Blood Cancers & Disorders Support Group

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Comments (543)

Hmm, I’ve had some rashes from the meds I was on and usually it’s just ‘grin...

https://connect.mayoclinic.org/comment/706333/

Discussion: Want to talk about Multiple Myeloma: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: May 7, 2022

My Fiance was recently diagnosed with Langerhans cell Histiocytosis. We are in search of a second...

https://connect.mayoclinic.org/comment/639606/

Discussion: Adult Langerhans cell Histiocytosis and CMML

Support Group: Blood Cancers & Disorders

Posted: Sep 27, 2021

After I was diagnosed with Cutaneous T Cell Lymphoma, Mycosis Fungoides in November 2022, my dermatologist...

https://connect.mayoclinic.org/comment/1098081/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Jul 2, 2024

Hi all! Brand new MGUS IgA here, with severe neuropathic foot itch (bottom balls of feet)...

https://connect.mayoclinic.org/comment/931576/

Discussion: Does anyone have neuropathy related to MGUS?

Support Group: Blood Cancers & Disorders

Posted: Sep 17, 2023

It took me several days, but finally found good questions for my PV and Myelofibrosis (9...

https://connect.mayoclinic.org/comment/802843/

Discussion: JAK2 negative with high platelets

Support Group: Heart & Blood Health

Posted: Jan 28, 2023

Hi doreen78, First off, no, I have not been told I am in remission from any...

https://connect.mayoclinic.org/comment/1292137/

Discussion: Has anyone told they went into remission without treatment?

Support Group: Blood Cancers & Disorders

Posted: Apr 28, 2025

Newly diagnosed with PV JAK2 mutation 12/12/25. Started hydrea that day and stopped 1/29/2026. My labs...

https://connect.mayoclinic.org/comment/1604627/

Discussion: Hydroxyurea: what side effects were so bad you had to stop taking it?

Support Group: Blood Cancers & Disorders

Posted: Jun 23 12:06pm

I've been on Jakafi since December 2022 and the only thing I experienced initially was an...

https://connect.mayoclinic.org/comment/908466/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 6, 2023

I took HU for 7 years. Never realized the side effects that were associated with that...

https://connect.mayoclinic.org/comment/1312590/

Discussion: Developed Rash on Hydroxyurea (HU)

Support Group: Blood Cancers & Disorders

Posted: May 25, 2025

Thank you, Judy! Having an idea of what symptoms to look for is actually comforting. I...

https://connect.mayoclinic.org/comment/744249/

Discussion: Tasigna side effect? How do I stop an itchy scalp and rash?

Support Group: Blood Cancers & Disorders

Posted: Sep 1, 2022

Bruises on the forearms are very common as we age. They can be quite large, dark...

https://connect.mayoclinic.org/comment/1152706/

Discussion: Bruising unexplained

Support Group: Blood Cancers & Disorders

Posted: Oct 6, 2024

Aloha MLMK, I too was quite freaked out when I read what HD addresses … CANCER?!!...

https://connect.mayoclinic.org/comment/1035185/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 17, 2024

Hello @momoffivetoo. I’m 77 now and was diagnosed with PV in 1/2020. It was discovered by...

https://connect.mayoclinic.org/comment/1277135/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 8, 2025

I was diagnosed with LCH at Mayo Clinic in 2016. I have skin only. After several...

https://connect.mayoclinic.org/comment/641408/

Discussion: Adult Langerhans cell Histiocytosis and CMML

Support Group: Blood Cancers & Disorders

Posted: Oct 2, 2021

My doctor said is was probably caused by a chemical. When I mentioned I had been...

https://connect.mayoclinic.org/comment/1522514/

Discussion: Myelodysplastic syndromes and stomach problem?

Support Group: Blood Cancers & Disorders

Posted: Mar 8 1:23pm

Finally someone that understands my plight. Yes, this disease is a nightmare and when I have...

https://connect.mayoclinic.org/comment/134330/

Discussion: Mast Cell Activation

Support Group: Blood Cancers & Disorders

Posted: Aug 11, 2018

I was diagnosed with CML almost 2 yrs ago. I did the hydroxyurea to start and...

https://connect.mayoclinic.org/comment/1425562/

Discussion: Is anyone taking Danziten (nilotinib) for CML?

Support Group: Blood Cancers & Disorders

Posted: Oct 28, 2025

Hello, in April I took levofloxacin due to an infection and have ended up with neuropathy...

https://connect.mayoclinic.org/comment/1621497/

Discussion: Mast Cell Activation

Support Group: Blood Cancers & Disorders

Posted: Jul 15 7:05pm

Oh Lori. I am so happy you Know the treatments I am talking about. I know...

https://connect.mayoclinic.org/comment/1347488/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Jul 13, 2025

I have had serious abdominal pain since childhood, urticarias, cough problems, and other symptoms that match...

https://connect.mayoclinic.org/comment/134292/

Discussion: Mast Cell Activation

Support Group: Blood Cancers & Disorders

Posted: May 3, 2017

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