I was recently diagnosed with CLL. My hematologist/oncologist ran the standard tests and this is some of the info I see:
No Jak2 17 mutation detected, No 9 mutation detected, No 12 mutation detected, No 10 mutation detected, No 14/17 Mutation detected
A negative FISH for BCR-ABLI fusion.
2 weeks ago my WBC were 18,000 and my ALC were 12,000. My IgM was 362 but most of the other blood work were normal. I see a specialist at the end of the month but trying to make heads and tails of these numbers. My doctor said it was a good prognosis.
If there are any seasoned CLL veterans here to explain the mutations I would appreciate it.
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Adante
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I'm glad that you have arranged a specialist visit, because the tests you mentioned in your second and third sentences aren't standard tests for CLL, but other blood cancers. From what you've shared of your ALC and IgM and most of the other tests being normal, it would seem that you are in the early stages of CLL.
As you live in the USA, you are eligible for a free video consult with one of the US's top CLL specialists through the CLL Society. So if you aren't satisfied after your specialist meeting at the end of this month, check out cllsociety.org/programs-and...
By all means share what you learn from your specialist meeting.
That makes more sense. About 10% of CLL cases are hereditary (familial) and blood cancer cases in blood relatives don't need to be CLL, but can be another blood cancer.
Keep a copy of all your test results. They'll come in useful in the future. You've paid for them and you should be given them on request.
There are a least a couple of hundred different blood cancers. Blood cancer will show up as a large monoclonal population of blood cells. Because you have a high lymphocyte count, which contains B, T and NK cells, your doctor or specialist knows to order a test to check if there is a monoclonal population of lymphocytes and which type. A CLL diagnosis is done by a immunophenotype flow cytometry test. It basically uses protein CD markers on white blood cells to 'fingerprint' the cell. If you find one that reports the presence or absence of CD5, CD19, CD20, CD38 etc, then share that here. CD38 negative is a good prognostic marker.
In countries where there is universal health care, (most countries), some tests are only done just before treatment, because they can change over time. In the USA, you can get much more testing done on diagnosis and it's worth getting prognostic testing done so that you can better plan your life. Are you going to fall in the category of ~30% that never need treatment, or are you likely to need treatment soon and perhaps every few years of so? In the USA, that can help with planning changes to your health insurance cover.
It's common to have a FISH (Fluorescent In Situ Hybridization) test done on diagnosis. This reports whether you have any common genetic deletions/additions, with 17p del the most concerning one. FISH results can change (generally worsen) over time, particularly after treatment. Based on your FISH test result, it may be worth doing further genetic testing.
The most important test to have is the IGHV mutation status test. Being mutated (that's not a mistake) correlates with a long time to first treatment and long remissions from treatment. The 30% who never need treatment largely fall in this group. IGHV mutation status is very unlikely to change over time.
There are many more tests possible, but the more useful ones are:-
In your regular CBC/CBE blood tests, track your haemoglobin (anaemia), platelets (bleeding risk) and neutrophils (infection risk) along with your lymphocyte count. (If the lymphocyte doubling time once it is over 30, is under 6 months, it's a trigger to check if you may need treatment.) If you also have the metabolic panel done, the LDH result provides an indication of how active your CLL is.
Perhaps every year or so, have your IgA, IgG and IgM checked. You may already have all these as you reported your IgM result. These are your antibodies and lower levels indicate you are at greater risk of infection and may eventually need IgG infusions to boost your immunity.
B2M is another worthwhile prognostic marker test that should be checked every year or so.
It's very important to always keep in mind that CLL is a chronic, i.e. slow changing disease. Don't get spooked at unusual results, but monitor the trend over time. There are spreadsheet templates available if you'd like to do this and learn more about how to live well with CLL.
Hi Neil would you elaborate or refer me to more information regarding LDH can tell us how active our CLL is? I just saw my specialist and my LDH was very high but he didn’t seem concerned and thought it could be genetic since my weight, diet and activity are very good. My ALC was 4.12. Thanks.
