Quote:
Originally Posted by slip up 2
PattiDean.....so very sorry you are facing another hurdle.....when my husband's spleen became enlarged with the myelofibrosis....we did radiation and it did shrink the spleen and he was more comfortable...it was done 3X per week....as you know this is not a unique diagnosis along with MDS.....there is a test for the JAK2 Gene as well as a new drug JAKAFI...am not sure if it is used when there is a combination of the 2 diseases....
Also Patti....even some that do have family, they can cause more stress than comfort....
Kate
|
Thank you Kate. We have only known about the myelofibrosis since Monday. For now Dean's spleen seems to be fine. Dean's oncologist wants him to go to Moffitt for a consultation, since Dean's doctor says he is not sure where to go from here. We are still waiting to hear from Moffitt, they are suppose to call to schedule an appointment, but nothing yet.
Dean has labs this afternoon, and we are going to say something to the nurse when we are at the office. Waiting is so hard. We do know that the oncologist was going to have Dean tested for the gene, I am not sure if that will be today when they draw blood. He didn't tell us how they test for the gene, only that Dean was going to be tested.
Do you or anyone else know if it is common for an MDS patient to also get myelofibrosis.
Thank you Kate!
Hugs, love, faith, hope and prayers, Patti