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CLL treatment that concentrates in shrinking the spleen without undergoing chemo

Blood Cancers & Disorders | Last Active: Mar 5, 2023 | Replies (38)
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@colleenyoung

Hi @bjsdancer,
I'm tagging @rcand10s who wrote about being diagnosed with Primary Myelofibrosis in 2013. I'm hoping Richard will return to share with you.

In the meantime, you may wish to read about the condition on NORD (National Organization of Rare Diseases) which was prepared with leading expert Ayalew Tefferi, MD, Division of Hematology, Mayo Clinic. You can watch it this video by Mayo Clinic hematologist Dr. Ruben Mesa the latest research and treatments: http://youtu.be/OEhRn2e-7c4 @rcand10s.

I'll keep looking for other members to Connect you with BJ's Dancer. Are you and your husband dancers?

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Replies to "Hi @bjsdancer, I'm tagging @rcand10s who wrote about being diagnosed with Primary Myelofibrosis in 2013. I'm..."
jzier | @jzier | May 22, 2016

I have CMML. I was diagnosed 5 years ago. <br>I did four years of IV chemo - Dacogen. Then did 6 months of trial study drug Tosedostat. I had negative reactions to Tosedostat and was taken off the study in February 2016. <br>Currently not doing any treatment. Blood transfusions every 2 weeks for low hemoglobin. <br>I would like to find out what studies - if any - are available at Mayo. I am also wondering if there are any immunotherapy studies that may help with this illness. <br>Thx for your help. <br><br>

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bjsdancer | @bjsdancer | May 28, 2016

Thanks Coleen for your input. My husband's disease is not considered leukemia but a disease of the bone marrow. Enlarged spleen, weight loss and fatigue. He has been on Tamsulosin for six weeks for his myeloid myelofibrosis but no reduction is spleen size. Possible addition of ruxolitnib but cost is out of sight. Clinical trials or financial aid a possibility. Yes I am a dancer, singer, actress but years ago. My husband and I were very active in musical theater, thanks for asking.

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