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MDS Watch and Wait

Hi everyone!

I am on Watch and Wait for MDS. My MDS diagnosis is Refractory Anemia with Multi Lineage Dysplasia (Red blood cells and Platelets).

I've been on Watch and Wait since February 2021. I'm 61 years old.

I wonder how many of you have been on Watch and Wait and for how long.

This is such a nebulous diagnosis. It's always floating around but never really does anything.

Looking at my graph of past blood work, I believe I've had this since 2019.

Could you share your experiences with me?

Thank you so much.

  1. HI ,
    "Watching and waiting" can bring on a ton of emotions including anxiety, frustration, and worry (just to name a few).
    As we look for others to chime in with their personal experiences, I thought I'd share these two articles that may provide some helpful insight: and
    Sending you tons of positive thoughts, Doreen (Team Member)

    1. Oh thank you so much Doreen! I really appreciate your help!

      1. I too was on a wait list for several months with another cancer. While it is easy to feel like you are doing nothing in reality you really are moving in the right direction. The hardest part for me was stopping my mind from focusing on all of the imagined negative outcomes - which by the way never happened. Once you learn you have cancer it is so easy to miss the many wonderful things that come in to your life every day.

        My free advice and worth every penny is ... Try to stay engaged in your life as much as possible. Keep active even on those days when all you want to do is curl up somewhere and cry. If you are feeling down go out for a walk and look for those small joys like squirrels running up trees, birds chirping, kids playing etc.

        Meeting friends over coffee or after church etc were very easy ways to keep engaged especially if you focus on their lives vs your current journey with cancer. Lots of folks here have made this journey with blood-cancer and as Doreen noted we are here for you in the weeks and months ahead. Dennis( TEAM)

      2. Thank you so much! I am doing exactly that. Traveling to meet friends, making hats (my business) and walking my dog 2x a day. It's taken me two years to understand the course of this cancer and I hope to remain on watch and wait as long as possible.

        I don't want to ruin the time I have worrying about the future.

    2. Welcome Bonnie! Well let me say Watch and Wait was a happy fest for me in that, I didn't want to start treatment- or was not in a rush to start treatment. I had a good run of 5 years until all hell broke loose and I got deathly ill with another issue; this led me to active treatment ASAP! I know it may feel like toddling, but it's a long and rough ride for most so Now I get why they proceed with the watch and wait if things are somewhat stable. Wishing you the best on this new journey!

      1. Oh thank you so much Yolanda. I am dreading starting treatment. I guess I'm not good at waiting! Every little thing that happens makes me wonder if my disease is progressing. Sometimes the symptoms are just that of aging!

        Thanks for helping me realize I should be quite happy I'm still on Watch and Wait.

        1. I was really concerned after learning that I would need to be on Chemo.

          Then ...I learned about having a port installed for chemo treatments .
          Then ... I learned my first treatment was to be at the main hospital just in case I needed emergency care due to the chemicals.
          Then ... I learned it was going to be a 8 hour procedure.

          Candidly I was in a self-created hurricane of emotions

          Then ... The first day of chemo passed without incident. Every 3 weeks for the next 6 months I successfully drove myself in for treatment and home. All of my presumed concerns and fears never came to pass. I did have some issues because I was not drinking enough water. It was something I never anticipated. Lesson learned here was we all react differently to any of these treatments.

          It is not easy to put potential future treatment protocols out of your mind. That said if and and when you need treatment the best approach is stay away from Dr. Google and take it one day at a time. Dennis( TEAM)

        2. The journey really is a process, and there are a bunch of small stages and variables for this unknown ride. I totally get your anxiousness. You got this!

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