Hi Mike - Here is a link to a video prevention by Dr. Gale Roboz regarding MDS and treatment options - Its a couple of years old but not too much has changed. It is helpful in understanding MDS and various treatment options.
https://www.pathlms.com/aamdsif/cour...entations/8075
If you prefer to read - here is a link to the AA/MDS foundation website - they have a plethora of information:
http://www.aamds.org/patients/learn-about-your-disease
Will you have someone with you when you see the doctor? There can be a lot of information and it is helpful to have a second set of ears sometimes to process everything.
There are two different types of tests to think about - blood tests - which they draw from your arm - and a bone marrow biopsy (BMB) where they suck out marrow from your hip bone (aspirate). If you are going to a hospital, blood tests should come back fairly quickly - a small doctor's office may send them out - A Bone Marrow Biopsy takes more time to get results back - I'll start with blood tests...
There are many different blood tests - you will probably get a blood test called a Complete Blood Count - or CBC. This test provides information about what is going on with the three major components of your blood - red blood cells - they carry oxygen to other cells - White Blood Cells - they fight disease - and platelets - involved in clotting. Hemoglobin is a molecule in the red blood cells that carries oxygen to other cells - that is generally what Dr's focus on.
The most important numbers to look at are:
Red Blood Cells/Hemoglobin -
Hemoglobin (HgB) - below 8 you're pretty anemic and should probably consider transfusions - You also want to look at any trends - Here are some questions:
Does my HgB go up in response to Aranesp? How much?
Is it trending up, down or is it stable?
If its going up in response to Aranesp that's great - if its stable then maybe a transfusion would boost your counts and last for a while - Ideally you would get transfusions to keep you HgB up around 10 - this could require frequent transfusions or maybe not depending upon your disease - you'd need to see how long your counts stay up after a transfusion. I found its better to have regular smaller transfusions rather than waiting until my HgB dropped very low and I'd need multiple transfusions - the amount of blood I received was the same. You want to avoided getting dangerously low HgB.
When you get a transfusion you are getting red blood cells to boost your hemoglobin.
Platelets
You mentioned your platelets were around 50. Normal platelets should be 140 or higher - at 50 you need to be careful but they'll let you have surgery - below fifty they won't. If platelets are very low you risk excessive bleeding in response to injury - or if low enough even without a specific trauma. If you have very low platelets they can also be transfused, but generally they won't above 10 - and transfusions don't last very long. Drugs used to treat MDS such as Vidaza tend to lower counts before they begin to rise - if your platelets are very low, you may not be able to take such medication - some questions:
Are my platelets trending lower? Stable?
Are you considering a drug such as Vidaza, and if so, should we start sooner than later due to my platelet count?
White Blood Cells
White blood cells fight infection - the number to look at is Absolute Neutrophil Count (ANC) - a component of WBC's - this should be well above 1 - but look at the reference range for both ANC and WBC's and see where you are - are your counts normal? trending down?
Bone Marrow Biopsy (BMB)
A bone marrow biopsy is the definitive way to diagnose MDS - This test can take a week or more for results to come back. Important findings in the BMB include:
% of blasts - blasts are very immature abnormal cells - less than 5% blasts is good - greater than 10% is serious - at that point should probably consider treatments to bring the blasts down - Blasts over 20% is very serious. The BMB will also look at whether there are "dysplastic" cells - misshapen blood cells that characterize MDS. They also should do cytogenetic studies - these can take a while for results - these studies looks for mutations in the chromosomes or genes - Some mutations suggest a more serious disease requiring more aggressive treatment.
You should know
- when was my last BMB? What %blasts were there? Were there any cytogenetic abnormalities? If so, what do they mean in terms of treatment and prognosis?
When are you going to do another BMB?
Here are my questions:
Did you reach out to any transplant/MDS specialists in Birmingham?
Do you have someone to go with you to the doctor?
Is your doctor a hematologist/oncologist?
What report are you looking at?
If it would be helpful to talk on the phone (what a concept) I'd be happy to - just send me a private message (click on my name) and let me know the best way to contact you - it might be easier to talk about things so that you can ask questions as they arise.
All the best,
Paul