Blood Cancers & Disorders Support Group

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Comments (925)

Well, I think I fall into the high risk category, as I'm older than 60, have...

https://connect.mayoclinic.org/comment/782573/

Discussion: People living with ET and taking Hydrea: Anybody setting records?

Support Group: Blood Cancers & Disorders

Posted: Dec 8, 2022

@margrethe Wow your numbers aren’t that high so I will think positively that you wind up...

https://connect.mayoclinic.org/comment/873147/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2023

Hi, I have t seen anyone on this site mention a repeat JAK2 test. I think...

https://connect.mayoclinic.org/comment/900589/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jul 23, 2023

HI The only side affect I have had is tiredness, I avoid sitting in the sun...

https://connect.mayoclinic.org/comment/940309/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Oct 2, 2023

They can tell from your red and white cells, platelets and hematocrit . The name of...

https://connect.mayoclinic.org/comment/986546/

Discussion: Polycythemia diagnosis

Support Group: Blood Cancers & Disorders

Posted: Dec 26, 2023

Hi Lori, thanks for all your amazing support and information. My family is finding the articles...

https://connect.mayoclinic.org/comment/875908/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 10, 2023

Hi, Flynn. I too understand your hesitancy to take the Hydrea. I am 81. I have...

https://connect.mayoclinic.org/comment/773870/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: Nov 16, 2022

Hi I’m 62 male , was diagnosed 3 months ago with ET and JAK2 positive my...

https://connect.mayoclinic.org/comment/828785/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2023

Don't assume your will have side effects from Hydrea. My platelets were 600s for 10 years...

https://connect.mayoclinic.org/comment/846829/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2023

Erikaerika, I just looked at NIH.gov and as of 2020 the median survival age of people...

https://connect.mayoclinic.org/comment/799775/

Discussion: How did you make the final decision to begin HU protocol for ET?

Support Group: Blood Cancers & Disorders

Posted: Jan 21, 2023

really, no one wants plts with JAK2..and they rebuild so fast, it doesn't really help to...

https://connect.mayoclinic.org/comment/1047269/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Apr 8 8:42am

Hi, I was do with ET 3 years ago, + JAK2 via BM bx. I am...

https://connect.mayoclinic.org/comment/855293/

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

Support Group: Blood Cancers & Disorders

Posted: May 6, 2023

MJPM- Many thanks for your epistle and distinct definitions. I have suffered from ET for about...

https://connect.mayoclinic.org/comment/328599/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Mar 23, 2021

So glad to hear you are not having symptoms and it has not morphed into leukemia....

https://connect.mayoclinic.org/comment/203949/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2019

A year and a half ago, I presented a hemoglobin of 7g with no evidence of...

https://connect.mayoclinic.org/comment/915865/

Discussion: Iron deficiency anemia without an apparent cause

Support Group: Blood Cancers & Disorders

Posted: Aug 20, 2023

Hi @casevin7 JAK2 is an acquired mutation so it is possible to develop it in the...

https://connect.mayoclinic.org/comment/870437/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 1, 2023

Welcome to Connect, @eferret. Polycythemia vera is from a group of blood conditions called myeloproliferative neoplasms....

https://connect.mayoclinic.org/comment/1125122/

Discussion: How much of a risk factor is high white blood cell count with pv?

Support Group: Blood Cancers & Disorders

Posted: Aug 16 8:56pm

Hello, many people choose not to have the bone marrow test. PV can be diagnosed solely...

https://connect.mayoclinic.org/comment/1156731/

Discussion: After 3 months on hydroxyurea, I am going to ask to switch to Besremi

Support Group: Blood Cancers & Disorders

Posted: Oct 14 6:20am

Thanks for the question. If the diagnosis is clear without punching around in the marrow, the...

https://connect.mayoclinic.org/comment/593688/

Discussion: High platelet count: What does this mean?

Support Group: Blood Cancers & Disorders

Posted: Apr 12, 2021

A hematologist should follow IPSET guidelines for ET clot prevention: JAK2+ and over 60 = platelet...

https://connect.mayoclinic.org/comment/796537/

Discussion: High platelet count: What does this mean?

Support Group: Blood Cancers & Disorders

Posted: Jan 14, 2023