Quote:
Originally Posted by DanL
Patti,
It is nice to see Dean's numbers rebound.
The JAK2 mutation is not really considered good or bad, especially in the presence of already identified MDS. If the JAK2 mutation were present, it may confirm Myelofibrosis. As Birgitta noted, many MDS patients have marrow fibrosis (scarring), including myself, and it is basically the result of your marrow having to work really hard to keep up, and may have to do with an overproduction of bad platelets (ironically).
If Dean had the JAK2 mutation, he may have been eligible to take one of the newer myelofibrosis drugs like Ruxotlinib, which helps with MF and has some effectiveness in reducing spleen size for myelofibrosis. I don't think it has been tested too much in overlap syndromes where the line between MF and MDS is blurred. These drugs can really do a number on platelets is some of the concern.
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Thank you so much Dan for a very easy to understand explanation of Myelofibrosis and MDS.
We have an appointment at Moffitt in Tampa on Tuesday, anxious to find out what they will tell us. We will be seeing Dr. Lancet. Not sure why Dean's oncologist in Clearwater suggested we go there. We are hoping there are still options left for Dean.
On Monday, before our appointment with Moffitt, Dean will receive the final results of his BMB, the chromosome report. Is there anything we should be asking his doctor about the BMB or things we should be concerned about with the results.
Dean's platelets are low, although better than last week, but his poor arms look like I beat him, so many dark bruises everywhere. Today he is extremely tired and having trouble breathing, he is sitting his in recliner. He doesn't even want to eat, keeps telling me he doesn't have an appetite, but he is drinking two Ensures a day.
Thank you again Dan! A few years ago Dean and I stayed in Estes Park, Colorado, and then drove down to Colorado Springs to do some sightseeing in the area. What a beautiful state.
Hugs, love, faith, hope and prayers.......Patti