Hi there,
When I was seeing my specialist at Vanderbilt, he was checking my Erythropoietin and LDH every 2-3 months. My local Heme/Onc doctor never orders anything but a CBC. I have been off HU since March 11 because it was making me feel horrible and I was supposed to start Besremi which was denied by insurance. So, I’m only having phlebotomies and taking aspirin.
Any input would be appreciated!
Thank you!
Kim
It depends on where you are in the diagnostic cycle. Initially certainly. After that, it would depend on how you are presenting currently and how your MPN presents historically. Any change in trend might provoke a recheck, particularly of LDH. Some docs watch LDH more regularly, others do not. Otherwise, I expect the answer is every one in a while.
Thanks, Hunter. I had messaged my local Dr and she had her nurse call me to ask why I wanted those two labs done. I told her that I had them done at Vanderbilt every 2-3 months but I would leave it up to her. My LDH had continued to rise over the 6 months and I am curious to know where it is, now.
That is in fact a valid reason to repeat LDH. Steadily increasing LDH needs to be explained. It can happen for a number of reasons. Hope you get answers soon.
Thank you!
I had low EPO and high LDH at Dx. On HU I got one more EPO and it was ok. LDH also improved. Did you also see benefits in either number from HU? If so and you're off it, getting rechecked makes sense for that reason also.
My MPN Specialist includes LDH in every blood test (which has been monthly as we try to get to a stable medicine level) and EPO probably about every 2-3 months. He recently included ESR 1 Hour (which he had never done before). In our discussions he has intimated that he would probably continue to monitor these regularly at 3 month intervals.
I'm not a doc, but I consider LDH to be a very important indicator of disease aggressiveness because on all the MPN groups I've monitored for years it has become clear to me that in cases where interferon has been able to lower an MPN patient's LDH into the normal range (under about 220) then those patients tend to continue to enjoy a state of relative disease stability for many years to decades to come.
ET & PV patients not on interferon tend to have LDH's of around 220-500 which continue to rise over time and skyrocket when they progress to post PV or post ET Myelofibrosis.
I have 2 questions! How did you monitor for years LDH when you are not a doctor? Are you a nurse ?
Second: why LDH continues to rise over time on ET and PV patients ? It happens always this way? It is a sign of progression this slow rising ( not the skyrocket thing!)?
I told my doctor I wanted LDH monitored every 2 months because I learned from being a member of various Facebook MPN groups that high and rising LDH indicates aggressive and progressing disease and low and stable LDH indicates unaggressive disease that is not progressing.
So your doctor confirmed your observations?
I have PV and 6 years ago my LDH dropped from 280 down to the 120-180 range about 9 months after starting Pegasys interferon and has stayed down. My itching and night sweats are long gone too so I feel essentially disease free. But I still take 90 mcg of Pegasys once a week to maintain the disease in a suppressed state.
You have important info on LDH vs prognosis. There is this report that relates LDH and ET prognosis:
pubmed.ncbi.nlm.nih.gov/282...
<<LDH level carries an independent prognostic value for survival in ET>>
But you are seeing that "reducing" LDH via INF can improve prognosis. Are there other published reports? It would be neat to see. Even your observation of this in MPN discussions is notable here.
This is my LDH plot. HU reduced it almost to in range, but no recent data. My provider has 256 as top of range.
You bring up a compelling reason to get this data. LDH could be worth tracking as a separate endpoint for INF, or HU, therapy.
Thank you for your reply. My LDH in December was 486 and started around 230 in October. It hasn’t been checked since.
My local hem/onc dr just responded and said I don’t need to have my LDH or erythropoietin ever checked, again. That isn’t something that is done once but is not needed, again! Plus she never followed up on my message to get Pegasys from 2 weeks ago when I told her that my insurance denied it! I am so sick and tired of this! Gah!!!
Sounds to me like it is time to look for a new hematologist. I have read that LDH can be an indicator of progression. They check mine at least every 6 months. I have had EPO checked 3 times in 4 years. I don't know what the reason to check it would be after a PV diagnosis is made, just saying I don't know. Pegasys is not FDA approved for PV, Besremi is, your insurance co needs to be educated. Looks like you will have to do that if your hematologist is unwilling or unable to do that for you. Can't blame you for being tired of all this. Best to you in getting the meds you need and dealing with hematologists.
I called my specialist at Vanderbilt and am going to see him on June 1. His nurse completely agrees that I need my LDH checked. Thanks everyone for your input. I really appreciate you all!
Kim
How often we are told ," but you look so well, how can you be sick ?"
And so we have the answer......
Why do we have mutations?
How soon should HU for ET work?
why do we have plastic around our fruit and veg!!!
