← Return to How did you make the final decision to begin HU protocol for ET?

Discussion
Comment receiving replies
@erikaerika

That is such encouraging news. Thank you! I did have a bone marrow biopsy & I do have the JAK2 mutation. Whats interesting is that its not yet being picked up in my blood alone, which is why they were having a hard time trying to figure out why my blood count had been high for the past 2 years. She said the mutation is only appearing in 2% of my cells; but she did also say that they don't have enough research to know what that means exactly. So course of action is still the same regardless of the percentage of the mutation. It's all still very confusing for me. I'm trying to make sense of all of this. I've tried to do research but it's still just causing anxiety. I don't know what the percentage is that this might then lead to leukemia or if your on the medication for a long period of time it increases the odds of that happening. Can I ask what a MPN specialist is? Would I have to go somewhere specifically to find someone?

Jump to this post


Replies to "That is such encouraging news. Thank you! I did have a bone marrow biopsy & I..."

I just typed in MPN specialists and it came up with a list by state.

I am also on a website healthunlocked.com that is based in United Kingdom with participants from around thr world. It is sponsored by MPN Voice. I have seen lists mentioned there including United States. Do you live near USA teaching hospitals?

Eileen

Erika,
I just went to MPN website and asked for MPN specialists. It took me to voicesofmpn.com. You can find a list there.

Eileen