mds after aml????

[tracy]

Hi–You guys are so helpful, I hope you can give me some input regarding my dad’s convoluted situation.

He is 66 yrs old & in excellent shape for his age–very active & healthy. He was diagnosed w/ mds in Feb 06. He was being treated w/ transfusions as needed until mid- March when we went to visit MDS center of excellence in Indy. At that time, he was diagnosed w/ AML & dr indicated that it looked like the mds diagnosis was actually wrong & that this was a “de novo” AML. He was put into a clinical trial in Indy & underwent standard induction therapy plus another drug (Zosusquedor) to enhance the chemo.

He tolerated the chemo extremely well–virtually no side effects & came home from hospital about 6 weeks ago. Altho feeling well, his blood counts have remained low. On Monday, he saw dr in Indy who gave us the bad news that chemo did not work & that AML is still there. He referred us back to dr at home (lou, Ky) for a standard reinduction therapy–this time w/ higher doses of chemo–but w/ only a 30% chance of remission.

So, we visit local oncologist today & he tells us that it likely that my dad did have mds all along b4 progressing to AML. And if that is the case, then it is even less likey that standard chemo will be effective. He indicated that if mds progresses to AML, when leukemic cells are removed–the damaged marrow from mds remains—hence the low counts continue after treatment.
I am thoroughly confused & would appreciate any input from those of you who have gone thru treatment for AML. After achieving remission from AML–do your counts remain low due to MDS???

Also–does anyone have experience w/ Mylotarg or Decitabine–these are other drugs being discussed for treatment options?

Thanks for your help!!

Tracy

[lucym]

Hi Tracy,
My Mom progressed to AML from MDS in May 06, 5 weeks ago she was treated with 5 days of ARA-C and 1 dose of Mitoxantrone. Since she is showing blasts in her blood, on and off and her counts have not come back up WBC 1.3 today they have decided to try Mylotarg she got her first 2 hour dose today via IV, so far no side effects other than fever/chills (but she has had a fever for a while now) She is expected to get another does in 2 weeks. We were told we have about a 20% chance of getting into remission. As for the other drug do a search and you will see all the posts made about it, it has recently been FDA approved. Best of Luck.
Lucy

[Suzanne]

My docs have referenced MDS and AML as if they are two separate things with me. When they do a bone marrow test the tell me that they see no signs of either type of cell. I have one scheduled for tomorrow-just as a routine check up-let’s hope they still see no sign if either!

[Neil]

Hi tracy,
If you read thru the archives and find some info on MDS/AML relationships you will find quite a few patients who went from MDS to AML. They were treated for the AML and at some point the MDS resurfaced. Sometime fairly quickly sometimes a bit later. There are some out there who have beaten them both! The unknown factor is for how long? AML might be successfully treated. Think much depends upon what triggered the MDS and how quickly the patient responded.
There are so many variations of MDS it is very difficult to predict how one will respond over the long term.
Would glean all of the info possible from Suzanne. She has much to offer from her experiences/successes.

[tracy]

Thanks for your input…..

Suzanne—I just love your story–it really sounds like you have this beat—hope all went well w/ your bmb….

Lucy—All the best to you & your mom. I know how stressful it gets watching those counts….

Tracy

[Rackon]

Tracy – who was your oncologist in Indy?

We are in Indy (Avon) – dad was diagnosed with CMML in 2002. Being in the horse business, we travel to/thgrough Louisville 6-8 times a year and feel quite at home there.

I think confusing time-lines and differing diagnoses are the norm with this group of diseases! It is so different for each patient, and it is usually diagnosed quite late so the progression can be difficult to track. I would guess that your dad may have had MDS for some time without being aware of it.

Wishing you and your dad all the best.

[tracy]

Rackon—We saw Dr. Larry Cripe in Indy.
We are quickly learning that there is often more “art” than science in all of this….

Until we saw Dr. Cripe it seemed to us that he probably did have MDS for awhile unaware–but he seemed so sure that this was actually de novo AML & since he’s at a Center for Excellence we felt he was probably correct….

Thanks & I hope your dad is doing well…

[Author]

Posts