Newbie - Myelofibrosis

[RichieB]

Hi. Fresh diagnosis, and totally new to the game. Trying to get over the mass confusion of what I'm doing, as MF seems to have several names, and is closely associated with other conditions(?) Not medically inclined in the least, and the terminology is overwhelming. Slowly putting some pieces together, from which I may be able to ask more intelligent questions, and have a better understanding of my situation. This might be the place to accomplish some of that. So where would be the best place to hang out, or start a discussion? Thanks for helping me get started.

[triumphe64]

Originally Posted by RichieB

Hi. Fresh diagnosis, and totally new to the game. Trying to get over the mass confusion of what I'm doing, as MF seems to have several names, and is closely associated with other conditions(?) Not medically inclined in the least, and the terminology is overwhelming. Slowly putting some pieces together, from which I may be able to ask more intelligent questions, and have a better understanding of my situation. This might be the place to accomplish some of that. So where would be the best place to hang out, or start a discussion? Thanks for helping me get started.

Not much discussion on here about myelofibrosis. The lady I know had a bone marrow transplant. She went to another hospital for the aftercare and was told there is treatment for it.

Here is a good place to start. It shows who is doing research and writing journal papers. At this point, I assume you are going to a good hematologist who has lots of experience in treating this condition.


http://clinicaltrials.gov/ct2/result...=myelofibrosis

[MaryS]

Hi Richie,
What specific questions do you have? My father has MDS with primary Myleofibrosis overlap. Jak 2 positive. My father was just dx this Oct. His myleofibrosis is in the early stages, so they are not treating it right now. They are focusing more on the MDS right now.
MD Anderson is doing clinical trials for MDS and Myleofibrosis. Do a google on MD Anderson MDS/MPN primary myleofibrosis and you can get some good information. Do you have any chromosomal anomalies like the Jak 2 mutation?
How are your blood counts, do you have spleen enlargement? I can help you look up information. It is a lot to understand and I am still learning too. I hope this helps you.

Sincerely,
Mary

[RichieB]

Thanks. My weak brain is gaining wisdom, I was unaware of so many specific things and teminology associated with MF, and how to understand it all for a specific patient. Able to ask a few better questions, I want to re-consult with my local health care team and hope they can clarify everything up to my current status. I have seen 2 specialists confirming MF via the BMB. I feel confident with both, currently 'accepting' the diagnosis, and both seem to be on the same track for treatment. I think their approach would be matching any other hospital/recommendations at this time.
Think I'm Primary MF. Nothing showing to indicate otherwise. Toss in 'intermediate'? Red, hemoglobin, and platelets low, not excessive, but enough to be Anemic. (Anemia symtoms now obvious.) Enlarged spleen. Will be starting Jakafi any day now. Frequent lab work for CBC on tap to monitor results. I'd like to confirm if I can do various tests at either doctor (for convenience, less travel), and would they work together on the case? That's the best I can explain at the moment. No, have not yet talked to anyone directly with MF. We rare people must be hiding. Thanks.

[triumphe64]

If you are on Facebook there are two private support groups. One has 754 members.

Type in the name in the very top search line, and the names will appear.

[RichieB]

Hi again. Started the MF medication, so in a holding pattern right now until the next lab work. No side effects. Then check results, and re-evaluate the condition(s) to see what future routes may be available/best to pursue. Trying to maintain confidence that the current DR. has the knowledge and ability to provide adequate diagnosis and treatment. Have a nice list of questions as my own understanding of MF slowly increases. Lots of complicated stuff still beyond my comprehension. Neglected to add in that I also have Bladder Cancer, which has no connection to MF. Unfortunately, MF has created a condition which forced me to discontinue current treatment for the bladder. Crap. Will be looking for a work-around for that, or if an alternative treatment is possible?