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Blood Cancers & Disorders | Last Active: Oct 16 9:36am | Replies (142)
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All the responses I have gotten have been very helpful. This diag. is new for Becky and we're just trying to navigate the system and do everything we possibly can to make sure we have the best care possible. We are very happy with our current doc in several ways. I was just concerned that perhaps the diag was a bit too quick but your response goes a long way in reassuring us. We will be talking to the doc in a few weeks and we'll be going over some of these questions I have had but the more info we get, the better we feel that we are in the right place.
Thank you nohrt!
Replies to "All the responses I have gotten have been very helpful. This diag. is new for Becky..."
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Sounds like Becky has been through quite a lot. I am looking at mitral valve repair, but am holding off until I can be sure insurance will pay for the transcath procedure instead of open heart surgery.
In dealing with a variety of co-morbidities along with ET, I've learned that a) most docs have never heard of ET, and b) the better you can get the platelets under control, the easier it is to deal with all the other stuff.
I would ask the doc if he thinks a bone marrow would be useful. And you can ask if other blood cancers have been ruled out. My guess is that the blood tests that detected the JAK2 included tests also ruled out leukemia or other cancers.
The good news is that hematologists are WAY more up on ET and other MPNs than they were 10 years ago. So diagnoses can be made better and faster.
Doctors still need to do better helping patients understand the disease.