I have recently been diagnosed with MDS, and have so many questions.

Posted by mick4sb @mick4sb, 2 days ago

I have just been diagnosed with MDS, and have so many questions. I will be going to Mayo Clinic for follow up opinions and understanding options for treatment plans based on my other complications, CKD state 4. Does anyone have a list of questions that they would recommend that I ask my Hematologist/Oncologist and prepare questions for my visit to Mayo? Thank you.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Best of luck
I would for sure include how your recovery will be- the schedule and any issues there would be , to include phone call contacts for health care recovery
Worst ever for me was not treatment but recovery

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Thank you. Really appreciate the comments.

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Welcome to Connect @mick4sb You’re already getting some great information from @janetlen and @scy
As mentor for the Blood Cancers & Condition support group I thought I’d toss in a few more links of information for you about MDS or Myelodyplastic syndromes.

This comment contains my go-to articles about MDS that I wrote to some other newer MDS members.
https://connect.mayoclinic.org/comment/925760/
The entire conversation is in this discussion:
Living with MDS
https://connect.mayoclinic.org/discussion/living-with-mds/
Here are a list of some questions you might 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?

Another good discussion is this one: Your tips on how to get off to the best start with a new specialist:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
I may be a little biased but the hematology department at Mayo-Rochester is second to none. Mayo is the best! I’ve been on the receiving end of care there and owe them my life.
How long ago were you diagnosed? Which Mayo Campus will you be visiting? Are you set with lodging? Do you have your patient portal set up?

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