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Myelodysplastic Syndrome (MDS)

Blood Cancers & Disorders | Last Active: Mar 31 3:15pm | Replies (51)
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@davidkreuser

Iwas diagnosed with MDS in Jan 22. I was taking injections of "GRANIX" bi-weekly for approximately 28 weeks, with no conclusive evidence of any improvement. My whites, reds, platelets, and neutrophils are all very low. At this point I am not sure what treatment is the best for me. I am 70 years old, single, never married, and no living relatives. I am currently enjoying life and taking the punches as they are thrown. I recently had a bout with pneumonia putting me in CC unit for two days, but recovered and continuing one day at a time. Any suggestions or options for my continued treatment

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Lori, Volunteer Mentor | @loribmt | Dec 2, 2022

Hi @davidkreuser, welcome to Mayo Connect. One day at a time…that’s a key to happy survival. ☺️ You sound as though you’re able to take those obstacles life tosses out at you. MDS is a new challenge for you that wasn’t anticipated!

Myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed or don't work properly There are at least 6 subtypes of this blood disorder so it’s important to find the specific type. Some people are fortunate to not require any meds for sometime and others find benefit in treatments to delay the progression of their disease.
If you haven’t seen this video yet, I found this helpful in explaining MDS and the possible treatments. It’s from the hematology department at Mayo Clinic.

https://connect.mayoclinic.org/blog/hematology/newsfeed-post/myelodysplastic-syndromes-treatment-past-present-and-goals-for-the-future/
Along with the Mayo informational article on MDS:
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977

We have a number of members in this group who have MDS. I’d like to introduce you to @5qdeletion @cybears @jaylevel1 @esperanzam @lithuanian @kjjjrader and @ikampel2. I hope they’ll be able to chime in and give you some suggestion and options for what has worked for them.

You’ve been on Granix injections for 28 weeks. If your doctors haven’t seen any changes have they discussed other treatment options with you?

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