I know that high LDH is associated with progression to MF although could be lots of other reasons for a high LDH. However is it possible to have MF and not have a high LDH?
I’m wondering whether I should have another BMB (it’s been four years since the last one) but my LDH is low and bloods stable. Hence is there any point?
Hi Paul , reckon you've answered your own Q there my friend, , if it ain't broke don't fix it springs to mind. When I had MF I had an initial Bone Marrow Biopsy but had no follow up one for about 9 years prior to my SCT because I was relatively stable counts wise though a couple of progression indicators were spleen size, increased fatigue level and switching to Ruxolitinib.
Do you think you're more likely to transform to MF because if you're concerned a BMB would hopefully put your mind at rest providing it shows nothing up !
Chris
My docs collectively would most likely say "no" in the absence of signs of progression. It likely does not meet the medical necessity criteria. The peace of mind criteria are different. Having had a similar question myself as there was some evidence of progression, I opted to recheck the mutant allele burden and do a NGS panel to look at a range of non-driver mutations. I opted not to move forward with a BMB as the allele burden had only progressed by 1% in 1 year and no additional non-driver mutations were evident. This is an approach that works for me and is recommended by my care team. You will have to decide what will work best for you. The answer is not always the same for all of us. We each have our own goals, priorities and preferences that are drivers of treatment decisions.
All the best to you.
Thanks for the replies. It’s more idle curiosity than concern. I’m on Pegasys and having a great result - it’s reduced my JAK2 from 80% to 14% and LDH from 250 to 105. Hence looks good.
I was just wondering if anyone here had low LDH and MF or whether mutually exclusive. My understanding is that JAK2 declines as MF progresses so not a reliable indicator? eg I thought a high AB was a positive re STC risking criteria.
Great to hear your progress on PEG. That is amazing reduction. I plan to try and quit HU , and if Ropeg doesn't get approved this year I'll go for PEG. There is a post here, Long Term INF Results, that is very encouraging for keeping at it.
Hi Hunter, how do they check for the allele burden? What test or procedure do they use? Kerry
The test is called a JAK2 Mutant Allele Quantitative Analysis (or similar). It is also included on some panels like the Intelligen Myeloid NGS panel.
I’m post Et Mf and my first hematologist in 2008, never even tested my LDH levels. It wasn’t until I started to feel much worse and my numbers became very unstable, that I changed to an Mpn specialist, that I got tested for it. They were pretty high (I think around 700) and along with my other tests, like another bone marrow biopsy, she diagnosed me MF intermediate one.
It sounds like you’re doing pretty well and that you’re pretty stable. I would talk to your doctor again about it, but it seems like a BMB may not be necessary at this point.
All the best,
Cindy
I have been on Pegasys for 2.5 years. I have MF in the proliferative phase. My LDH has drifted down over time into the normal range. My allele burden seems to be drifting down as well but I don't have many data points. A biopsy would make sense if the results would affect therapy.
While unlikely, it is possible to have MF and not have high LDH. High LDH is listed as a “minor criterium” in diagnosis of MF, meaning it is not strictly required.
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