Sep 8, 2025

Good morning all.....to anyone having a rash and scalp itchiness I have Essential Thrombocytosis which causes...

https://connect.mayoclinic.org/comment/744043/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 1, 2022

Good Morning, When I had breast cancer the doctor told me to use Aquaphor and it...

https://connect.mayoclinic.org/comment/1298858/

Discussion: Myelodysplastic syndrome (MDS) and skin itching

Support Group: Blood Cancers & Disorders

Posted: May 7, 2025

Welcome to Connect, @isabellereine. You’re not crazy but you certainly are complicated! ☺️ For being only...

https://connect.mayoclinic.org/comment/1197279/

Discussion: Are the symptoms in my head? Polycythemia Vera + Mastocytosis (age-23)

Support Group: Blood Cancers & Disorders

Posted: Dec 26, 2024

The tipping point for me to try Jackifi would be if/when my hematologist decides my platelet...

https://connect.mayoclinic.org/comment/764327/

Discussion: Essential Thrombocytosis - what's your experience with Jakifi?

Support Group: Blood Cancers & Disorders

Posted: Oct 22, 2022

Hi @markgventnor, it’s not unusual for people to experience itching when they have a blood cancer...

https://connect.mayoclinic.org/comment/992982/

Discussion: What should doctor look for when testing my blood to be CMML donor?

Support Group: Blood Cancers & Disorders

Posted: Jan 7, 2024

@ina2022 No rash, but a lot of burning, itching in lower legs and feet, esp at...

https://connect.mayoclinic.org/comment/1516963/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Mar 1 7:34am

I can only share my experiences with rashes, and tormenting itching. My cause is unknown, but...

https://connect.mayoclinic.org/comment/744319/

Discussion: Hemochromatosis: How do you deal with extreme itchiness?

Support Group: Skin Health

Posted: Sep 1, 2022

I have been doing very well with Procrit shots every 4-5 months, in a series of...

https://connect.mayoclinic.org/comment/226233/

Discussion: Myelodysplastic Syndrome (MDS): how to increase red blood cells?

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2019

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