Histopathology Bone Marrow--Chronic idiopathic myelofibrosis

[saalanc]

(continued) To be honest, there aren't a lot of good meds out there. The JAK2 inhibitors are encouraging, but the research indicates that it's not a single defect that causes this, so meds are not just a one shot deal (imho). If you are Ph+ for CML, you can pop some Gleevac and go on your way for about 5 years. Incyte wore out for me after 10 months. As for bone marrow transplants, most centers have about a 25% fatality rate; if you survive, the cure is about 50./50. Hope that helps. Alan

[onacoffeebreak]

hey....saalanc

How long have you had this? I myself started out with ET and was diagnosed MF after a recent bone marrow biposy.... Why do people have to get worse... as I have heard this from lots of onliners.... why isn't stem cell transplants preformed when a patient is not so bad off......

I am fine except for fatigue I get so tired.....

[saalanc]

As you know, the starting point of this disease is very confusing. I personally believe that there is no such thing as primary idiopathic mf. I think we all at least had some type of mpd if we look at our long term blood counts. sometimes pv causes platelets to go up too so we get labled et... other times it's rbc's or wbc's. i'm no doc, but i've done a lot of emperical research and it sure looks that way to me. more on the next reply.

[saalanc]

There are some new theories coming out about something called TET1 or TET2 that may work in conjunction in some cases of MF. It will be interesting to watch how the pharmaceutical companies respond to it. I don't know if I want to be a lab rat again :)

Alan

[NikeshaSmith]

My cousin has been diagnosed with Chronic Idiopathic Myelofibrosis and I want to reach out to others that may have this disease to network and/or add to any blogs out there, any suggestions to blogs or networking to learn more on clinical studies?

[onacoffeebreak]

I have the same thing as your cousin and have not found much out about it... I will keep you posted if I find anything and hopefully you can do the same for me....

Good luck!

[saalanc]

Hi Coffee,

I hope you're finding information and support you need. I hope you'll checkout he online listserves as well as mpd info already online. I would be happy to answer your questions as well.

We're in this together.

Alan

[pashmpa]

Thankyou SO MUCH for posting these videos

[Manontheearth]

benzene gasoline exposure causes this disease

[saalanc]

Actually, that is only one theory. The genetic mutation that occured in my case was JAK2. Theories are now that it can be from several different mutation points. There is no clear root cause of this and other MPD's. It may also be caused by radiation exposure. As the video says, it's ideopathic (of an unknown origin). Sometimes it's secondary to another MPD. If you would like a first person account, feel free to shoot me a note.

[onacoffeebreak]

I am confused... I was diagnosed by my oncologist as having myelofibrosis with leukoerythroblastosis and was then told to see a specialist and I am now waiting for an appointment....

What kind of treatment are you getting....?

Any feedback would be apprieciated

[saalanc]

I'm certainly not a doctor, but from what I do know is that leukoerythroblastosis is kind of a descriptor for the subset of symptoms this disease has (immature or large RBC's etc.). I just stopped the JAK2 trial because I wasn't getting good results any more. There's a new derivative of Revlimid in Phase 1 now. Other than that, I'm waiting to get worse and then have a stem cell transplant... MD Anderson has about 80% survival with 50-60% remission. Check out the online listserves.

[1IvoryLady]

My husband who is 65 has had myelofibrosis for nearly three years now. He has been taking Hydroxyurea (chemo tablets) 1000 mg a day together with Allopurinol. He also takes lots of naturopathic remedies, which he believes is helping him. His spleen is very tender and causes much discomfort (about 8 times bigger than normal). He feels tired all the time. You mentioned stem cell transplant - is there an age limit on this type of treatment? He's been told he is too old for bone marrow transplant?

[saalanc]

Hello Ivory,

I am told that the reduced intensity conditioning SCT's are available into the 70's. It is a serious commitment. There's about a 25% fatality rate in SCT's. You didn't say if he's infusion dependent. That is my marker for when I will consider it.

Some folks are getting some relief from Turmeric Extract with Black Pepper extract. Source Naturals makes one that also includes bromelian for inflamation.

I hope this helps.

Alan

[bbumpkin2004]

very informative-thanks

[Manontheearth]

benzene, gasoline, chemical exposure causes this horrible disease