Myeloid sores

[Barb M]

I was first diagnosed with MDS in 2013 after a gene sequencing as part of a bone marrow biopsy. I was on Vidaza from Jan 2014 thru mid 2015 with no significant improvement. I was accepted for the NIH Promacta clinical trial in August of 2015; was released Dec 2015 since I had no signs of my body utilizing the Promacta. Had Campath in Feb of 2016 and while it helped for a few months I reverted back to low HGB needing transfusions every 18 to 24 days; the Campath has kept me from having to get platelets.

This January i started having round spots come up on my skin which progressed into bumps/sores. The final (took 3tries) pathology report showed myeloid cells. The diagnosis then changed to my MDS is morphing into something else. Started a five day course of Vidaza last Monday.

The spots are now appearing all over my body. My joints have developed some spots around them and are painful. Just checking with this forum to find out if anyone else has experienced a myeloid morphing and what the outcome has been.

[Sharon]

I am a 77 year old female and going through the same thing, I have had 4 platelet transfusions, but it doesn't help. Biopsy on knee showed myeloid cells. Currently receiving Dacogen. Diagnosed AML January, 2016 transferred from MDS 5Q deletion for 12 years.

[Barb M]

How did they verify you were now AML?

[Sharon]

I was diagnosed by number of blasts in bone marrow biopsy. I have received three cycles Dacogen. Before that I had bruises. Now I have the sore lumps surrounded by dark black/blue bruising. Dermatologist biopsy confirmed myeloid cells. No treatment. Please post what you find.

[Barb M]

Sharon have you tried Arnicare gel for the bruising? My spots are going away so I'm hoping the Vidaza is working.

[Sharon]

Barb
Do you still have the sores? Have you received a diagnosis yet? Has your oncologist prescribed anything for them?

I still have them all over my legs after transferring to AML. I have received numerous transfusions of platelets and red cells. Platelets continue to stay 10 and under to 1.

[Barb M]

Sharon
I had the following cycles of Vidaza based on 28 day cycle:
Two treatments of five days
Two treatments of seven days

My sores came back in the 5 day treatment on day 4 or 5 of treatment.
When increased to 7 days the spots did not come back.

I then presented my case to go back to five days because my blood counts were horrible. Neutrophils were gone for three weeks. WBC went down to .5. They came back up above 1.0 after two weeks. Platelets are no longer being generated by my bone marrow; receiving weekly platelet transfusions.

Since I went to Vidaza 5 days, My hemoglobin has held coming up on 21 days.

The spots have come back and are mild compared to the first episodes. Did a second opinion at MDS center of excellence which was close to what we are doing now.