Living with MDS (Myelodyplastic Syndromes)

No recollection of mutation. Symptoms only that my blood counts did not go up after eradication hairy cell. How, when, should I engage at Mayo.

I know what you mean, ‘being all Greek to me’ when looking at lab/procedure results. It really is like learning a new language. I got an education by emersion with my AML/BMT transplant odyssey almost 6 years ago and have gotten pretty proficient with reading results over the years 😅
The information you posted is basically detailing the blood work, testing and procedure you had done to confirm your diagnosis, including chromosome test to check for mutations. But I don’t see an analysis of the results. Those would be good questions to ask your doctor at your next appointment. Though, it sounds like he’s not very responsive to your questions and a little guarded with having you research information about your condition or even telling your family.

It’s never a bad idea to get a second opinion. If you’d like to request an appointment at Mayo, here is a link to the site: http://mayocl.in/1mtmR63

Click the link and follow the prompts as a new patient. A doctor’s referral isn’t necessary.

I’m admittedly a little biased, but the hematology department at Mayo-Rochester is outstanding. But if that isn’t the campus of choice, there are also campuses in
Phoenix, AZ and Jacksonville FL, both equally as dedicated to caring for their patients.

You have time to make decisions. But I understand that you’d like to know more about your questions and not getting many details from your current doctor. Is there an opportunity to request another consult with him?

Have been diagnosed with Mylodisplastic syndrome. How serious is this. Am very short of breath - any connection? What are treatment options?

jschellhaas.
I had MDS. Mu diagnosis last October 2023. The first thing my hematologist did was schedule me for a bone marrow biopsy. That confirmed the MDS. If you had a BMB I would hope your medical team has given you treatment options. They need to see in your blood if there are blasts or other changes that will in time cause more issues.

Go to the subject line above and enter MDS. There are a lot of us here. For me, I had breast cancer 2 years before with a genetic test done finding the BRCA2 mutation. I was given a few choices for my MDS. I had a TP53 mutation too. I did not have the symptoms you describe, yet. Watch and wait or a Bone Marrow Transplant. I thought just a bit of time as i absorbed what my Dr. had told me. At first i was thinking he was kidding. Maybe he got it wrong? I did not feel bad. I did though seek out a hematologist as my platelets and white cells were at the lower end of normal and kept going down. I was no longer in treatment for BC, so why did my blood not recover? That is what i thought of when my dr gave me the choices.
I looked at him and said i want to do the BMT. He said he would activate my name on the Bone Marrow Registry. Within 2 months i had 6 potential matches. One was eventually chosen as the best selection and on April 9th, I received the transplant.
In the end every one of us has a different body. Your blood and body will show where you are with the MDS.
On this site, you will find many stories. Some who have done watch and wait.
Put MDS above in the search and watch the stories that pop up.

I did have a bone marrow biopsy that confirmed my mds. My Hematologist suggested chemo (every day for 1 week each month) not sure if I'm ready for that yet. Thank you for your response.

Welcome, @jschellhaas. It is scary to get a new diagnosis. To help you connect others living well with MDS, I moved your questions to this existing discussion:

- Living with MDS (Myelodyplastic Syndromes)
https://connect.mayoclinic.org/discussion/living-with-mds/
Click the link to read previous posts about MDS and meet members like @katgob @momz @nbadry @rrivory @honeymae @nylechojnacki and many more.

@loribmt provided links to helpful articles about MDS in this comment: https://connect.mayoclinic.org/comment/925760/

What chemo did you doctor suggest? Did you discuss other options too?

Hi @jschellhaas. Honestly, I don’t think anyone is ever ready for chemo. I’ve been there myself and you’re right, the very words spark a jolt of fear. While the side effects can be unpleasant while you’re in treatment, the chemo may rid your body of the cancerous cells and help you live a healthy life ahead.

You’ve recently been diagnosed with MDS. There are different sub types for this disease. Some of them have the ability to progress to a serious and aggressive form of leukemia, which can more difficult to treat.

I don’t know what type of MDS you have but if your hematologist oncologist is suggesting chemo, they may be trying to preempt this from happening.

I’m here for you as well as so many others of us who have had a blood cancer that needed to be treated with chemo. Together we’ll walk you through this uncertain rough spot in your life and help you get on with your future.
Why type of chemo did your doctor suggest? Is this an infusion or in the form of a daily pill?

jschellhaas- Lots of great info has been shared by the beautiful mentors. Check with your dr. on why chemo, which chemo and what does he hope the chemo will accomplish. Did you have blasts or anything else noted in your BMB?