Myelofibrosis*

You are correct, everyone is different. 16 year ago a routine physical showed that my platelets were sky high. I was diagnosed with ET. and they started me on treatment with Anagrelide. That brought the platelets down, but it also brought everything else down too. So, I was switched to Hydroxyurea. The decline slowed but things didn't come back. A Bone marrow biopsy showed MF and MDS. Things kept dropping and Procrit was added. That helped, and I stayed with that for a while. It finally stopped working and I was switched to Aranesp. That did a pretty good job so I stayed with it. After a good while things were again dropping and Reblozyl was added. Once again things picked up. My goal was to maintain hb at 10 or above. That was a touch and go thing. I spent a good while between 9-10. But, once again things started dropping, biopsy showed a decline, and I was not able to keep hb above 8. I started getting blood transfusions. At first one unit would keep me above 8 for a few weeks but as time went on it was necessary to get them every couple weeks to stay above 8. My spleen was greatly enlarged and they were getting me ready for radiation to shrink it. A couple weeks before the radiation, the oncologist decided to try Vonjo. Within a very short time my pain from the spleen stopped and it started shrinking. It became easier to maintain a hb of 8+. Again, after some time blood transfusions became more frequent and I started infusions of Dacogen. They told me it would take me downhill and they were correct. It made me feel really bad and it drove my numbers down even lower. I got to the point that I needed blood every 1-2 weeks. I was on Dacogen for a year! It finally reached the point where my numbers were so low that they had to take me off of it. WBC was down to about nothing, my hb hit a low of 6.1 and I was basically on my way out. BUT, very soon after stopping the Dacogen my numbers started moving up! My CBC showed improvement week after week. It's now been about 6 months since I had a blood transfusion, and my numbers continue to rise. I no longer qualify for either Aranesp or Reblozyl. I still take Vonjo. My hb is in the 13 range and still moving up! My wbc, rbc and platelets are just about normal and I feel better and have more energy than I can remember. I don't know how long all of this will last but I'm enjoying it to the max. I was out of options when they stopped treatment, and I credit God for help. If it returns there is now a new drug available for me to try. I'll hope and pray it is not needed, but it's nice to know that there is more untried treatment available. I am 76 years old. If things stay like they are now I'll die of Old Age before it gets me. I say: Keep the Faith and never give up!

I agree that there are many unknowns about MF, even despite all the advances in research lately regarding MPN's, the prevailing knowledge varies greatly. I saw an orthopedic Dr last week for an ankle sprain, and he had to look up myleofibrosis... he had no clue. And yes, it is interesting to get to look at different experiences and points of view. They say that each MF patient is different. For sure !
I had ET for 17 years had become resistant to hydroxyurea, was on interferon injections for the past 7 1/2 years, and upon being diagnosed that my ET has transitioned to MF am told that I am already at an advanced stage with a prognosis of maybe 8-12 months left - unless this disease transitions further to AML which is very likely, and means a certain shortened end. So why would one commenter question so ardently that one patient has a five year prognosis and suggest a second opinion just because their mother had MF for 30 years ? We are all different and here under different circumstances. I have been waiting for my "urgent" stem cell transplant to be scheduled for over 4 months and the clock is ticking, louder and louder. Finally have a third "approved" consultation at Mayo for Dec 01, 2023. All this delay because insurance bureaucrats know better than Drs. So we keep tackling issues in front of us, do what we can to feel as good as we can to face the next day. As another commenter said, only God knows. Bless you all and may you have favor with all you have to endure.

Thanks for taking the time to reply. You know, I just noted that within a few hours two different person told me, you look good and was just going from one doctor to the other. Yes, we thrive on miracles, even the ones we are not aware of.
Appreciate note about the Spleen. I see why my hematologist keeps checking and saying...your spleen is OK. Best

