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Myelodysplastic syndromes (MDS): When do you need to start treatment?
Blood Cancers & Disorders | Last Active: Aug 5 7:58am | Replies (26)Comment receiving replies
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.
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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.