Diagnosed MDS, What should I ask the doctor at the next appointment?

[Meri T.]

I have just been diagnosed yesterday as MDS , RAEB1, Myeloid 5.6%
The doctor said when it reaches 20 percent then it means leukemia!? (hyaketsubyo)
Here in Tokyo, the MDS patients come in every month for blood tests. So my next appointment is next month.

I have the BMB and DNA etc results. with me, in Japanese, and trying to understand all the medical terms and numbers via google, all the while really tired and scared inside.

What should I ask the doctor next month? My sister suggested asking for an English version so that I could understand the results better. That's the first step.
What does Total Myeloid series 62.8 Total Erythoid series 25.4
M/E 2.47 mean?

Privately, I'm 50 already with an 11 year old daughter who's only focussed on going Back to school, and I feel so helpless, that in all my life I've never joined any forum or even posted on the internet before. Now I think I need all the support I can get. Please help.
Meri

[bailie]

Meri, welcome to this forum. There are many knowledgeable people here. I applaud your effort for more information. It is very important to start immediately to organize everything you receive. MDS seems to be different for each individual. Keep track of your trends in all of the tests you take. The trend is more important than individual results. Some people go for years managing MDS while for others MDS becomes an acute situation.We wish you the very best in results. Let us know as many particulars about your situation such as CBC results and bone marrow biopsy (BMB) results. We all learn from each other's situation.

Yes, you need all results in English. Start thinking/asking about a long term plan. MDS is no bargain when compared with leukemia.

[Neil Cuadra]

Meri,

Your diagnosis is myelodysplastic syndromes with excess blasts (level 1, not level 2) using the widely used World Health Organization classification system. That means that the immature white cells known as blasts have been measured as 5% to 9%, rather than the normal range of 0% to 4%. If it was 10% to 19% blasts that would be called RAEB-2, and 20% or more would be called acute myelogenous leukemia (AML). The goal is to keep the blast count as low as possible.

Here are some suggested questions to ask. If there's a communication problem, perhaps you can bring in your questions on paper and leave them with the medical team, even if they can't answer them all on the spot.

I'd definitely ask what your risk level is on one of the commonly used scales, e.g., low risk, intermediate risk, or high risk. That gives you an idea how likely it is that you'll need to start some kind of treatment. You could also ask what the DNA results indicate, again whether it's a low risk or high risk result.

If you look at a diagram like this you'll see how blood cells are formed in the bone marrow. As I understand it, your lab test is indicating that among your bone marrow cells, 62.8% are in the myeloid part of the tree (which applies to all types of blood cells), and 25.4% are in the erythrocyte part (which is just for red blood cells). The radio of 62.8 to 25.4 (you just divide the two numbers) is 2.47, which is in the normal M/E range of 2 to 4, so that's good news. See here for a few more details.

Learning more about this disease will lead you to more questions for which you can seek answers. That's good, because knowledge is power when it comes to taking care of yourself and your family.

[DanL]

Meri,

Very sorry about the diagnosis. There are a lot of questions to ask the doctor, and Bailie hit on a couple of them. To answer a couple of questions that you had, the m/e of 2.4 is your myeloid to erythroid ratio, or in plain english, white blood cell to red blood cell numbers. Normal range is somewhere between 2:1 and 4:1. Offhand, I cannot tell if the 62.8 and 25.4 are the % of your blood that is basically white blood cells coming out of the marrow versus red blood cells, or if the 25.4 is a representation of your hematocrit level. If it is the latter, that would be a pretty low number as normal is around 40. That would go a long way toward explaining why you are tired.

I will try to answer your questions, but I am a patient and not a doctor. MDS as a disease basically indicates a problem with your bone marrow's ability to produce both healthy and adequate numbers of blood cells Looking at the information you provided, I think that the 5.6% number represents the percentage of blasts, or immature white blood cells that are present in your marrow, thus giving you the RAEB 1 diagnosis. I believe the normal range is less than 4%, although some doctors use an even lower number. The classification for MDS requires that you have abnormally shaped or dysplastic cells in at least one of the three blood lines - platelets, red blood cells, or white blood cells. It also requires that they rule out other potential problems, like vitamin deficiencies and other diseases that mimic MDS. One of the results from the bone marrow biopsy that tends to confirm MDS or some other blood issues is the presence of cytogenetic abnormalities, such as the addition or deletion of all or part of one or more of your chromosomes.

