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MDS / MPN RS-T

This topic has 5 replies, 2 voices, and was last updated 2 years, 4 months ago by marilyn.

Viewing 6 posts - 1 through 6 (of 6 total)

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April 25, 2019 at 6:41 pm #46585

Jimmy Greenhut
Participant

Hi I was wondering if anyone has this type? Was diagnosed last yr,watch & wait. Last week I had my results, every 4mos. My Dr is suggesting Luspatercept instead of EPO shots & transfusion.

My #’s
WBC 6.3
RBC 2.42
HEMOGLOBIN 9.2
MCV 115
MCH 38
Platelets 394
Ferritin 660

Also on occasion when lying down swishing in ears & last couple months both legs ache after short walks.

Thanks in advance, Jimmy

August 22, 2019 at 11:36 pm #48730

Ann Jones
Participant

Where do you live? Didn’t know Luspatercept was available ? Congratulations. I’ve understood it’s a lifesaver.

August 23, 2019 at 7:06 am #48732

Jimmy Greenhut
Participant

Ann,still doing Procrit once a week now 40k units. I’m sorry Luspatercept isn’t yet :(. The FDA has fast tracked it. My Hemo says maybe early 2020. I’m in Fl. My hemoglobin is 9 for the last month. Was bi-weekly now every week. It was to late for me to enroll for the study, as I was already on Procrit. I apologize that I didn’t make that more clear.

November 13, 2021 at 8:33 pm #56711

marilyn
Participant

Hi Jimmy, You are the 1st person I have met with the same diagnosis. I was diagnosed at Huntsman Cancer in Salt Lake City in 2018 when I had a BMB showing mutations of Jak2v617f, sb3b1, and tet2. I also have MGUS. I have since moved to a city in central Oregon and am seeing a hematologist/oncologist here who does not really seem familiar with my diagnosis. I went for a 2nd opinion @ OHSU in Portland (3 1/2 hrs away) who is recommending a 2nd BMB to be done there in the spring. My only symptoms so far are shortness of breath, fatigue, and recently a loss of appetite. I have been on Hydoxyurea since my initial diagnosis that keeps my platelet count normal (it was initially 680) with no side effects to speak of. My most recent blood counts were RBC 3.44 WBC 7.0 platelets 296 MCV 104 MCH36 and low free light chain ratio of .08, lambda 20. I am still in active surveillance mode.
Marilyn

November 14, 2021 at 3:02 pm #56718

Jimmy Greenhut
Participant

Hi Marilyn, come join a private FB group. You’re not alone. Not that many have our branch of MDS. It’s a great group, like family. MDS/MPN-RS-T RARS-T 2020. Only 50 are in the group. email me if you need to chat jnhut@aol.com

Take care, Jimmy

November 29, 2021 at 5:50 pm #56837

Jimmy Greenhut
Participant

Hi,read below. Looking forward to hearing from you. JG
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