Living with MDS (Myelodyplastic Syndromes)

Hi Lesley, Welcome to Connect. I’m glad you joined into the conversation. The reply that you read was a pretty good overview of MDS with some helpful information to get you started. I know a new diagnosis can leave you feeling clipped off at the knees, so being able to talk with someone who’s going through the same crazy times can ease the anxiety.

What has your doctor told you about your condition? Have they recommended any type of treatment?

Thank you for this! Just got diagnosed today so I'm new in my journey.

Can you share your experience with the bmt? Im waiting for one myself . No one likes to discuss it much. How long ago was it and are you rid of all that was wrong prior.

Oh my. 93. I say go up to the subject line on the top of the page and enter MDS. I had MDS, but i am sure none of us had the exact same symptoms.
Did your dr give blood results hence the watch and wait? A bone marrow transplant is what i had, but at 93 you would need other options.
There is a lot to read. Maybe "What is MDS"!

More will post to give you info. There is a bunch of us on connect with MDS. We are here for you.

I am 75 and I have been wondering the same thing. 2 years ago in June the doctors notice changes to my bloodwork. By Christmas they were concerned. I had a bone marrow biopsy and MDS was diagnosed. I do like the expression ACTIVE SURVEILLANCE better than wait and watch. I have been stable since then. My specialists have been concerned about me getting infection. So far nothing.
I am tired and short of breath.
I am told that when I want to improve my quality of life, I can start treatment. My question is am I better off starting treatment asap or waiting for a change in my hemoglobin levels etc. ? Pretty laid back normally but have had a busy summer so have been more tired. Is there any benefits from starting the treatment now? Any advice would be helpful.

Hello @momz @nbadry @rrivory @honeymae. I know that you’ve all been diagnosed with a blood condition called MDS or myelodyplastic syndrome. Some of you are still in the ‘watch and wait’ period or a kinder term would be active surveillance, where you don’t require any treatment. But because the bone marrow isn’t functioning properly, you may already start feeling some of the symptoms of your bone marrow not turning out healthy blood cells. I thought it might be helpful to give you some articles to read which really help spell out the conditions of MDS in an attempt to answer some of your questions about why the wait for treatment and what treatments are available should you require them.
Because I’ve already had a very aggressive blood cancer (AML) and happy to say I’m now ‘fit as a fiddle’ and in a durable remission, I want to help you understand that even though your diagnosis can be scary, this doesn’t have to take over your life or define you going forward! @rrivory summed it up nicely, we can’t dwell on the “what ifs”…that just gives us too many opportunities for negative self talk.

So, the best attitude is to pick up where you are and face this head on. Knowledge is power so here are the articles I feel are good sources for your information.
https://www.healthline.com/health/cancer/mds-hematology
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https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548.
I really do appreciate how frighting it is to read through these articles and worry that your diseases may progress. @rrivory, is already having discussions of having a bone marrow transplant which will give her a completely new immune system…for a second chance at life. It works! I had one 4 years ago and now feel amazing, like nothing every happened. I was 65 at the time…now 69 and feeling incredibly healthy and fit. A friend I met at the same time I had my transplant at Mayo-Rochester had MDS! She is also doing fabulous…no more blood cancer!

@rrivory, there are quite a few of us in the forum who had a SCT using donor cells (allogenic transplant) and we’ll help you along your journey so keep me posted with updates, ok?

Hi Lori -- Thanks for asking about my sweet wife. There's a story to tell, but, overall, things are looking up, thank the good Lord. As you know, Rachel's blood counts have been dwindling for the past 18 months. She's had several transfusions and plenty of Procrit shots. What you don't know is that, for the same 18 month period, Rachel had a benign tumor inside her spine which was pressing on the spinal cord, causing lots of pain and numbness. According to most doctors, the tumor has nothing to do with the MDS and the blood numbers. Two weeks ago, an amazing "miracle worker" surgeon, Dr Kelly Gassie, removed the tumor. There was a lot of doctor clamor before the surgery because low WBC counts would certainly lead to post-operation infection. Nevertheless, Dr Gassie agreed to Rachel's wishes and removed the tumor and, after two weeks, only a faint UTI (from the foley) is present. Further, what is really wonderful, is that our first CBC after the surgery shows marked improvement in blood numbers. One hematologist said "Your bone marrow is responding to the tumor removal." I will wait for a second CBC before popping the champagne, but I sure like hemoglobin at 9.3. It has been as low as 5.2.

Hi Lori -- Thanks for asking about my sweet wife. There's a story to tell, but, overall, things are looking up, thank the good Lord. As you know, Rachel's blood counts have been dwindling for the past 18 months. She's had several transfusions and plenty of Procrit shots. What you don't know is that, for the same 18 month period, Rachel had a benign tumor inside her spine which was pressing on the spinal cord, causing lots of pain and numbness. According to most doctors, the tumor has nothing to do with the MDS and the blood numbers. Two weeks ago, an amazing "miracle worker" surgeon, Dr Kelly Gassie, removed the tumor. There was a lot of doctor clamor before the surgery because low WBC counts would certainly lead to post-operation infection. Nevertheless, Dr Gassie agreed to Rachel's wishes and removed the tumor and, after two weeks, only a faint UTI (from the foley) is present. Further, what is really wonderful, is that our first CBC after the surgery shows marked improvement in blood numbers. One hematologist said "Your bone marrow is responding to the tumor removal." I will wait for a second CBC before popping the champagne, but I sure like hemoglobin at 9.3. It has been as low as 5.2.