My typical quarterly checkup with my CLL doctor follows a certain routine - I have the blood draw and then, as soon as CBC results are available, I see the doctor or his nurse practitioner. And then, long after I've left the office, the other blood results are available, including LDH. So, in other words, I'm gone from the office in case I have a question. Same pattern yesterday.
However, I noticed yesterday that my LDH was high 258 vs 210 max and that, in fact, it's been high for the past three checks but not historically. FYI - five years on Ibrutinib and it's working great.
So I messaged the doctor and got a quick canned answer from one of his RN's saying don't worry. The number isn't that high and besides, we check a lot of things. Don't lose any sleep over it.
Well, I'm not going to lose any sleep but wanted to throw the question out - any opinions on this? I don't like it when any metric is running along for years in limits and then gets three data points in a row that are 10-15% out of limits. Thanks for any thoughts on this.
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hhk50
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Do you still have a primary care doc? If so, I'd probably book an annual appointment to discuss this issue (and whether you need a referral to a specialist) and send the past year's blood results by him/her in the meantime. Sometimes, not everything is CLL-caused, and having other docs check numbers out of range can be a good idea, just for your peace of mind. Especially if you think it could be something and your current CLL medical team does not.
And if it is CLL treatment caused, they still might be able to help mitigate the issue without you having to switch treatments.
I'm not medically trained, and hope that some here that have far more lab interpretation experience ( Jm954 JigFettler )will weigh in and correct me if I am wrong.
I believe that many of the electrolyte & liver / kidney function tests are used like a "check engine" dash light. And if there are no symptoms of common causes, and all the other results are normal, the medical team will keep an eye out for other values changing.
It is possible that your slightly high value is showing that your BTK treatment is working and the CLL cells are being killed on a daily basis. Mine was high while on ibrutinib /Imbruvica and when I started venetoclax / Venclexta until I reached full 400 mg dose and my ALC was low.
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If you switch to a Fixed Duration combination that includes Venetoclax. You may see your LDH go up further and your ALC / Lymph# go below normal for a few weeks.
Those are the kinds of things that it would be nice if the oncologist told the poster. You know, like "you might see you LDH go up while on this medicine", etc. Do docs think we don't look at our blood work?
Yes, in fact, I'm thinking that in the future I might ask them to schedule my bloods the day ahead so that I can look over all of them ahead of time. I only live 10 minutes from the medical center. I realize that they schedule the bloods and the review back-to-back for my convenience but I'd rather the extra day to let things simmer so I can ask intelligent questions.
When I got my new doc (my well-established, revered one retired), he saw me before results back but told me everything fine. Then when got results back, saw something concerning but could only go through nurse online asking about it and being told it's nothing, etc. So I try to make sure to see him only after for the same reasons.
Hhk50, to put your LDH results into perspective, in the German Study Group GAIA/CLL13 assessment of the role of complex karyotype in CLL in High karyotypic complexity is an independent prognostic factor in patients with CLL treated with venetoclax combinations; pubmed.ncbi.nlm.nih.gov/371... , they used an LDH cut-off value of 250 in their assessment. The median (range) for non-complex karyotype patients was 251.0 (95.8-1684) and for complex karyotype patients was 274.0 (118-1580). For those with non-complex karyotype, the split above and below 250 was roughly 50:50, for complex karyotype, it was 60:40.
Thanks, Neil. My LDH values have been rocking along below 200 for the past several years, and now they are up in the 250 range for my three readings this year. I was just trying to figure out if there was any significance in the trend change.
Are you exercising more? Are you bruising more? How are your other labs?LDH means "tissue/cell damage" but it could be any cell anywhere, not just CLL ones. You can get an isoenzyme test to try to narrow down the tissue being affected. Viral or other infection can affect it too.
Thanks. I’ve been wondering about that too. I did beat my body up a little bit before this recent test, and my fuzzy memory tells me that I had a sinus infection before the last one. You might have hit on it.
I think that I will print out the LDH trend line plot before my next visit with the CLL doc and wave it under his nose and ask him about the isoenzyme test.
LDH is a mystery to me as well. I’ve only had it measured twice as a recently diagnosed patient. But it’s been 220 and 224. But all my other numbers are normal, except for slight elevation of lymphocytes so far ( between 5-6k).
So how can LDH be high when I’m early stages of 0? Guess it could be other tissue damage? Could Muscle strains do it?
We don't really think of our blood tests as a snapshot in time but just like glucose, the other numbers are not static over the course of a month, day or week. If you are currently losing weight your cholesterol numbers will likely be elevated, if you fast for a longer time before the draw, the number will also change... have you changed some little habit in your day?
LDH is a very nonspecific marker with multiple sources. Your elevation is slight. Follow the trend. LDH can be "fractionated" to better determine the source if needed.
Whenever going over my labs they always say LDH is a little elevated but nothing to worry about. That it’s just an indicator of possible inflammation.
)They changed systems so earlier labs aren’t in the same system to be able to compare/access, but also had some higher numbers before the one green result, so it’s not that the lower results were where I started.)
Mine is high as well. I only got to see a nurse at my check-up and not a consultant. I asked about the high reading and she said not to worry about it as there were lots of reasons why and it wasn’t a concern. Like you, I wanted more information but none was offered.
In the context of chronic lymphocytic leukaemia (CLL), the lactate dehydrogenase (LDH) level is often used as a prognostic marker to assess the aggressiveness of the disease and to help guide treatment decisions. Elevated LDH levels typically indicate a higher tumor burden, increased cellular turnover, or tissue damage, which may suggest a more advanced or aggressive form of CLL.
1. Disease Staging: Alongside other diagnostic tests and clinical assessments, LDH levels can contribute to the staging of CLL. Higher levels may signify more advanced disease, potentially affecting treatment options.
2. Monitoring Response: LDH levels may be monitored periodically during treatment to gauge how well the treatment is working. A decreasing LDH level could suggest a favourable response to therapy, whereas an increasing level might indicate treatment failure or disease progression.
3. Assessing Prognosis: Elevated LDH levels are often associated with a poorer prognosis, and thus may affect considerations for more aggressive treatment modalities.
4. Guiding Treatment Changes: If LDH levels rise significantly during treatment, it could be a trigger for healthcare providers to reassess the current treatment plan, and possibly switch to a different therapy.
It’s crucial to interpret LDH levels in conjunction with other diagnostic and clinical information. The LDH test is not CLL-specific and can be elevated for many reasons, including other medical conditions and even vigorous exercise. Therefore, it is usually part of a broader diagnostic and monitoring strategy, and not a standalone criterion for CLL treatment decisions.
Thanks. I suppose that the best thing to do is to simply keep an eye on the LDH, since all other indicators are stable and, thank God, I've been in remission for the past couple of years.
I do my blood tests one to two hour before my H/O appointment which gives my H/O time to review and discuss any blood test results. Sometimes the tests require more lab time, I will have bloods drawn 2-3 days before my appointment giving H/O time to review. I have had LDH in the 250s and H/O not alarmed. I can many times review my blood results on hospital portal before I see H/O. Higher LDH can be from a number of things other than CLL.
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