Today, we got another packet of information regarding a different clinical trial that Dave should qualify for. The medication is called Pegasys and is a weekly injection that I hear has great benefits. But of course, there are frightening side effects that we have to consider. One has to do with vision loss and that really freaks Dave out since he only has vision in one eye! Both trials will require him to come back to Arizona a couple times per month. . . But we feel it will be worth it! We will come home tomorrow, weigh our options, and wait for the dr to call us with results of the tests that were run this week. Dr. Mesa is not 100% convinced that Dave has Essential Thrombocythemia, which I was never fully convinced either because so many of the symptoms overlap between that, Polycythemia Vera (PV), and Mylofibrosis(MF). Regardless, it IS one of those 3, which is the Myloproliferative Neoplasm that I have always talked about. They are all 3 (along with other blood cancers) considered to be a chronic leukemia. Dr. Mesa described it as him being somewhere on the spectrum of MPN, with ET being the best case and MF being the worst. MF is when your bone marrow hardens/turns into scar tissue if I remember right, and I think a bone marrow transplant would be necessary for survival (of course if it progressed rapidly). One more apt tomorrow morning and then we will be headed home, waiting to hear from the dr. Once he sees the bone marrow biopsy results, he will have a better understanding of how aggressively we need to treat this. He said the BMB that was done in Tulsa did not have much marrow collected at all, so thats why he wanted another sample. The nurse today said they took 11 viles of marrow yesterday! Along with the 2 little pieces of actual pelvic bone! Ouch!! No wonder he is walking around like an old man! Thank you for continued positive vibes and prayers, for Dave to feel well and tolerate whatever medicine we decide on, for everything to flow smoothly once he gets involved with the trial, for patience as we wait for BMB results, safe travels home, etc. etc. etc.!!! :)
Posted on: Wed, 20 Aug 2014 21:15:07 +0000
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