Living with MDS (Myelodyplastic Syndromes)

John’s blast was 8% and the doc said 20% would indicate leukemia. Does that sound right?

Hi Cindy, not every comment here will be relevant to your husband’s case. But those of us who have had MDS or AML, which are related, can understand what you, as caregiver, and your husband going through. It’s important to know the whats and whys of what’s happening.

In some cases of MDS there is a higher possibility of the condition progressing to AML. It can be an advantage with that form of MDS to preemptively have a bone marrow transplant before that happens. The blast cells that were found in your husband’s lab results are immature, defective, white blood cells which are leukemic. Basically, his old immune system no longer recognizes these as cancer cells, which allows those defective cells to proliferate. If they are not stopped with chemo, they will continue to replicate. The expected goal with a new immune system, with stem cells from a donor, is to have it again recognize cancer cells to keep your husband free from his MDS.

I really do appreciate how frighting it is to read through these articles. But I also feel that knowledge is power and it’s better to go into a new diagnosis well informed. Though, like @jrwilli1 mentioned, avoid Dr Google. While there are some helpful articles, others can lead you down a dark rabbit hole of mis-information, producing unnecessary fear and stress.

Here are a couple articles I feel are good sources for information.
From Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
From Healthliine.com
https://www.healthline.com/health/cancer/mds-hematology#symptoms
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From Verywellhealth:
https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548#:~:text=Myelodysplastic%20syndromes%20%28MDS%29%20are%20a%20group%20of%20bone,how%20the%20bone%20marrow%20creates%20healthy%20blood%20cells.
Some possible questions your husband may want to ask:
What type of myelodysplastic syndrome do I have?
Will I need more tests?
What is my prognosis?
What is my risk of leukemia?
If I need treatment, what are my options and what do you recommend?
I have other health conditions. How can I best manage them together?
Are there restrictions I need to follow?

Don’t hesitate to write down concerns or questions so that you can ask the nurse. Having the list in front of you helps you stay on task with the limited time.
I’m here anytime, along with fellow members so that you’re not feeling isolated in this journey with your husband. We have your back. ☺️ Last year at this time, @katgob had the same scenario playing out. And here she is 1 year later, recovering nicely and back to full time job!

You’ll have questions after your chat with the nurse…feel free to talk with us if you need clarification, ok?

LO! My doctor told me, "Don't Google this; just ask me anything." I went home and Googled, of course. (What did she expect?).

That being said, Google is how I found this group and the couple on Facebook so I never would have really understood all this if I hadn't Googled.

Thank you

Thank you for your support and information

I am a retired RN SOENT MY 1st few years in oncology, back in the day chemo was administered in the hospital (83-86). I also dx with melanoma and I stayed away from my books and google! I already knew too much. Thankfully I have stage 1 b and 4 yrs out since excision. Thank you for the moral support

My husband has been fighting CmL and MDS for almost two Hopefully your hubby doesn’t get both and his MDS continue to stay under control.