Living with MDS (Myelodyplastic Syndromes)

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.

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

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?

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.

another…no idea what this is:

ERYTHROCYTE SEDIMENTATION RATE, BILIRUBIN TOTAL AND DIRECT, COMPREHENSIVE METABOLIC PANEL (CMP), C REACTIVE PROTEIN (CRP), URIC ACID, RETICULOCYTE COUNT, CBCWD FOR HEME PATH CONSULT (OUTREACH), COPPER, IMMUNOGLOBULINS (IGG, IGA, IGM), HEPATITIS B SURFACE

This is the test I had:
MISCELLANEOUS PROCEDURE, SENDOUT, BONE MARROW DIFFERENTIAL UNILATERAL, FLOW CYTOMETRY FOR HEMATOLYMPHOID NEOPLASM, COMPLETE BLOOD COUNT, DIFF RETIC, MANUAL DIFFERENTIAL WAM, CHROMOSOME ANALYSIS, BONE MARROW. All greek to me,

I’m glad to read your wife is regaining some normal functions after her stroke. That had to be frightening for both of you!

Telling your family about your diagnosis is certainly a personal choice. There’s quite a bit on your plate already with aiding in the care of your wife. Since you don’t have a treatment plan yet and are sort of waiting for the other shoe to drop, you might end up with a lot of questions you can’t answer for your family at this time.

But you may need them in the future if you go ahead with a BMT. You’ll need to have a full time caregiver for a length of time. Your wife may not be able to meet the challenges of accompany you to appointments, overseeing meals, self care, etc. I’m not trying to frighten you, but it is the cold reality of the first few months after a BMT.

Regarding your MDS diagnosis and exercise.
Moderate exercise is good. You want to maintain as normal and healthy a lifestyle as possible. But you don’t want to overdo things either. If you become fatigued then listen to your body and rest or back off in the intensity. If you require treatment in the future, the healthier you are going into treatment can help with mental attitude and recovery..

Do you recall in your previous blood tests the mention of the term, blasts? These are immature blood cells that become specialized cells as they mature inside the bone marrow. There are generally only a very minimal amount that would show up in a blood smear from labs as they tend to stay in the bone marrow. As the percentage of blasts change in blood work that may determine the need for treatment timing.

If blasts are found in circulating blood it can be an indication of an over-proliferation of the immature cells. As they reproduce out of control, they eventually overcrowd all the other healthy blood cells and then enter the blood stream. Usually there is a mutated gene which doesn’t allow the cell production to switch off.

What were your symptoms that led to the diagnosis? Do you remember seeing a mutation listed in your blood work?

She is healing well. Still has balance and vision issues but she is functional. I have not told my family about my MDS. my Dr. said to wait some time to see what happens over the next 2 months. Also he thinks family anxiety won’t help any of us. What are your thoughts. Also is moderate exercise good?

I understand the ‘not going down a rabbit hole’ of mis-information that we can find on the internet. But I also feel that knowledge is power and if you’re in the potential group for progressing to AML, then you definitely want to be proactive. I had AML and you do not want to wait to that point.
You might consider getting a second opinion. Especially if you’re not getting a good vibe from your doctor. We don’t have to be best friends with our doctors but we do need to feel that they are concerned and part of our team…and not holding us at arm’s length or being dismissive.

I’m sorry to hear your wife had a stroke. Is she recovering well?

My Dr does not have good bedside demeanor. Very short on details from my questions. It is a “let’s see what happens.” Next blood draw March 27. Counts are as he says “in the safe zone so far.” He did say this would likely move to AML. That scared me. Right now, against his suggestion of not reading about MDS, I am learning a lot. My wife just had a strong a fews months back. So I am busy.
Thank you.