Blood Cancers & Disorders Support Group

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Comments (2,268)

Thanks for the link to this interesting study, pegrid. It found that while Vitamin D deficiency...

https://connect.mayoclinic.org/comment/1522299/

Discussion: What is known about vitamin D and MPN?

Support Group: Blood Cancers & Disorders

Posted: Mar 8 9:17am

Just a heads up ?maybe? I got my second shingrix shot and a week later had...

https://connect.mayoclinic.org/comment/823979/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 10, 2023

I never heard no hormones. My Hematologist said HRT was fine. Just no progesterone. I, too,...

https://connect.mayoclinic.org/comment/808677/

Discussion: Essential Thrombocythemia (ET) and viruses

Support Group: Blood Cancers & Disorders

Posted: Feb 9, 2023

Hi, I have high platelets as well due to ET. What blood thinners are you on...

https://connect.mayoclinic.org/comment/298983/

Discussion: High WBC and platelet count

Support Group: Blood Cancers & Disorders

Posted: May 20, 2020

Hi - I am new to this group and new to being diagnosis with ET (Platelets)...

https://connect.mayoclinic.org/comment/972281/

Discussion: How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Support Group: Blood Cancers & Disorders

Posted: Nov 29, 2023

Could you ask your doctor to test you for MPL or CALR mutations that would indicate...

https://connect.mayoclinic.org/comment/893833/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jul 11, 2023

I was diagnosed with ET in February of this year. I did have a bone marrow...

https://connect.mayoclinic.org/comment/1089050/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 18, 2024

Thank you for sharing your history. I will keep you experience with ET and HU in...

https://connect.mayoclinic.org/comment/892165/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jul 8, 2023

I'm really interested in a list as well. Pomegranates or the juice is supposed to lower...

https://connect.mayoclinic.org/comment/1545681/

Discussion: Is it okay to take B12 with essential thrombocythemia (ET)?

Support Group: Blood Cancers & Disorders

Posted: Apr 8 11:18am

I was diagnosed with ET when I was 50. My platelet level was successfully controlled with...

https://connect.mayoclinic.org/comment/1327870/

Discussion: Stem Cell Replacement

Support Group: Blood Cancers & Disorders

Posted: Jun 15, 2025

Thanks so much for your reply. This is very helpful and I will have my GP...

https://connect.mayoclinic.org/comment/1135957/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Sep 4, 2024

I also experience being tired and lightheaded, as well as tingly lips and tongue on occasion....

https://connect.mayoclinic.org/comment/1126994/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Aug 19, 2024

I was diagnosed with ET in 2019. I have only been taking an aspirin a day....

https://connect.mayoclinic.org/comment/1523256/

Discussion: ET management, Is anyone here taking Jakafi or Pegasus?

Support Group: Blood Cancers & Disorders

Posted: Mar 9 12:20pm

There is a nice ET support group on Facebook, that I found 3 years ago, with...

https://connect.mayoclinic.org/comment/797536/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jan 16, 2023

When I first saw my heme doc little over a year ago, he said not to...

https://connect.mayoclinic.org/comment/1039829/

Discussion: Im 64 and my blood platelets have been in the low 530-550 range for yr

Support Group: Blood Cancers & Disorders

Posted: Mar 25, 2024

I have read the risks for AML with ET. It is low, but can happen. One...

https://connect.mayoclinic.org/comment/1022379/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 25, 2024

That was my pattern, too. Extreme fatigue, then improvement after I started HU. I think age...

https://connect.mayoclinic.org/comment/1221934/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 26, 2025

https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27 This is the very best site I have found to explain ET and PV. It...

https://connect.mayoclinic.org/comment/955352/

Discussion: Needing help understanding ET and how it affects my life

Support Group: Blood Cancers & Disorders

Posted: Oct 28, 2023

Hi, the Facebook group may be a good place to post because it has a lot...

https://connect.mayoclinic.org/comment/761692/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 15, 2022

Welcome @betherelynda and @arti4. I moved your recent posts about essential thrombocythemia and hydroxyurea to this...

https://connect.mayoclinic.org/comment/729870/

Discussion: How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Support Group: Blood Cancers & Disorders

Posted: Jul 23, 2022