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Originally Posted by PattiDean
I forgot to add, I see all this information about your journey through this disease in your posts and it looks like a foreign language. When will I understand what I need to look at and what is important in the understanding of what my body is going through.
I remember my oncologist telling me about 17% blasts. I have been trying to read about them in my research and everything I read is telling me that is not good.
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Hey PattiDean!
The lingo is pretty confusing, but you'll get the hang of it after awhile; just don't be afraid to ask any of us -- or your doc -- what the heck we are talking about.
I think most folks pay attention to a few key things in both their CBC (Complete Blood Count) and BMB (Bone Marrow Biopsy), depending on their symptoms and the general profile of their disease. So it varies a bit from person to person
On the CBC, I'm always curious to see four things:
- Hemoglobin (HGB), because my doc uses it to decide when I need a transfusion. But some docs use Hematocrit (HCT) instead.
- Platelets (PLT), because mine have been low in the past.
- Absolute Neutrophil Count (ANC or NEUT#) - these are the white blood cells that fight off bacteria and fungus. I look at this instead of the White Blood Cell (WBC) number, because I had a treatment that suppressed my lymphocytes (ALC) which are the white blood cells that fight viruses. Since those are still suppressed, my overall WBC number is always low.
- Absolute Lymphocyte Count (LYMPH#). Since these were suppressed by my treatment, I'm always watching to see how they are doing.
These are the four I follow right now, and I actually made a spreadsheet to track and graph them, so I can look at progress over time. It's amazing how much you think you will remember but forget anyway.
On a Bone Marrow Biopsy, (BMB) there are tons of numbers, and confusing language. Again, what to look for depends somewhat on your disease profile, but I always look at:
Diagnosis - Usually the pathologist will render a verdict on what you actually have, like Refractory Anemia (RA), or Refractory Cytopenia with Multilineage Dysplasia (RCMD), or Refractory Anemia with Excess Blasts (RAEB). There are a couple of different classification systems for MDS, so some pathologists will use one and some will use another.
Cellularity - The pathologist will usually make some comment about cellularity -- whether you have more, less, or a normal amount of blood producing cells in your bone marrow. What's normal depends on age; as we get older, the blood-making cells in the marrow are replaced by fat (yep, you even get fat in your bone marrow!) Most MDS folks have hyper-cellular marrow, but some have hypo cellular marrow -- i.e. fewer blood-producing cells than expected. Sometimes, a different therapy will be suggested for these folks.
Dysplasia - This can be hard to find or understand, because it's always written in a bunch of terms derived from GReek, like "megakaryocytes" and "erythroid," but the information in this part of the report describes which of your three blood cell lines are messed up , and how they are messed up.
Cytogenetics - This is an analysis of your chromosomes to see if any are defective. They actually grow out the bone marrow cells and look at the chromosomes under a microscope. If you have messed up chromosomes (which is pretty common in MDS) sometimes the therapy your doc chooses will be based on which chromosomes are messed up.
FISH - This is not always done, but it's a fancier way of looking for messed up chromosomes and each test targets one particular chromosome. Usually, this will just be done for a few chromosomes that have implications for treatment in MDS.
Blasts - These immature white blood cells are very important in MDS diagnosis and in naming us worry about whether we are moving toward AML (Acute Myeloid Leukemia). You are right that 17% blasts is not good -- 20% is generally the threshold at which the diagnosis becomes AML. On the other had, you mentioned you have been diagnosed with RAEB-1. RAEB-1 is 5%-9% blasts, from 10% to 19% is generally called RAEB-2. So, you might want to confirm that with your doc.
Unfortunately, the experience that Beth describes rings true for anyone who has had a lot of these tests: they can be maddeningly contradictory from test to test and pathologist to pathologist. This is science, but it ain't rocket science. So it's best not to get too hung up on the results of any one test -- even one BMB. You have to kind of watch things over time.
There's tons more stuff on a BMB that can be important for some patients. Fortunately, I haven't had to learn about those yet.
I hope that helps. Once you get some reports in hand, we'll be happy to help you figure out what they mean.
Take care -- and Happy Independence Day!
Greg