Anyone dealing MDS and how are you doing?

Posted by links @links, Apr 20 7:32am

Hello
Anyone dealing with MDS and how long and how are you doing?

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My brother brought me two cases of bottles. I will try those at room temp. At first room temp unsettled me, so my caregivers suggested cold. They drink cold. This water is a work in progress. One of my caregivers nagged about water. Funny how they want to help. One drinks black tea all day, the other thinks she drinks a lot of water. I would say sometimes we think we do. I so agree on humor. Thank you for the message,

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@kva111

I was diagnosed with MDS-IB2 on April 11, 2024. I signed a consent form to begin chemotherapy with INQOVI. My Dr. says this is preparation for stem cell transplant. I have not started chemotherapy yet. I have an appointment at LEVINE cancer center in Charlotte, NC on May 17, 2024. I am 76 years old. I feel perfectly normal. I have low WBC, RBC, and platelets. Right now I am trying to educate myself about my disease and treatment options.

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It's great that you are getting educated ahead of time - it helps you ask more pertinent questions. It can't hurt to get a 2nd opinion as well. My hematologist recommended that I do, and I was glad to have another set of eyes and another source of information. Is LEVINE a Center of Excellence? If not, I would recommend finding one near you and getting a 2nd opinion. God bless you in your journey!

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@rrivory

It's great that you are getting educated ahead of time - it helps you ask more pertinent questions. It can't hurt to get a 2nd opinion as well. My hematologist recommended that I do, and I was glad to have another set of eyes and another source of information. Is LEVINE a Center of Excellence? If not, I would recommend finding one near you and getting a 2nd opinion. God bless you in your journey!

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rrivory: Thank you for your comments. LEVINE is a center of excellence. I am going there for consultation and a second opinion.

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