May 30, 2019 at 2:46 pm #46820
Anyone have any experience with LDH numbers related to prognosis? My first result was 381; two weeks later it was 683. Waiting for the third result now. I am guessing this is not the greatest news? I have recently been diagnosed with Myelofibrosis partly resulting from a long-ish history of thrombocythemia. Oncologist says my Risk Level is “High”.June 1, 2019 at 6:21 am #46828
Okay, well… Thanks anyway everyone.June 1, 2019 at 10:55 am #46829
I don’t want you to think that no one cares, but I am not at all familiar with LDH numbers. My husband has MDS high risk and has not had LDH tests so far. I think that normal range is 105-333. I checked and there is a forum for Myelofibrosis. (www.Myelofibrosis.com). I hope that this will help. Best wishes and prayers to you.June 1, 2019 at 12:59 pm #46830
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!June 2, 2019 at 3:42 pm #46831
I have seen that test also and my numbers were right about where yours are. I was a little freaked out when I looked it up but I then looked back from when I was 1st diagnosed with MDS 2 years ago and it was in the 700’s. Now Its around 635. If you google it you can find lots of information on reference ranges and causes. I am going to mention to my Dr. when I see him on Friday. I’ll let you know what he says.
BrendaJune 2, 2019 at 4:45 pm #46832
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?June 2, 2019 at 7:44 pm #46833
I believe it has something to do with the percentage of blasts. When I was diagnosed I had none. I will be having another BMB within the next couple of weeks. Hopefully there is no change. I have been pretty stable for 2 years. You have a great positive attitude and this disease has a mind of its own it seems and can change in a minute or can remain stable for awhile. The Dr I had before this one never checked LDH so it makes me wonder how accurate a marker it is since I have seen that others have never seen the test. Happy anniversary to you and your wife! Keep up the positive attitude! That is something that is difficult for me since I am only 57. But I do try and I feel great.
BrendaJune 2, 2019 at 8:11 pm #46834
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!June 2, 2019 at 9:22 pm #46836
I believe it should be on BMB report. Not the CBC.June 3, 2019 at 6:19 am #46837
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!June 3, 2019 at 8:02 am #46838
Bone Marrow Biopsy (BMB)June 3, 2019 at 8:12 am #46839
Steve, here is another useful website:
marrowforums.org Quite a bit of useful informationJune 3, 2019 at 8:54 am #46840
Brenda, thanks so much!!June 7, 2019 at 9:37 am #46852
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!June 7, 2019 at 11:03 am #46853
Hi Steve, I believe under 5% is the number they shoot for. So looks like you may be in good shape for now. That’s good news!
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