MDS and thin skin: What else to watch out for as time goes on?
I am fairly new here and its been great, talking to people that can talk and post things first hand. I've posted a few times and I've come up with another question from people that have had MDS quite a while. I've been diagnosed with it about 2 months, or at lease thats when the determined I do have it. Personally I think I've had it for 2-3 years as I'm noticed changes in my body. All along I thought it was an old age thing (I'm 77). I've notice lately over the last few months that my skin has become thinner than it use to be. Old age thing?
As time goes on with MDS, As time goes on, what things can I watch for as far a changes as a result from MDS?
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Hi twit1949. I’m 77 also. Yes skin thin but think it’s age. I’ve just noticed my lower legs and feet ate more discolored. Kinda like bruising which I have all over. Tell people who ask about the bruising as rough sex. Some laugh others look at me weird. Still have a hematoma on my leg under my knee from bumping it 12/31/2025.
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2 Reactions@hlmcneely
Please will you both make certain that your CBC-with-a-differential blood work is normal?!?! I had probable MDS for years. One hematologist told me I had it (2024), but it was "too early" for a bone marrow biopsy. He retired and the next heme doc insisted I did not have it. But I got my primary care doc to order CBC's every 3 months (because I had shortness of breath and low red blood cells). And MDS easily turns into AML (leukemia).
Sure enough: 18 mos after the first doc suggested my MDS diagnosis, my white blood cells and platelets dipped down near zero. It happened VERY fast. I was half dead by the time my chemo started. My current oncologist (I love her, never mind that she was my same doubting-doc) now says I saved my own life by pushing her to do the marrow biopsy.
BTW, I was 77 y.o. when this happened. So be alert and ask for some oversight on that bruising! It is a warning sign for many leukemia patients. And the wait-and-see approach can be very harmful. Getting a CBC is easy, and it is cheap. And it is reassuring if all is normal!
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7 ReactionsThank you for your reply. I get blood work every 3-4 months. Had bmb in 2022 and diagnosed with MDs now it’s mf. Been in wait and watch since the start.
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2 ReactionsI have been diagnosed for 2 years and have had concerns for 3. I started injections every three weeks since last September. There has been little change in my bloodwork which I have done every month. Still tired. Always bruised before but more prominent now. This week I have been getting little blood blisters on my hands. Not sure if it is something to worry about.
I do have hot flashes. At almost 76 , it must be the MDS
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1 ReactionHi @brendamarlene. I read through a few of your past posts in Connect. You’ve certainly been so diligent with making sure you get the important labs which helped confirm your diagnosis of MDS. It’s good to keep ahead of this disease and your monthly blood work will be helpful.
Has there been a change in your platelet levels? Sometimes when they decrease it’s not uncommon to develop little blood blisters. But you might want to mention the blood blisters and the hot flashes with your doctor or NP. I was always instructed to note any changes in symptoms with my oncologist, if for nothing else, a baseline for changes. That type of thing.
What type of injections are you receiving? Is this to help increase red blood counts?
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1 ReactionI am taking injections of Aranesp (d arbepoetin Alfa) PFS 500 mcg/1.0 L
It is my understanding although I may be wrong , that it is to increase my white blood cells.
My platelets were fine (155) until fall and were as low as 116 but stable and the last bloodwork it was 120.0 x 10e9/L
My oncologist feels if my numbers, although low are stable that is what we can hope for.
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2 ReactionsHi @brendamarlene The Aranesp you’re receiving is used to increase your red blood cells. With MDS, sometimes the bone marrow isn’t able to keep up with blood cell productions. Most often it involves the red blood cells. In that case, it’s not unusual to experience anemia. So medications like Aranesp help the body to produce more red blood cells.
Have your red blood counts been lower than normal?
@loribmt
My red cell count was panic low at one time but for several months it has just been below normal.