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Great. Thanks. I had to get a copy of my bone marrow biopsy and found 3% there. Boy, there was a LOT of data there! Page after page.
BTW Debbie, where do blast results show up on the CBC with Differential?
Debbie, I am no expert but I have been forced to educate myself hurriedly since being diagnosed with myelofibrosis two months ago. Couple of things I have learned: Blasts are problematic if over 2% in the bloodstream, and one test I found to be very helpful is the test for Lactate Dehydrogenase (LDH) which is referred to in the literature as a Tumor Marker. If you are diagnosed with a cancer, an LDH test can assess the rate at which cells are being destroyed by cancerous cells. I am High Risk and given my own most recent pair of LDH results – 381 and 689, respectively – I am guessing I have about a year to go. Apparently if that should climb over 1,000, then a year would be considerably too optimistic.
Best of luck to you!
I apologize to everyone. I feel like I am hogging this board. I don’t do a lot of online stuff so don’t have a good feel for what might be acceptable. I’m 74 and still think it’s called “FacePlace”. Brenda, if you wish, feel free to contact me by email at email@example.com. Otherwise, I’ll try to curb my curiosity and “need” to respond.
First of all great for you! And I don’t blame you for the anxiety. One of the few things I have managed to learn about this disease in just a few weeks is the utterly capricious nature of it. Whatever you are doing right, keep it up! And blessings to you and yours. Oh, and my Oncologist now only needs to see me once a month although I still need to do Blood Panels with other tests every other week. Just watching the numbers, I guess.
Brenda, got a copy of my BMB yesterday and it is showing 4% blasts. Just can’t remember if that is good, bad or indifferent. Doctor did agree that we are talking probably about some number of months Chronic and then some number of weeks Acute. I have had to convince him that I need to be clear-eyed about this and I think he got that message. I don’t need any happy stories or false hope. Thanks again!
I am a rookie at all this, having been diagnosed with myelofibrosis five weeks ago, but I am at high risk. I lost almost forty pounds in the last seven weeks. Never hungry. Could only eat a few bites once a day. What sparked the diagnosis was a severely enlarged spleen and liver. The spleen can cause all sorts of issues but what you notice most of all is a lack of appetite. You just feel full all the time. My oncologist/hematologist prescribed Jakafi. Initially 10mg but almost immediately after that the highest 25mg dose twice a day. Thank goodness for insurance because the retail on Jakafi is right at $18,000.00. Per month. I only pay a $50.00 copay. Don’t know if this helps anyone but best of luck to you all.
Brenda, thanks so much!!
Sorry. Don’t know what a BMB report is. I am a rookie at this. It doesn’t seem to show up on my Patient Portal report stuff. I’ll look it up and see if I can find it. Thanks!
Brenda, I think I read that, that the acute phase depended on the blast percentage. Thanks for the reminder. Not sure where to look on the CBC report to get a blast percentage, but I think so far my percentage is very low or non-existent so far. I have read from other posters that there can be considerable confusion among medical professionals regarding prognosis – especially during the onset of the acute phase. Many report they were told months only to find out it was weeks or maybe even days until they get to the end of the line. I’ll have to remember that about blasts, though. Thanks again!
Thanks, Brenda. I will see my guy Thursday and will have access to one or possibly even two more LDH test results. I was only recently diagnosed (mid-April) coming out of controlling very high platelet numbers for ten years or so. I looked up more on LDH in a broader search and learned two things: High numbers generally mean faster progression of the cancer, and two, anything basically 1,000 or higher means you are in pretty deep doo-doo as far as survival length of time is concerned. For me, at my age (74), there is no real intervention to slow this up. Honestly, my best guess is twelve months to AML, then maybe four or six weeks after that before I croak. I am content, though, and have had a wonderful life. My father died at 42 so much of my life has been frosting for me. My wife and I celebrated our 50th wedding anniversary yesterday so life has been full and good for me. Better than I had any right to expect. I am sort of curious about what constitutes the move from chronic too acute. Any thoughts on that?
No worries and thanks for your post. Lactate dehydrogenase (LDH) is a tumor marker and mine seems sky-high to me. I sort of assumed this test was a standard test for folks with myelofibrosis in particular and marrow cancer issues in general. Again – no worries at all!
Okay, well… Thanks anyway everyone.