Blood Cancers & Disorders Support Group

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Comments (337)

I, too, am interested in what feedback others have. My platelets are in the 500s and...

https://connect.mayoclinic.org/comment/941103/

Discussion: Worried about slightly elevated platelet count

Support Group: Blood Cancers & Disorders

Posted: Oct 3, 2023

Further research into my hematocrit problem revealed that if you have polycythemia vera long enough it...

https://connect.mayoclinic.org/comment/843456/

Discussion: Hematocrit Continues to Drop After Stopping Hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: Apr 15, 2023

Weclome @lwengel, as you likely already know, the most common treatment for polychythemia vera (PV) is...

https://connect.mayoclinic.org/comment/738023/

Discussion: When is hydroxurea usually added to treat polycythemia vera (PV)?

Support Group: Blood Cancers & Disorders

Posted: Aug 16, 2022

I have had MGUS, then smouldering myeloma since 2013 with very small increases. 2 years ago...

https://connect.mayoclinic.org/comment/746666/

Discussion: MGUS with Polycythemia Vera (PV)

Support Group: Blood Cancers & Disorders

Posted: Sep 7, 2022

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

Welcome to Connect, @trarenrut. Typically, phlebotomies are done with patients who have polycythemia vera (PV) and...

https://connect.mayoclinic.org/comment/1313908/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: May 27, 2025

What was your Iron before the infusion? Mine has been between 4 and 6. And I...

https://connect.mayoclinic.org/comment/999945/

Discussion: Polycythemia and lack of iron

Support Group: Blood Cancers & Disorders

Posted: Jan 19, 2024

Hi Keith, I moved your message to this existing discussion: - BESREMi anyone? https://connect.mayoclinic.org/discussion/besremi-anyone/ I did...

https://connect.mayoclinic.org/comment/911723/

Discussion: BESREMi anyone?

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2023

Hi @cindyem I just read another comment you posted about having PV and anemia. From information...

https://connect.mayoclinic.org/comment/884148/

Discussion: Does anyone have information on PV with a low hemoglobin/ red count

Support Group: Blood Cancers & Disorders

Posted: Jun 24, 2023

Hi @lwengel, this sounds like a really good question to ask your doctors. Sometimes you have...

https://connect.mayoclinic.org/comment/770258/

Discussion: PV and atrial fibrillation

Support Group: Blood Cancers & Disorders

Posted: Nov 7, 2022

I originally had a platelet count of 555 that started my journey. I was diagnosed with...

https://connect.mayoclinic.org/comment/780489/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Dec 3, 2022

Hi @pennyhedgecoth, I'm tagging @stevehurlburt on this reply since I think your question about genetic testing...

https://connect.mayoclinic.org/comment/591406/

Discussion: JAK2 ASXL1 Mutations: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2021

@1pearl Hello friends! Thank you for your posts ! I am battling rare MPN CALLED MYELOFIBROSIS!!...

https://connect.mayoclinic.org/comment/1433127/

Discussion: Asked chatGPT about how long to be on treatment for Multiple Myeloma

Support Group: Blood Cancers & Disorders

Posted: Nov 7, 2025

Hi all. In December, I was diagnosed with a JAK2 mutation. Finally had my appointment with...

https://connect.mayoclinic.org/comment/231778/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 11, 2019

Wow That’s a bit crazy especially being that that particular blood test is very expensive! Mine...

https://connect.mayoclinic.org/comment/1058604/

Discussion: JAK2 detection accuracy

Support Group: Blood Cancers & Disorders

Posted: Apr 28, 2024

Hi @chella65 I found a relevant discussion for you with other members who have PV and...

https://connect.mayoclinic.org/comment/881483/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 19, 2023

Hi @saucy, In this case PV is Polycythemia Vera. It’s A type of blood cancer where...

https://connect.mayoclinic.org/comment/818232/

Discussion: PV Itching Not After Bathing

Support Group: Blood Cancers & Disorders

Posted: Feb 27, 2023

I have seen my family doctor who sent me for more bloodwork. I seen a specialist...

https://connect.mayoclinic.org/comment/780564/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Dec 3, 2022

I have been on HU for about five years. 500mg 4x week for Polycythemia Vera. I...

https://connect.mayoclinic.org/comment/1307330/

Discussion: Developed Rash on Hydroxyurea (HU)

Support Group: Blood Cancers & Disorders

Posted: May 18, 2025

There's a lot to take in! Our blood has four main components: White blood cells, red...

https://connect.mayoclinic.org/comment/1211059/

Discussion: Starting 17th year with ET. What's ahead?

Support Group: Blood Cancers & Disorders

Posted: Jan 14, 2025