Blood Cancers & Disorders Support Group

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Comments (259)

Hemo oncologists in the US have differing opinions about what ET is and how to treat...

https://connect.mayoclinic.org/comment/1279971/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Apr 12, 2025

I'm thinking about the response above of @loribmt, and wanted to pipe in that the interferon...

https://connect.mayoclinic.org/comment/812976/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Feb 17, 2023

Hello @akeytoo, I don’t think anyone is fond of chemo treatments but they can be absolutely...

https://connect.mayoclinic.org/comment/911908/

Discussion: BESREMi anyone?

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2023

Hi @ladyplumber7 Certainly as a patient you have a right to decide against any treatments or...

https://connect.mayoclinic.org/comment/1642443/

Discussion: Bone marrow biopsy

Support Group: Blood Cancers & Disorders

Posted: 3 days ago

Hi All — I’m new here. I was diagnosed with PV in Nov ‘22 (I was...

https://connect.mayoclinic.org/comment/892975/

Discussion: Polycythemia Vera (PV) and fatigue: What helps?

Support Group: Blood Cancers & Disorders

Posted: Jul 9, 2023

Welcome to Connect, @shellep16 As fellow member @eloise999 mentioned, an allogenic SCT (using donor cells) would...

https://connect.mayoclinic.org/comment/1324156/

Discussion: Stem Cell Replacement

Support Group: Blood Cancers & Disorders

Posted: Jun 10, 2025

OK, a question about Medicare choice and chemo drugs for ET and MPNs! My Medicare advisor/broker...

https://connect.mayoclinic.org/comment/778360/

Discussion: Medicare question: Traditional or Advantage approach better for MPNers

Support Group: Blood Cancers & Disorders

Posted: Nov 28, 2022

Not sure what study you looked at. Of course there can be side effects with HU....

https://connect.mayoclinic.org/comment/1297070/

Discussion: What’s the cost of Pegasys with good commercial insurance?

Support Group: Blood Cancers & Disorders

Posted: May 5, 2025

I haven't watched it, but all those thoughts flit through my mind, for sure. I, who...

https://connect.mayoclinic.org/comment/1236773/

Discussion: Blame, guilt, false hope: Anyone watch "Apple Cider Vinegar"

Support Group: Blood Cancers & Disorders

Posted: Feb 14, 2025

Joni, do look into financial aide from the interferon producer itself. I could not justify the...

https://connect.mayoclinic.org/comment/948018/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 15, 2023

Hi @chocolategirl Gosh. That sounds awful and quite scary. I'm sorry you had to experience that....

https://connect.mayoclinic.org/comment/1523690/

Discussion: Anyone have ET and on Pegasys instead of Hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Mar 10 7:16am

@garyr443 Ahem, if you read carefully, you'll see that my comment was directed at newly diagnosed...

https://connect.mayoclinic.org/comment/1604487/

Discussion: Is anyone involved in clinical trials for ET, specifically for CALR?

Support Group: Blood Cancers & Disorders

Posted: Jun 23 9:45am

I was on Anagrelide for a while as well. I starting on HU in 1992 and...

https://connect.mayoclinic.org/comment/1325199/

Discussion: Essential Thrombocythemia treatment with Besremi

Support Group: Blood Cancers & Disorders

Posted: Jun 11, 2025

@kat260 thank you so much for your precise description of your appointment with this fabulous specialist....

https://connect.mayoclinic.org/comment/1583463/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: May 26 7:26am

Hi @treeore! Thanks for the update and I’m glad to see your liver enzymes have returned...

https://connect.mayoclinic.org/comment/911896/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2023

My doctors continue to tell me that they are not sure that my decades of visual...

https://connect.mayoclinic.org/comment/832341/

Discussion: How does ET affect one’s vision?

Support Group: Blood Cancers & Disorders

Posted: Mar 26, 2023

Update! I started on Besremi in 2023, being injected in the clinic. I'm on Medicare Traditional...

https://connect.mayoclinic.org/comment/1010062/

Discussion: New to Pegasys for ET - advice please!

Support Group: Blood Cancers & Disorders

Posted: Feb 5, 2024

Yes! I have just been diagnosed with Pulmonary Arterial Hypertension, and I am guessing that its...

https://connect.mayoclinic.org/comment/1452446/

Discussion: JAK2 positive, high platelets and also PAH (diagnosed)

Support Group: Blood Cancers & Disorders

Posted: Dec 3, 2025

@swalex Just browsing your Web site: There is research underway to see if anti-inflammatory diet might...

https://connect.mayoclinic.org/comment/1525864/

Discussion: Newly Diagnosed Essential Thrombocytosis

Support Group: Blood Cancers & Disorders

Posted: Mar 13 9:32am

Hi @sckf Unfortunately, leg ulcers can be a potential side effect from HU for some longer...

https://connect.mayoclinic.org/comment/1592886/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Jun 7 2:06pm

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