MDS versus low blast/smoldering leukemia

[kmiller]

I went to Johns Hopkins yesterday for a consult, sent by my local hematologist/oncologist after BMB indicated likely RAEB with approx 10% blasts and trisomy 8. I was shocked when the Hopkins doctor (Dr. Jones, co-director of their transplant program) told me he thinks I actually have AML (low blast/"smoldering") and recommends I start standard tx for AML (induction chemotherapy) as soon as possible! My local doc has spoken with the Hopkins guy - and he is suggesting has suggested I take my BMB slides to see another local hematologist/oncologist to weigh in. I have an appt. on Monday.

What I've read so far online is that there is really a blurry line between MDS with excess blasts and AML. So far my red cell counts have not been much affected - mostly white cells (told my neutrophil count was 410 yesterday - down from 900 last week). I

Apparently AML can sometimes be cured with chemo and that if I choose that option it doesn't rule out transplant at some point in the future if I need it. So, its sounding like I may be starting chemo for AML in the near future. The guy from Hopkins would have had me admitted to their hospital as soon as possible, but they are about an hour and a half away. Considering doing it at a local hospital (Virginia Hospital Center or Inova Fairfax) for convenience and since it would be standard therapy.

Yikes. Does anyone else have any thoughts about or experience with this particular diagnostic distinction? They may take BMB on Monday to take another look (last one done 11/7). Thanks, Kelly

[Birgitta-A]

Hi Kelly,
Since many MDS patients get AML MDS sometimes is called preleukemia or smoldering AML. As far as I understand there is only one cure now for MDS and AMK – stem cell transplantation.

I think that all types of chemotherapy for both diseases can decrease WBC:s and platelets during the treatment but the counts will often increase between the treatments. Could they not give you Neupogen for low WBC:s ?

If I was you I should chose Hopkins - that is world famous - so I should have doctors that are among the very best. At the ASH Conference in Atlanta Dec 2007 the doctors from Hopkins presented 13 abstracts on MDS/AML.
Take care!
Kind regards
Birgitta
68 yo, Interm-1 MDS dx May 2006, transfusion dependent, Desferal 4 days every 5th week, Neupogen 2 injections/week, asymptomatic

[Steve P]

Hi Kelly,
Seems that you did not get the dx that you wanted to hear from JH. Sorry to hear about that. Think you should take all of the time you need and see as many docs as you need to be comfortable with what might be next. It really is up to you.
One thing to note - Gore has written and I actually questioned him about it that he regards AML as acute MDS. He said the lines are very fuzzy as to where one stops and the other begins. I would listen closely to these JH docs as Gore has been involved with MDS since the mid 90's and really has made it his life work. He said that when first involved that they hardly knew how to classify much of anything, didn't have the analytical tools to do so, and it was a "mess" in his words. They have come a long way. What they did know then was that AML didn't just appear overnight and that there was a process leading to it.
Good luck, stay positive, and if I can help let me know.
Steve

[kmiller]

Thanks for the replies. I saw another hematologist today (he runs the transplant program at Inova Fairfax hospital. He agrees with the Hopkins doctor that whatever we decide to call my marrow condition at this point in tiime, the best approach is to start treatment fairly soon. This would be induction chemotherapy for AML, a break, then either more chemotherapy or transplant at that point. He feels we should be working toward transplant so I, my sister and brother will be having our blood checked to see if one of them could be a good match.

I will have another BMB tomorrow to check on progression since last one (11/7). Unless blast percentage is considerably higher (like 50% or above; which would mean hospital right away), I will be starting treatment at Fairfax Hospital (about 20mins from my home) sometime after Christmas. I feel good about the decision to do the tx locally at this point, since I know several people (doctors, nurses) who work there and I think they would look out for me!

Thanks for your thoughts and support. Kelly

[Birgitta-A]

Hi Kelly,
Good luck with the BMB and chemotherapy! Please keep us informed about investigations and treatment.
Kind regards
Birgitta
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days every 5th week, Neupogen 2 injections/week