What can I expect?

[Mblackmon]

I was under the assumption that when a CBC was done there would be a "blast" count. I see that is not the case. I have the results from the BMB and I will look that up. My test are done at the cancer center in Montgomery Alabama. The CBC results are ready in 1 hour or less. My WBC is 1.3. My RBC is 2.4. My HGB is 7.6. That's all the numbers I know to look at. Like I said, I go Thursday for another shot and consultation. My wife usually accompanies me when I go. Does thus disease make you extremely sleepy? I have a hard time staying awake.
The doc has not suggested any other type treatment to date. I will ask him some of the questions I have gathered on this site.
He did tell me I would not be a candidate for a stem cell transplant. Age?

Like I said, I have resisted a blood transfusion to date. Just too many questions to think about. The reason I have resisted is this. I look at it as the beginning of the end. Just my mind set here.

[Sally C]

Hi Mblackmon,
My husband had over 125 blood/platelet transfusions - without he certainly wouldn't still be with us. He has had no residual damage from any of them.
After several failed treatments, he was given Eltrombopag (Promacta) at NIH and has been in remission for 5 years now. Please don't give up.
God Bless,
Sally

[PaulS]

I understand how you feel about transfusions - but with HgB at 7.something they will make you feel better - some on this board have gone many years just getting transfusions - and yes, MDS and very low HgB will make you tired - transfusions should help.

Glad you wife is going with you.

As I and others have said - age alone shouldn't disqualify you for a transplant - neither should some history of heart disease - although both make the transplant more complicated and risky. The have mini-transplants that are easier for older people and/or people with other health problems to tolerate. A transplant specialist would really be the person to talk to about that - a hematologist/oncologist should refer to someone - if not - then maybe start at the transplant center nearby.

Good luck with you next visit.

[bailie]

To be candid, I had two BMB within a week after getting numbers that were higher than yours. If I were to have let it go another two months I would have had trouble staying alive. Not meaning to be an alarmist, but you really need to pay close attention at this point. My MDS was moving very quickly. There are so many different kinds of MDS it is important to know exactly your situation. There are many forms that need immediate attention.

[PaulS]

Bailie is correct in pointing out the importance of getting a Bone Marrow Biopsy (BMB) - In the poster's case (Mike) we don't know when his previous BMB was and what the results are - for his sake and for those following this line I thought it might be helpful to clarify.

The BMB will provide the information necessary to derive a diagnosis and formulate a treatment plan. You can't do those things just from blood tests. Blood tests can identify a problem - but can't necessarily tell you what the problem is - or how to best treat it. Once you have a diagnosis, blood tests can help tell you if things are getting worse, staying stable, or responding to treatment - but you still need periodic BMB's to make sure there are no changes in the marrow that won't show up just from a blood test.

There are different types of MDS - with any MDS there is a risk it transforms to acute myeloid leukemia (AML) - which can be lethal. With MDS, your bone marrow is not making sufficient healthy blood cells - they are oddly shaped (dysplastic) and don't function well. One or multiple blood lines can be impacted (red, white and/or platelets). If one or multiple blood lines get very low, that in itself can be very bad - anemia can lead to heart problem, low WBC's can lead to infections, and low platelets can lead to bleeding.

There can also be cytogenetic abnormalities associated with MDS - some of these predict a poor outcome - others may predict a better response to certain drug treatments.

A best case scenario might be only one blood line is slightly low with normal cytogenetics. In such an instance, the doctor will likely watch and see what happens. A fortunate patient can live many years this way. This is how I started. My diagnosis was Refractory Anemia (low RBC) with multi-lineal dysplasia - all of my blood lines were badly shaped but only one was low. I was considered lower risk. Had only one blood line been dysplastic I would have been even lower risk. As my hemoglobin went down, I began to have more fatigue - and eventually they tried EPO, which helps the body make more RBC's. In my case it didn't work. Over time my platelets started dropping too - and we decided to try Vidaza - during this period I had BMB's starting every six months, then every three as my counts dropped. I had no blasts and normal cytogenetics - still good. Finally I started needing transfusions - I didn't respond to Vidaza and my platelets were still dropping - at that point we started talking more about transplant - as I had become a professional patient - given my age and active life style- going for transfusions every couple of weeks was not a good option. Finally, my BMB showed 8% blasts - up from zero (although they were probably less) and a troublesome cytogenetic abnormality - marrow had changed for the worse and I was declining - definitely time for transplant.

This all took about three years. If I had responded to EPO and/or Vidaza I may still not have had a transplant- had my numbers not dropped, I might have been OK for many years without any treatment - If I were in my late 60' or 70's and not especially active, maybe just getting occasional transfusions or a clinical trial would have been a reasonable choice.

If my initial biopsy had shown excess blasts, or if I had developed MDS due to previous cancer treatments - I would have been at much higher risk of developing AML and would likely have moved to transplant sooner or right away. MDS has many faces - thats why its a syndrome - all MDS is characterized by misshapen blood cells due to a bone marrow disorder - from there it can take many different forms and call for different treatments.

Its important to understand what kind of MDS one has, and what the risk of transforming to AML is - and then to develop a treatment plan. In low risk MDS, a transplant is not necessarily the best option - in high risk it may be - depending on other considerations such as age and other health issues.

In Mike's case - he needs to now (1) what the trend in his blood counts are; (2) what the BMBs have shown and what they show now - and what the trend is - are there increasing blasts - what %? Cytogenetic abnormalities? What kind? (3) is the EPO treatment working? (4) Where do you go from here - transfusion? Vidaza? Clinical trial? Transplant?

Mike, there is a lot of information to understand and digest - and you should be able to trust your hematologist/oncologist - with either knowing what is best to do - or referring to or consulting with someone who does. But there is not necessarily a "right" answer - everyone's MDS is different - as are individual's circumstances, tolerance for risk and pain.

Hope this helps -again, best wishes, Mike.
Paul

[riccd2001]

I'm not trying to hijack or misdirect this thread, but will try to add to it with my heart-felt thought.

When I received my low-risk MDS DX, I was lost and in dispair. Back in 2007 I wondered if I would live long enough to see my grandchildren. This Site offered the hope I needed to find the way to do so.

To Paul and many other members on this Site, let me simply say "Thank You" for giving me your wisdom and advice over many years! May you continue to do so for others who feel lost.

[Mblackmon]

Found my blast count...2%. Is that good or bad?

[PaulS]

2% is very good! Do you know what the cytogenetic studies showed? How long ago was the biopsy?

[PaulS]

Hi Ric - this site has been a great source of information and comfort for me too - How are you doing now?
paul

[riccd2001]

Hi Paul - Dealing with AML really is tougher than low-risk MDS, but I'm doing OK so far. With good consistent healthcare QOL is ok. I hope that Mblackmon is now encouraged to fight this nasty disorder and chooses what is best for him\her.