I didn't change from the Procrit until my HGB started dropping. As for other treatments, I have MDS, which is certainly related to the MF, and my Kidney function is low. I believe these are somewhat common is situations like mine. The side effects have become a necessary part of life for me. For the most part I have learned to deal with them. Most of the Chemo drugs have kept me with a constant case of Diareha. There are various drugs that can help you deal with that. The Dacogen infustions were for 5 days straight, every 28 days. There is no doubt that it made me feel poorly, and it certainly lowered my White blood cell count to the point that I had to be exreamely careful about being around anyone that was sick. Infections of one kind or another was a major concern. The treatment also lowered my Platelets and HGB. So why did I take the infusions.... because they also killed cancer cells in the Bone Marrow. At the end of the week's treatment I vertually always needed Blood transfusion to bring my HGB back up. The boost from the new blood would hold me until i could produce some of my own new "Good" cells. After about a year, the Dacogen infusions had reached a point that they didn't seem to be giving me any improvement. When I recently put the Dacogen on hold, my White cells showed imporovement, and my HGB seems to be holding above 8. One of the major reasons for taking Dacogen was to become less dependent upon blood transfusions to survive. At this point it looks like it might have accomplished that, even thought the counts are still very low, they seem to have stabilized, at least for the time being. It's too early to really tell. The Vonjo has the usual Chemo sides effects, but using it gave almost immediate results. I had already been mapped for Radiation to shrink my Spleen when I started the Vonjo. Within weeks it shrunk my spleen negating the need to have it radiated or removed. No doubt that having the spleen is a good thing. I don't know if you are aware, but it helps pick up the slack of blood poduction when the Bone Marrow falls short. IMO, THAT is the main reason that I have survived MF as long as I have. As for the stem cell solution, I was certainly up to give it a try but all of my Doctors gave me the same feedback.... the said that I was too old, and was very likely to not survive the preparation for stem cell treatiment.... they have to Radiate you heavily to kill all the current bone marrow then give you the stem cells and start all over again. As for miracles.... heck, every day is a miracle and i am thankful for most of them. If possible, stay as cheerful as possible, make yourself look as good as possible and continue with your life as best you can. One thing that I know for sure is that contact with other people is good medicine. It helps you keep up a good attitude. If you look bad, constantly whine and carry on around others they would prefer to just stay away. So don't run folks off. If they ask how you are doing, give them a short honest answer that isn't too negative then move on and ask them how their garden is coming along.

Thanks for mentioning Procrit. That's where I am at, and my HGB is not moving. We are talking about changing, but to what. I am not entertaining the stem cell solution. The information about the new drug is appreciated.
Since you have been through this for so long, what are your side effects. Do you have to be treated for anything else? Before the bone marrow problem I had Sjogren's so stopped methotrexate when I realized that it was the bone marrow culprit. Believing for miracles, however.

Looking and reading these posts seems to me that there are many unknowns about MF.

This site is great to get different experiences and views,

I am a practical man and it seems to me that there is too much guesswork,

My mom lived with it for almost 30 years so I am not sure why your doc says only five year. I might look or a second opinion.

I used to use Procrit to stimulate blood production. After a time it stopped giving me the needed results so we moved to Aranesp. I also get Reblozyl injections. About a year ago they added Dacogen infusions. For the past coupe of years I have needed Blood transfusions pretty often so as to keep my HGB above 8. The Dacogen treatments have reached the point that the side effects outway the benefits, so I just stopped the Dacogen. The good news is that the Dacogen did help my marrow to start producing at least some more good blood cells, and has cut down on the frequency of required Blood Transfussions. The new drug, Momelotinib, is supposed to give the same Cancer fighting effect without all the negative side effects of killing good cells too. I don't think it is a "Cure", but it could be the closest thing yet if it performs like hoped, and like some of the Trial results showed. Being free from the need to get Blood transfussion is a big deal at this point in my journey with MF. The new drug should be approved by Sept 16 this year. Let's all keep our fingers crossed. In the mean time... stay on the Sunny Side.

Wow, I am glad I kept checking till I saw all these reports on mylefibrosis. I was just diagnosed last year after a dry bone marrow biopsy and since then I bhave been having weekly injections of Ptocrit but my readings go up and down from 8.8 to 9.2. I am still active at my age and just got a second opinion from another hematologist about having a stem cell implant even though in my 70s. Glad to learn that you can live for so long with it, and about the new drug coming out, which I have to investigate.
Will follow this thread of shared information. Thanks. We live by faith.

My mom had myelofibrosis and lived with it for over 30 years. So it can be done! Hang in there