Blood Cancers & Disorders Support Group

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Comments (362)

I am 73 and am positive for Waldenstrom’s Macroglobulinemia, MYD88 positive, CXCR4 negative. In addition, I...

https://connect.mayoclinic.org/comment/1518410/

Discussion: Anyone diagnosed with both myelofibrosis and Waldenstroms lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Mar 3 8:55am

@janemc I’m not convinced by that argument, as Essential thrombocythemia (ET) is not contagious and cannot...

https://connect.mayoclinic.org/comment/1564791/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: May 2 10:43am

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 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

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

@1pearl would you mind sharing your doctors name at City of Hope? I’ve been considering going...

https://connect.mayoclinic.org/comment/1420257/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 21, 2025

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

Welcome to Connect, @patpambern. Having itchy skin seems to be pretty common with Polycythemia Vera. There...

https://connect.mayoclinic.org/comment/1036922/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2024

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, 2024

I have PV and experienced hair loss when taking Hydroxyurea 7 days a week but it...

https://connect.mayoclinic.org/comment/1211910/

Discussion: Hair loss with ET and on hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: Jan 15, 2025

Interesting, isn’t it? I never would have put together sleep apnea or lack of sleep together...

https://connect.mayoclinic.org/comment/781950/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Dec 7, 2022

New here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google...

https://connect.mayoclinic.org/comment/875474/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 9, 2023

Hi @favy2. It would be great for someone who needs therapeutic blood draws to be able...

https://connect.mayoclinic.org/comment/851324/

Discussion: Is it safe to have a tattoo if you have Polycythemia Vera?

Support Group: Blood Cancers & Disorders

Posted: Apr 29, 2023

Lynnevb, I have been taking jakafi for almost two years with no side effects.I was diagnosed...

https://connect.mayoclinic.org/comment/1003544/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 25, 2024

I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg...

https://connect.mayoclinic.org/comment/1270863/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Mar 31, 2025

Welcome to Connect @mahmoudbakry. Diagnosis blood conditions can get a little tricky. It’s often like trying...

https://connect.mayoclinic.org/comment/1022164/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Feb 25, 2024

Attended my first IWMF educational forum as a virtual attendee. Very helpful since I have been...

https://connect.mayoclinic.org/comment/1578963/

Discussion: Is it Waldenstrom Macroglobulinemia?

Support Group: Blood Cancers & Disorders

Posted: 2 hours ago

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