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.

Howdy... just a update on this old post. After using Vonjo for a long time it stopped working for me. So about 10 months back I started the new Drug Ojjaara. It kicked in very quickly and took my CBC to a new high for me. I've spent the past 10+ months living a virtually normal OLD MANs life. Normal being that at least for now I have the regular Old Age things to deal with. No more Blood transfusions or injections were needed the past 10 months. However, a couple weeks ago my CBC dropped just a little, nothing huge. I received an injection of Ryblozol and things immediately jumped back up. I'm hopping that it will keep working for a long time. At this point in time I've already tried everything else so there is no place to go except back to Chemo and Blood Transfusions. I'll cross the bridge if and when I come to it. Right now I've got to get down to the Senior Center for my Exercise class, then back home so I can get my travel trailer ready for another trip! My advice is to keep as active as you can. Don't push yourself, but don't sit around all day either. Find a fitness program that you can do, and DO IT!

Hey @snakebite. What a great Ojjaara update! Thank you for taking the time to post this! Anything that can help with the anemia caused by MF is a game changer. Not having to require blood transfusions or chemo is a win/win! I’m so glad you’re having such good success with the drug.

I LOVE your attitude…it’s exemplary and impactful! You’re my kind of people. ☺️

I should ask though, have you experienced any side effects from the new medication?

It's very difficult to nail down side effects. Most of the oral meds I've taken over the years have given me various levels of, gulp, Diarrhea. That has increased a bit with the Ojjaara. Another thing that has increased since I started Ojjaara has been the Neuropathy in my lower legs and feet. I can't say for sure what caused it, but during the past 10 months it has increased. A couple of weeks back I started taking Gabapentin and though it is early to give a good report, it "seems" to be giving me some relief. Other than that I have not noticed anything in particular. I must add, this drug is VERY costly... I mean VERY costly. I am on the Medicare Drug program as my Primary, and have my BCBS Fed Employees as my Secondary. Without these plans I would have become a Gardner a long time ago. (i.e. pushing up Dasies)

Wondering what your dosage of Ojjaara is - how many mg and how many doses a day. Also, did you have any neuropathy before starting Ojjaara. Thank you for responding.

200mg. I had neuropathy before, but it was not very bad.... It increased over time with the Ojjaara, and finally became very bad. The Gabapentin seems to be helping. I'm only in the first stage of it, and they plan to up the dose soon.... however, I might hold off on that if I can get by on what I am now taking. Fact is... my bowel issue have increased since I started it, and that is a real PIA!

Good to know. And, thanks for sharing, I think 🤔!