Living with MDS (Myelodyplastic Syndromes)

I've had two bone marrow biopsy. As for sequencing I don't believe so.

My husband was on watch and wait for 2.5 years. Hgb was down to 8, he had heart stents in March, and vascular surgery on both legs (Oct/Dec). Docs want his hgb. higher for optimum healing and health. First shot yesterday, so now we watch and wait to see how it helps. 🙏🙏🙏 Good luck to you! ❤️

I am a recently diagnosed with MDS after beating hairy cell leukemia. Counts never went up a bit but are borderline. Guess I am a wait and see at 66. What is the age cutoff for a BMT? Trying to live a normal life. Where do I find the best MDS docs?

Welcome @gothman. There are different subtypes of MDS, some having more of a tendency to potentially progress into a more aggressive type of leukemia than others. So treatment will depend on your particular form of MDS.

MDS, or Myelodyplastic Syndromes, is actually a group of blood disorders caused by blood cells that aren’t formed properly or are not functioning. Here are 3 of my go-to articles that do a good job of explaining the condition:

From Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
~Healthline:
https://www.healthline.com/health/cancer/mds-hematology#symptoms
~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
You’ve already been through one leukemia journey and most likely not relishing the thought of another. Hopefully your condition stays stabile and won’t require treatment.

You asked about a bone marrow transplant cutoff age. I personally know several people who have had successful BMTs at 75. It will be dependent on overall physical and mental health, and if there are any underlying comorbidities.
The preconditioning chemo and the riggers of the transplantation itself can be challenging to the body/organs.
If you do precede to a BMT, having a larger teaching hospital, where the bench is deep with medical professionals who have extensive SCT/BMT experience works in your best interest.
As for finding an MDS doctor, often their specialties as listed in bios. Again, a larger teaching institute might give you more options for a specialist. Otherwise, a trusted hematologist oncologist should have the background to treat MDS?
Are you able to use the same hematologist oncologist you had for your HCL? Has your doctor talked about a potential BMT in the future?

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.

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?

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’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?

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,

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