Living with MDS (Myelodyplastic Syndromes)

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
~Verywellhealth:
https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548
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?

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?

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

It’s very normal to feel overwhelmed with your diagnosis and the need for a BMT. I know the feeling! The BMT process can have its little challenges but well worth the effort to have the opportunity to be in a durable remission.

There is a time commitment for the transplant. Each clinic will have their own protocol. Some institutions treat in-patient, where you are in the hospital for several weeks, then released to an offsite lodging for another few weeks of recovery before going home. I was at Mayo-Rochester where we’re requested to reside within 30 minutes from the clinic for about 100 days or so. I was an ‘out-patient’ for most of the time. My husband and I relocated to a hotel suite for 4 months. You’ll find out more when you have a conference with your transplant doctor.

Once accepted for transplant, your transplant doctor will order blood work for DNA analysis to pair you with a bone marrow donor on the registry. Once there’s a donor match found…the process begins.

You’re fortunate to be near two larger clinics. You might want to do some checking to see which clinic would be a better fit for you and what they offer for requirements of stay and followup care. Your BMT team will be your lifeline for quite a while. One little note that I will share is that it would be good to find out the followup schedules for post transplant patients. I know of some clinics stop following patients within a year or two. From my experience at Mayo, I’m relieved to know that I am a patient for life and will continue to have annual follow-ups with my transplant doctor. If there are ever issues, he and my team are still my lifeline. That brings a level of comfort for me and my husband.

Have you had a bone marrow biopsy yet? Has there been genetic sequencing to see if there is a mutation involved in your diagnosis?

I'm not to far from U of M or Henry Ford. My white blood cells are normal so my immune system isn't the problem just my marrow iisnt producing the hemoglobin l. So far I've had three blood transfustions in two months just to keep it above 7. The drug my hematologist is trying to get me on starts with a r I think. I was a little overwhelmed with the news.

My MIL has issues with confusion and ended up in the nursing home for a month until her sodium levels evened out. Glad you're hubby is back on track! Keep climbing, only upward and onward! 😊🙏

Hi @nylechojnacki. Welcome to Connect! Goodness, a hemoglobin of 3.1. You were running on empty! I’m sure you had one or more blood transfusions to get you back up to a comfortable level and out of the danger zone. But you do have a seriously compromised immune system right now. So please make sure you wear a mask if you’re in a public area and avoid any illnesses if you can.

To temporarily get this under control your oncologist hematologist may be having you start on Azacitidine (Vidaza) or Decitabine (Dacogen) for now. But he is correct, a bone marrow transplant remains the only potential cure for this form of blood cancer. If it hasn’t already, it can progress into a more aggressive form of leukemia called Acute Myeloid Leukemia.

The reason you’ll need a bone marrow transplant is because your old marrow is no longer able to produce healthy blood cells and because it is your immune system, it is no longer functioning well. There may be some mutations involved that has set the ball rolling on this cancer. Your old system no longer recognizes these cells. So getting a new immune system gives you a second chance at life and helps you fight the return of this leukemia.
Do you recall on your blood test results seeing the term blasts? Also, do you have any indication of mutations that may be involved?

I know this all sounds very daunting and quite a shock. I had AML and spent my first 5 weeks in the hospital when admitted with a hemoglobin of 4.7. I had a bone marrow transplant 5+ years ago (at 65) which saved my life. I’m in a durable remission, cancer free and at 70, living a healthy, active life.

I know you’ll have lots of questions. I’m here for you as well as a growing number of members in the forum who have had MDS or AML or other blood cancers that have required a bone marrow transplant. We’re all at varying anniversaries post transplant from 11+ years to a few newbies who are just going through the adventure now. We will answer any and all questions you might have.

Are you near a large medical center which can do the transplant for you?

Hi Hollie, thanks. That did make things clearer. I was getting the doctors mixed up.😉
Hm. I can see your conundrum. I’m wondering the same thing you are about the infusion. If it’s an infusion of platelets, that doesn’t seem like the type of thing a pain management (let’s call it PM) physician would do. For me the transfusion was always administered in the infusion center or hospital by the oncology staff or RNs. Could your oncologist have meant that the PM could go ahead with the pain med injection not platelets? A platelet count of 62,000 is low but not generally low enough for a platelet transfusion. So I’m really not sure either.

Well, since you’re going in the 11th for a consult not the shot, perhaps you’ll get better clarification. I’m sure you’d like to get that discomfort taken care of! What I am curious about is the MRI results showing MDS?

Hello I was diagnosed with MDS today after a week in hospital with a hemoglobin count of 3.1. my doctor is trying to get me on a new drug I can't think of the name. He says a bone marrow transplant is the only way to beat it. Is it??