Myelofibrosis*

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

When I was first diagnosed, Dr. Greenburg at Stanford MC. told me that five years was the average survival. The single biggest factor here is that treatment for MF has made huge advancements in the past few years, and there are some REALLY promising things coming just around the corner. Nobody other than God knows how long any of us have in this world. So, I just take it one day at a time, and consider each day a victory. Everyone is going die, and there isn't any doctor that knows when that will happen. In the mean time do your best to take care of yourself.

I have MF diagnosed 12 months ago,
Goctoor said I only had 5 years to live.
Is that correct?
Your post said 15 years! Wow, what an effort.
Do I take the 5 years prognosis seriously?
I feel fine.

Welcome to Connect, @snakebite It’s so important for us to keep a positive countenance especially when facing a long term condition. You’ve certainly got a great attitude of not just sitting around and crying, but making sure to get up every morning, to take care of yourself, to look your best and to find something to be grateful for daily! Those are powerful words and actions to keep you motivated. Thank you for sharing this reminder to those who might be wavering.

You’ve faced quite a journey with myelofibrosis with so many different treatments over the last 15 years. Was a stem cell treatment ever discussed as an option for you?
You must feel like a slug by the time your hemoglobin gets below 8. I’ve had that happen and the energy level just plummets!

I surely hope this newest medication, momelotinib continues on its fast-track approval for you and other MF patients. You piqued my interest so I did a little reading about it. Looks promising and holds hope for so many suffering the effects of myelofibrosis when other treatments have failed.

Thank you for sharing your experience and gracious attitude. You never know how many people you may be giving that all important nudge to. ☺️

What were you grateful for today?