Blood Cancers & Disorders Support Group

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Comments (2,270)

@sarahgault Hi, I have ET and Jak2 and take 1000mg HU Monday Wednesday and Friday and...

https://connect.mayoclinic.org/comment/1555364/

Discussion: Side effects of hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: Apr 20 1:12pm

Hello All, Here is a wonderful booklet for you to read. It may look too complicated...

https://connect.mayoclinic.org/comment/1048088/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2024

I know it’s a lot thrown at you right away…I’ve been in your shoes (not ET,...

https://connect.mayoclinic.org/comment/820614/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2023

My hematocrit is what we watch. When ever it gets to 21or 22 I’ll get a...

https://connect.mayoclinic.org/comment/801989/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jan 26, 2023

Hi @tamara, I want to add my welcome along with @pmm. I’m so glad you found...

https://connect.mayoclinic.org/comment/1152492/

Discussion: What was your experience with bone marrow biopsy?

Support Group: Blood Cancers & Disorders

Posted: Oct 5, 2024

I am 65 years old and I have been put on 500mg Hydroxyurea in the past...

https://connect.mayoclinic.org/comment/1081578/

Discussion: How fast do you start to feel hydroxyurea symptoms?

Support Group: Blood Cancers & Disorders

Posted: Jun 6, 2024

First of all, you may want to consider a hematologist/oncologist for help with this. I'm a...

https://connect.mayoclinic.org/comment/1528825/

Discussion: ET: untreated elevated platelets for over 13 years

Support Group: Blood Cancers & Disorders

Posted: Mar 17 8:21am

I have had ET for 10 years and avoided a bone marrow biopsy completely. The fact...

https://connect.mayoclinic.org/comment/1088943/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 18, 2024

Hi Ingrid077, I hope you get definite answers soon. I was diagnosed in June 2022 with...

https://connect.mayoclinic.org/comment/792008/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Jan 3, 2023

Hi, @colran, Essential Thrombocythemia is a condition where your body is producing too many platelets. It’s...

https://connect.mayoclinic.org/comment/1523842/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 10 9:57am

I've been low energy most of my life. I don't know if ET or HU really...

https://connect.mayoclinic.org/comment/946483/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 12, 2023

Thanks! Today *is* a better day. I got a decent night's sleep. I've had ET for...

https://connect.mayoclinic.org/comment/782105/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 7, 2022

I read that bone marrow transplants are Only for the MPN myelofibrosis I have not heard...

https://connect.mayoclinic.org/comment/57941/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Jun 21, 2020

@writernana Hi, I'm 64 and have ET with Jak2 and had alot of joint pain and...

https://connect.mayoclinic.org/comment/1541307/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Apr 2 2:24pm

@ina2022 My hematologist told me I had a high platelets count (675) in Nov 2024 with...

https://connect.mayoclinic.org/comment/1558250/

Discussion: Side effects of hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: 3 days ago

Wondering if there is anyone that has had problems with Bursitis like hip and leg pain,...

https://connect.mayoclinic.org/comment/146306/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 15, 2020

I have JAK2+ ET and I've never had side effects from Hydrea in the 30 years...

https://connect.mayoclinic.org/comment/194375/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 4, 2021

@lynnevb do you have ET or have you progresssed to PV? Why does your doctor say...

https://connect.mayoclinic.org/comment/1422446/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Oct 24, 2025

Glad you were able to get approval for Besremi. Please let us know how you're doing...

https://connect.mayoclinic.org/comment/1224459/

Discussion: Essential Thrombocythemia treatment with Besremi

Support Group: Blood Cancers & Disorders

Posted: Jan 29, 2025

Hi Lynn, welcome. Both @nohrt4me @huronshores have ET and have had joint replacement therapies. They may...

https://connect.mayoclinic.org/comment/851903/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2023