Living with MDS (Myelodyplastic Syndromes)

Thank you

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.

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
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From Verywellhealth:
https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548.
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?

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

I am trying to read all the comments here. I hope I didn’t miss anyone’s. Thank you all for responding! Tomorrow the nurse will call to educate us in what to expect. Can you suggest questions we should ask her?

Yes, it is all scary. And don’t do Dr. Google that will really scare you. I’m not saying the process is all easy but effective. Please reach out if you have any questions. Also like I said Lori and the Mayo connect were my life line and still are since my husband also has Parkinson’s. Hugs

Hi Cindy, Have you had a chance to read through some of the information in the reply from @colleenyoung? I know there’s a lot to take in with a new diagnosis of MDS for your husband.
There are different subtypes of MDS, usually with specific genetic mutations which can be behind the changes in the bone marrow producing blood cells. Treatment options depend on the type of MDS.

From what you’ve mentioned, it appears your husband has a subtype that requires attention right away in getting his treatment started. He’s being referred to Mayo Clinic for a potential bone marrow transplant which tells me he has a little more aggressive form.
That doesn’t mean panic! In some types of MDS, chemo may work well. But long term remission, in some cases, can be helped with a bone marrow transplant (BMT) At this time it is the only potential cure for MDS.
There are several members in the forum who have gone through this process for MDS with wonderful results. @katgob and @jrwilli1 already shared their positive stories with you. I had a BMT almost 6 years go for AML. I’m in a durable remission and feeling as though nothing ever happened. So there are happy endings to these stories.

What can I do to help you and your husband?

Just reading post. I am so glad to find this ! We have no idea what to expect
John’s doctor needed call mds cancer and he called chemo just getting an injection. I think he doesn’t want to scare us. The literature was the eye opener

Thank you so much

Sorry to scare you Lori. No all things are good on the cancer journey. I just wanted Cindy to know how fast things can move when the doctors are worried. Lori you have been my rock through so much of that whole process.