Myelodysplastic syndromes (MDS): When do you need to start treatment?

Again thanks for the encouragement an positive motivation

Lori: How old were you when you had the SCT? I and my care team were considering it based upon the 1st 2 biopsies. Then 3rd biopsy was in the normal range. So, now I am Watch and wait. I am turning 70 soon, so I have a limited window for the SCT.

Hi @janetlen, I just read your first post regarding your diagnosis with MDS this summer and was going to answer with info about the condition/treatments if it progressed. You beat me to it…a SCT is generally the direction taken for longevity if possible. Myelodysplastic syndromes (MDS) are a group of disorders caused by blood cells that are poorly formed or don't work properly because something is amiss in the bone marrow. Having a stem cell transplant (bone marrow transplant) which essentially replaces your original bone marrow, gives you a new chance to start over.

To answer your question, I was 65 at the time I was diagnosed with AML, February 2019. Three mutations made it clear that a bone marrow transplant was my only option for a future because of the strong probability for relapse.

So in June of 2019, at 65, I had an allogenic transplant using cells from an unrelated donor. Being 4.5 years on the other side of transplant, knowing what I know now, I’d do it all over again without question.

Age can be a factor. However, I mentor several people locally at my cancer center who have gone on to have transplants. Three of my newbies were over 70 when they went through the program. One gentleman was 75 and in robust health before he required the transplant.
They’re all doing really well. The people who had AML first, going through many rounds of chemo like me, have taken a little bit longer to recover and get their full strength back. One woman who had MDS but with blasts (immature blood cells) showing up in subsequent blood work had her transplant in March this year. She has recovered remarkably quickly because she hadn’t been very ill previously. So that may be a determination for your team to consider. Going into this now, while you’re healthy is a good option.

Obviously there are risks associated with the transplant. Depending on what your MDS risk level is, it becomes a risk vs reward discussion with your team. Having a SCT will require a dedicated caregiver for several months.

Have 3 biopsies with the 3rd one clean is a good sign. How often do you have blood work repeated?

Hi Howard, @tyson1221. It’s been quite a few months and I just wanted to check in to see how you’re doing! Has your MDS progressed? How are the treatments going for you?

I just went from blood work monthly to every three months. I think either God is healing me or bone marrow is not the same at every location in the hip. One oncologist is uncertain about my theory, but the other agrees with me. Maybe you can ask a pathologist where you work? Right now my blood work is stable. White blood cells are coming back to normal. Red blood cells are not terribly worse. Hemoglobin is hovering about 10-11. Oncologists are talking about the mentholating agents. I want to avoid becoming transfusion dependant. I may ask for another biopsy sometime next year. The differences between the 3 I had are a little concerning. My Ipss-R and -M are both low, even with the biopsies showing rxcess blasts because my CBCs are not horrible. I had an aunt who had Myelofybrosis and then developed AML.

Hi @janetlen. It’s interesting that you had 2 questionable bone marrow biopsies and the 3rd was clear. That would be good news. From my understanding (and I’ve had 13 of them) a bone marrow biopsy is basically a point check…looking at a single point in your marrow. So there may be differences if biopsies were taking from other areas. It can take a while for conditions such as MDS to proliferate so not every area may be involved at one time.

The samples taken are a core specimen of the marrow and an aspirated sample of the peripheral blood also from the marrow. When analyzed, these detailed results give your doctor a picture of the condition of your marrow and its ability to produce healthy blood products. But again, it is from a single area.
A better barometer is the overall condition of your peripheral blood…blood taken from a routine blood draw. The reason being is that blood changes come from within your bone marrow. When there are an excess of defective cells within the marrow they begin to spill out into the peripheral blood. If the peripheral blood is normal, blood numbers are stable, and the biopsies look good, then this condition most likely isn’t proliferating very fast which warrants the watchful waiting/active surveillance mode. The fact that your doctor has lengthened the leash between visits says that they’re confident that this isn’t developing very quickly. So you may not require a transplant any time soon unless things change.

Just keep up with your routine blood work and in the meantime live life like you did before the diagnosis. What led you to the diagnosis? Were you experiencing symptoms or was this from a followup to routine blood work?

