← Return to Living with MDS (Myelodyplastic Syndromes)

Discussion

Living with MDS (Myelodyplastic Syndromes)

Blood Cancers & Disorders | Last Active: Apr 18 2:35pm | Replies (147)

Comment receiving replies
@cindyborch

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?

Jump to this post


Replies to "I am trying to read all the comments here. I hope I didn’t miss anyone’s. Thank..."

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
~~~~~
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?