Questions to ask the doctor? Here are a few that I asked, but it probably does not cover the full range.

I would want to know specifically what led them to the MDS diagnosis and if there is a possibility of it being anything else.

What is the treatment plan both short-term and long-term?
What are the side effects of any treatment plan?
What are the costs and benefits of each action? Watching and waiting is a very common approach in MDS as it can move slowly or quickly.
How will any treatment affect my quality of life? There are some treatments that tend to be fairly mild, and others that can really take your energy away.
There is currently not a cure for MDS other than a bone marrow transplant, which has a lot of risk and represents a potential cure.
If they are sure it is MDS, are you eligible for bone marrow transplant? If so, when would they normally move forward to doing a transplant? Again, what are the costs and benefits of doing this?
What should you do to be best prepared for the future? - exercise, weight gain, weight loss, diet, etc.
What symptoms do you need to be worried about?
Do you need to take extra precautions with anything? If you have low platelets, you may want to stop your boxing or full contact karate lessons. If you have low white counts, you might want to avoid crowds a little more. If you have low red blood counts, when should you get checked early to see if you need a transfusion, etc.

The biggest thing to keep in mind is that if you try to take it all in at once, it can be overwhelming. You are not alone. This disease is complex and has a different course in almost every individual. My personal example is that I went in for a routine checkup and found out that I only had 26k platelets and a slightly low red blood count. Once i met with the hematologist, I was told that I had MDS. That was in 2010. My disease did not change until November of 2013, and in February 2014 I had a transplant done. There have been a lot of changes in transplants in the last several years that have improved results over what you see on the internet, so I would not spend too much time focusing on outcomes that are printed and studied, as they all represent old datasets with old technologies, medications, and practices. And most importantly, they do not take into account your specific situation.

I know this is a long response. Hopefully it gets you started off in the right direction.

Dan

[bailie]

Meri, in addition to the very good advice from Neil and Dan, please be assured that all of us fully understand what it is like to get your diagnosis. It is worse than a "kick in the stomach". It really helps to stay ahead of the disease in the learning process. For me, the more I learned .. the better I could mentally handle this situation.

[John K]

Hi Meri -- The AAMDS website (aamds.org) has a lot of excellent pre-recorded MDS webinars, presented by various doctors. I highly recommend these as a way to get more educated about the disease and treatments.

John

[Meri T.]

Thank you Baile, Neil, Dan and John for your advice. I have written them all down in note form, prepared for my next appointment.

While waiting for the next appointment, I have tried translating on my own the BMB/BMA results. Really appreciate some help here, I don't understand half of these terms, even with google:

(3) Slightly hypocellular bone marrow
(4) Myeloblasts seen as 5.6%, from small to slightly big, by nucleous net (?)contains nucleolus.
Dysplasia seen in degranulation etc., neutrophil chromatin blocked.
(5) Erythroid series
Dysplasia seen in non nuclear shaped, multiple nuclei, karyolysis etc.
Fission image 1.0% and slightly outstanding
(6) Lymphoid series
slightly decreasing
(7) Megakaryocyte
decreasing
small shaped megakaryocyte seen
(8) Others
macrophage not outstanding but a few hemophagocytes can be seen.

Diagnose: MDS, RAEB1

Translation is my own, so there might be some unintelligible
phrases. Really need help with the meanings.Thank you.

Another point is that I have this list of like:
Myeloid series
promyelocyte 1.6
myelocytes 15.8
metamyelocyte 9.4
........
basophil 0.2
Then the total M series 62.8

And then the Erythroid series
pro erythroid 0.0
....
Total E series 25.4

Then the lympas....
and finally M/E 2.47

Neil cleared the meaning of M/E for me, which took a lot of my mind. Besides deciphering the lab results, where can I get the list for the Normal range of M series and E series...? Or should I just accept that my M/E is normal, so stop worrying about the details in the list?

Please help.
Meri