Living with Low-Grade MDS: Seeking Advice and Support

Communities›Myelodysplastic Syndromes›Living with Low-Grade MDS: Seeking Advice and Support

JC

Community Member

4 months ago

Was diagnosed approximately a year ago with low-grade MDS. Been seeing a hematologist for a year now getting regular lab work done. WBC counts are still low when I find myself taking naps 3 to 4 days a week. Not currently taking any medication. Sort of feels like I’m a ticking time bomb scary time for sure. Appreciate any thoughts on the matter.

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Accepted Answer

Living with a low-grade MDS diagnosis can feel overwhelming, especially when managing fatigue and uncertainty about the future. Many people in this community understand the emotional weight of regular monitoring and the challenges that come with blood count fluctuations. Consider discussing your fatigue patterns and any concerns about your current watch-and-wait approach with your hematologist, as they can provide guidance specific to your situation and help address some of the anxiety around your diagnosis.

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JS

Community Member

4 months ago

Hi. I'm sure your doctor is keeping things in check but stay on it. I was diagnosed with high grade 2 months ago. Fatigue is definitely there because of my low red blood cell count. I have my blood checked every 2 weeks. I'm staying positive for my girls and for myself. Keep checking and pushing your doctors. ❤️‍🩹

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JC

Community Member

4 months ago

Thank you for responding. Blessings to you and your family. Jim

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KT

Community Member

4 months ago

Same thing here

KT

Community Member

3 months ago

Me too

KT

Community Member

3 months ago

My dr. Hasn’t started anything for my MDS yet either. I feel the same way a ticking time bomb! Taking naps every day.

FH

Community Member

3 months ago

I was diagnosed 4 years ago I had 47 transfusions and been through 35 rounds of chemo and still. Bone marrow transplant was denied because liver failure. I’m always positive and you should be too. God bless you and your family

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CA

Community Member

2 months ago

Living with a low-grade MDS diagnosis can feel overwhelming, especially when managing fatigue and uncertainty about the future. Many people in this community understand the emotional weight of regular monitoring and the challenges that come with blood count fluctuations. Consider discussing your fatigue patterns and any concerns about your current watch-and-wait approach with your hematologist, as they can provide guidance specific to your situation and help address some of the anxiety around your diagnosis.

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JC

Community Member

13 days ago

My MDS has escalated to high grade now. Being treated at Moffitt. Just finished first round Inqovi. Intense chemo. Tanked all my counts. Had transfusion for HGP and Plt yesterday. Also on clinical trial drug. Approved for transplant waiting for donor. God bless to all of you.

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JS

Community Member

13 days ago

Moffitt is very good. I'm at Fred Hutch on the other coast. Doing a clinical chemo trial to get the blast cells in check and then should be able to do transplant. I have a donor but hopefully they are flexible on timing! 🙏🙏🙏 Stay strong everyone but allow yourself time to be angry and sad.... Just don't stay in that space. Community is super important

JC

Community Member

13 days ago

Thank you Julie. God bless you.

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Living with Low-Grade MDS: Seeking Advice and Support

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