Long awaited Drug for myelofibrosis (MF) has been released

I just saw this post. My aunt had MF and developed AML 30 yrs ago. Now her niece (me) has MDS. I wish my aunt had access to this drug, but am happy people have it today. This drug gives me hope. Have you tried the drug?

Hello Janetien: No, I have not tried the new drug yet. The journey in my battle with MDS and MF has taken a lot of different avenues with twist and turns. I've been on a number of different drugs over the course of the last 16 years since I was first diagnosed. Most of the drugs were met with some limited success but in each case as time passed their effectiveness decreased. As newer drugs became available I would often end up giving them a try. About 18 mo back I was put on Vonjo and Dacogen. The Vonjo was to reduce the size of my spleen, and the Dacogen was to kill cancer cells in my Bone Marrow. The Dacogen's cancer killing power comes at a price, it also kills some good cells. It was a balancing act. Over time it became necessary to get Blood Transfusions as my blood counts dropped. When we reached a point that the white cells got too low, we stopped the Dacogen, but continued with the Vonjo. When we stopped the Dacogen my blood counts soared upward to a point that I had not seen in over 16 years. Obviously the Dacogen did it's job and I've spent the last several months with blood counts near that of a "Normal" person. (although my wife says that I've never been "Normal") During all this time I have continued to take Vonjo. As expected, my counts are starting to slowly decline, but they are still far better than before the Dacogen. The Dr says that at some point it may become necessary to again do the Dacogen treatments. When/if we reach that point we may first give the new drug a try. For now I'm enjoying having enough energy to "Leap Tall Buildings with a Single Bound", not bad for a 76 year old. We will see how long all of this last but I've had a good run at it and have never lost hope. As I've told some folks, God Loves Everyone, but he really Likes me.

I was diagnosed in July with MDS, but low Neutrophils counts and high blood cells volume indicate I have had this since 2020. I am encouraged by your longevity. I am not getting treatment yet since values are near normal. My wbc counts (all types) are rising from low to near normal which is weird. I hope it is an indication God loves me too 😃 Your wife knows you well! Did you ever consider a stem cell transplant? Overall, how has the quality of your life been with the treatments?

I was not a candidate for stem cell when first diagnosed because of acute Kidney failure. By the time it was stabilized, they said I was too old. Quality of life is a tough one to answer. It can be what you make it. To some folks a good book, a cup of tea and some biscuits/cookies, a fire, maybe the occasional visit with friends is a High Quality life. I had to work on that and learn to accept a much more docile life style when I was in the doldrums. My life has always been fast paced. I worked in the Air Traffic system for the FAA, I was a Volunteer Fire fighter, I played local softball for 25 years, I was a Volunteer EMT and I was a competitor in action shooting events with some national titles under my belt. I have always been an outdoorsman and highly athletic, and always out in the shop building something.... so.... learning to slow down was tough. I put the motorcycles out to pasture and slowed down on dragging my travel trailer around the US. It was made clear to me that pushing myself when I didn't have enough oxygen to supply my heart and large muscles could be the end of me. THERFORE.... I made a lifestyle change and learned to pace myself during the times I was "running on empty". If you get into the right frame of mind, and don't just sit and feel sorry for yourself, you can have a good quality of life even when things are stormy.