High Risk Myelodysplastic Syndrome: What to Expect?

I have CLL which is chronic, to keep things in perspective remember the day your born you start to die. That outlook doesn't work for everybody but it is a different way to look at things.
When it happens it happens

I was diagnosed with mild MDS at 65. Not eligible for BMT. I had transfusions for about a a year. Was greatful to receive and live with enough energy to enjoy life. Now I am on Lenalide which i have responded well to. It depends on the side affects of the chemo offered. It is not a cure. I would consider quality of life.

Hi, Helen

Thank you for your post! My partner has been diagnosed with High DMS. I believe that's why her doctor has advised chemo. But he was clear in saying that the decision is my partner's and that he would work with her if she should choose transfusions. My partner will make her decision tomorrow. She knows that she has my support no matter what path she chooses to follow.

Best wishes,
Ray

My mom’s suggested treatment was 5 days of Vidaza, 3 weeks off, repeat for as long as she could tolerate it….

She is tolerating no treatment quite well….

Hello!

Thank you for your message, rjperk633 (@rjperk633). I relayed your words to my partner. She'll begin her chemo next Monday: one week of Vidaza, then three weeks off, then repeat. My partner has asked what level of MDS your mother is dealing with (my partner's is High), and whether your mother has had to receive occasional blood transfusions in addition to her chemo.

Again, thank you for your note! I wish you and your mother the very best!
Ray (@ray666)

I do not recall anyone describing her risk factor…her last visit shows diagnosis is MDS- IB2…. Not sure if that helps you to compare..

Mom has thus far not needed any transfusions and her bone biopsy was November 2024.

She has been anemic since March 2023 when she was hospitalized for Covid and Afib. We found this out when I gathered all records before going to see the oncologist.. We were not told to follow up with anyone for the anemia; I believe it was assumed she was anemic from the Covid bout that lasted about two weeks. Someone dropped the ball but we see this as a blessing is disguise…. She didn’t have the mental burden of a diagnosis…

She did bounce back but within a year we were headed to oncology for the eventual diagnosis after the biopsy. She had a two week period of extreme fatigue previous to seeking medical care and eventually oncology.
She was on the sofa a lot; this is very abnormal for Mom.

Her last blood work test was slightly below the previous one 3 months before… and she is having more fatigue but nothing major. She sees oncologist again in October just to recheck blood since she has opted for no treatment. Her fatigue levels will dictate if she needs an appointment sooner…..

Hope this helps you sort thru things….

I think MDS- IB2 is likely intermediate risk which would be same treatment protocol for a MDS high risk.

The way I understand the disease progression is just a certain number to quality as MDS or CML.

As example if Mom is 10% blasts it’s considered MDS.

Also as example if Mom is 12% blasts or 20 %, the disease is called CML ….

I’m not sure the oncologist told us what that number is to differentiate where it’s no longer considered MDS. I will certainly to asking or researching this number.

Good morning, rjperk633 (@rjperk633)

Thank you, thank you for all this information! I went over it all with my partner. Your messages have helped her refine many of her remaining questions. She's waiting right now for a call back from her hematologist's nurse. This is a whole new world for her, as you might imagine––as it is for me, too. As she'll not have her first week of chemo until next week, she and I are both trying to get a sense of what will be expected of us (when to be where? for how long? what to expect? etc.).

You mention blasts. She and I are trying to figure out just how much of the question of blasts impacts her particular MDS situation. The word, blasts, has been mentioned in passing, but not with enough explanation for us to be able to place the concept among all the other new names and numbers we're hearing. We've much to learn!

I did take my partner for a blood draw yesterday. Her numbers were low (hardly unexpected). We thought perhaps her doctor would phone when he saw the numbers and urge my partner to get yet another unit of blood, even before she begins her chemo; his nurse did phone, but told us, although the lab numbers might otherwise warrant a blood transfusion, the doctor told us only to watch for any new, alarming symptoms (bleeding); otherwise, continue to contend with the extreme fatigue until chemo begins next Monday.

Again, a MILLION THANKS from both of us for your super helpful messages!
Ray (@ray666)

I can definitely relate to your current predicament… I wanted to learn as much as possible as quick as possible and this site was very helpful…

I did have a reference point. The mother of a friend was diagnosed right before with my mom, but diagnosed at CML.. One treatment put her in hospital and after a week she stopped treatment and was deceased a week later…. That got our attention that things could go south rather quickly and my mom knew she wanted not part of the treatment route…. That was a reality check about quality vs quantity..

Remember the other person had converted from MDS to AML… the Vidaza was the same treatment along with an oral pill of which I never learned the name.

Sometimes you just have to let the affected person go with what’s in their gut feeling…

We're going to start with what the doctor advises: 1 week of the Vidaza, then 3 weeks off, with 2 blood draws per week to monitor how things are going. My partner is prepared, however, to call it quits with the Vidaza if, in her estimation, she continues to go downhill. The way she's feeling right now (in spirit), she wants to get some sort of therapy underway, although she'll not be shy about telling her doctor let's stop this or change this or try something else. We had a phone chat earlier with the doctor's nurse; the nurse is very forthcoming––pulls no punches––which my partner and I both appreciate. ––Ray