Connect
← Return to New to Hydrea for ET
Discussion
Comment receiving replies
I have been very happy to read online the positive responses to taking HU instead of the negative and down right scary ones. I was diagnosed with ET with a Jak2 V617F mutation and as I posted in a previous post I am seeing a Hem/Onc at UCLA on the 3rd. I felt I wanted another opinion. I really wanted to know if I’m a bleeder, or a clotter and how do they determine which way it can go. Also, when is a bone marrow test done? The first doctor just said you have Jak2 mutation and this is how we start treatment. If that’s the case then fine that’s what I will do, but more explanation would have been great.
Replies to "I have been very happy to read online the positive responses to taking HU instead of..."
Hi lyd0218,
Please share what you find out about if they can tell if you are a bleeder or a clotter and how it how that is determined. That is a great question! Also, I was just like you and wanted to make sure if I what I have so I asked for a bone marrow biopsy but my O/H said it wasn’t necessary as “you have ET, what else could it be”. That made me not so sure of her knowledge about MPNs. You are wise to go to UCLA for more expert help. I know they have know about JAK2 mutation longer than mine, CALR. For me the bone marrow biopsy is as very easy and painless but I know others did not have that experience.
Connect
Just saying, "You have a JAK2 V617F is not enough! In my opinion and many oncologists' opinions, diagnosing to be sure you have ET can only be 100% accurate if you have the BMB! It can tell a hematologist/oncologist much more than blood tests alone. I would definitely ask to have one done when you see the UCLA! Bleeding can be caused by several things -- very high platelet count, which crowds out other blood cells, very low platelets, etc. This is why you need a BMB to see exactly what else is going on and get a "baseline" of all your important cell counts.
I am so glad you'll be seeing a specialist at UCLA soon! PLEASE have them order a CT guided BMB for you while you are there!