The 1st 2 biopsies showed 5-10 blasts. The Drs thought they did not make sense with my relatively good blood work. Since 2020 I had low neutrophils and high blood volume, but nothing was being done about it. Then this year along with low white blood cells and high blood volume I had low red blood cells and the investigation began. I was referred to a stem cell specialist after the 2nd biopsy. I was preparing to make that choice and then had the 3rd biopsy which had blasts in the "normal" range. It's been a challenging year. I hope to remain Watch and wait for a while but will request another biopsy at least yearly. I do not want to get beyond the window for a transplant. As I understand it, the 5 year survivability for transplants is 30%. Quality of life is more important to me than quantity. Before I had the diagnosis, I was experiencing fatigue and did not know why. Now I experience some shortness of breath. So things are not the same. The oncologists think I should not have the symptoms, but I do.

Hi Janet. I understand your desire for quality of life over quantity. There were days I questioned that myself while going through treatment. 😉 However now I don’t regret one moment. I’m coming up on two major birthdays this year; my 70th b-day in January, and my 5th rebirth day from my stem cell transplant in June. I quite literally would not be here without that transplant and the gift of life from my donor.

I’m not sure where your statistic for the survival rate of 30% for SCT came from. From my understanding it’s up in the 75% + range and increasing annually with advances in treatment…depending on variables of course.

In my own case, I had AML with 3 mutations and then a SCT. From what we learned, if I chose only chemo to treat my AML at the time, my 2 year survival rate was in the single digits…none existent for 5 years. With the transplant, my 2 year survival rate increased to 50/50. If I went 2 years without relapse, statistically, my odds of survival escalated. And now, at the 5 year point I should have the same survival rate as any healthy person. For me that was a no-brainer.

However, a SCT comes with its own set of risks and possible mortality. There are also potential issues with graft vs host disease (GVHD). Most are annoyances, some, however, are debilitating. Chronic GVHD issues are common and can be with us for the remainder of our lives. Most symptoms are manageable but some can distract from quality of life.

Your bloodwork and biopsies don’t appear to be problematic at this point so that is why your doctor has you on the watch and wait. It’s not abnormal to see some blast cells in the marrow. That’s where they develop. But when they show up in the peripheral blood samples that’s when they raise eyebrows. You’ve not had any discovered in your blood.

You do have a little lower than ‘normal’ red blood count which may have something to do with your shortness of breath…not as much oxygen circulating. Fatigue and shortness of breath are common with MDS. Keep a little journal of your symptoms like fatigue and shortness of breath. We don’t all fit into neat little columns of statistics, so just because you’re not supposed to be having symptoms doesn’t mean you’re not!😉

A couple more articles for you about MDS and treating with a SCT.
https://www.cancer.org/cancer/types/myelodysplastic-syndrome/treating/stem-cell-transplant.html
A good article on Blast Cells.
https://www.verywellhealth.com/overview-of-blast-cells-4114662
Try not to worry about your window for transplant closing. Like I mentioned previously. I have people I’ve mentored well into their 70s who went for a SCT. One gentleman was 75 (now 78) and he’s like Superman. ☺️. You may not even require one, so worrying ahead of time is robbing you of enjoyable moments. Have a happy, healthy New Year.

Happy Birthday! We turn 70 a few weeks apart. Mine is coming up just before the end of the year. I am a '53 model and you are a '54.

Did you have MDS before AML?

Happy Birthday to you too, @janetlen. We’re both Classy Chassis, eh? 😉 Not sure I’m in pristine conditons though… there’s a few dings, dents and in need of some detail work. But I did have a complete fluid change. 😂

There’s no indication that I had MDS before developing AML. I’d had my physical in July of 2018 and blood panel was perfectly fine…no indication of anything amiss. (I’ve looked back in records just to make sure, now that I know what I’m looking for).
Sometime after that, by autumn 2018 something misfired. I had acquired 3 mutations that set the ball rolling. My local and Mayo oncologists have all said that this was random and I may never know what ‘event’ if any, precipitated these mutations. I didn’t even have symptoms until 3 weeks before it was almost too late…which started 1 day after my 65th b-day…happy bday to me, huh?

Did you have next generation sequencing done? It can be helpful in evaluating the potential risk for advancing MDS to AML.