Lactate dehydrogenase is an enzyme that is present in almost all body tissues. Conditions that can cause increased LDH in the blood may include liver disease, anemia, heart attack, bone fractures, muscle trauma, cancers, and infections such as encephalitis, meningitis, encephalitis, and HIV. LDH is also a non-specific marker of tissue turnover, which is a normal metabolic process. Many cancers cause a general increase in LDH levels or an increase in one of its isozymes. Thus it can be a non-specific tumor marker not useful in identifying the type of cancer. Because LDH is non-specific and routine isozyme measurement is usually unavailable in clinical laboratories, LDH measurements provide incomplete information, and alternate assays such as CK for muscle, ALT for liver, troponin for heart diseases, etc. are needed.
Additionally, LDH activity is affected by hemolysis of the blood sample. Since red blood cells (RBCs) contain their own LDH protein, hemolysis causes an artifactual increase leading to false-positive high results. Besides, any cellular necrosis can result in increased serum concentration, and its ubiquitous distribution throughout tissues confers a severe handicap to its wider clinical utility as a biomarker.
In my experience, it has been poor blood taking technique or poor handling and processing that have caused my occasional high levels. So it's important not to be too concerned if you have a higher than expected result, particularly if you feel well. A very high LDH, a few times higher than your baseline, can indicate Richter's Transformation, but the increase doesn't always happen.
I am not an expert like Dr. Neil, but as a clinical biochemist I can tell you LDH is an abbreviation for Lactate Dehydrogenase. LDH is found in many tissues, such as kidney, liver, etc. Elevated LDH in your blood means that there is probably some leakage coming from a tissue. LDH tests are ordered when there it is suspected that there is a tissue inflammation, thus causing the leakage. It is not directly related to CLL but is a secondary impact. Other chemistry tests that may prove informative are creatinine, ALT, BUN. These are chemistry tests, not hematology tests.
Welcome Adante! You made a wise choice to join this forum. Feel free to keep asking great questions, this forum has a ton of smart folks (like AussieNeil) to provide answers.
As for your initial question (a good one) I agree with AussieNeil (and your doc) that you are in the early stage of CLL (your key ALC count is low , your feeling good etc… all good news) n your doc saying you have a good prognosis that too is good news! It’s a beatable cancer.
Focus on living life as best you can!
That’s my one advice Adante that I got at your CLL stage from this forum n it’s been the single best feedback I have ever received.
What does one do in terms of planning for health insurance if they are likely or unlikely to need treatment soon? Does this mean an HMO in the U.S. or maybe some supplemental insurance to Medicare? Or with a national health insurance in the U.K. does it mean private insurance if one can afford it? This has been mentioned in some of these discussions and I am wondering if one can plan like this or does it vary quite a bit with the individual?
Also, I was recently diagnosed and tried to understand all the numbers etc and then just went to a specialist with many years experience. She cleared everything up and explained clearly. Seeing a specialist is really the best thing to do.
I am in the US, on Medicare Disability, and I chose a PPO plan that includes drug coverage. I don't want an HMO in case I want to do a clinical trial out of my region, or see a certain specialist (not just for CLL, but for any need to see a specialist). There aren't major, well known cancer or medical centers in any HMO networks offered in my area. Some folks living near major medical centers/teaching institutions might have HMO options that will allow them to see these specialists. So it's pretty state-specific IMO.
If you don't have a plan that pays for your drugs, please consider one. Since many of the Obamacare laws got repealed, insurance companies can now put exclusions for pre-existing conditions (I think 6 months is the max for Medicare, but I am not sure) let alone not pay for many meds. I think with the new Medicare drug cap starting in,what, 2025? this won't be as big of a problem on the drug side but until then better to be prepared just in case. My neighbor with CLL has been stable for years, until he suddenly wasn't. And I mean, over a 2 week period destabilized.
Farther to AussieNeil's information on Lactate Dehydrogenase, my doctor tests me for LDH every time I have a scheduled check up by H/O. Mine happens to be every 3 months or less because my CLL is so aggressive. When I made my post "Good News Train". I talked about the symptoms of large cell lymphoma being rapid CLL progression like my trend of ALC doubling in 3 months and bulky lymph nodes. The other factor I did not mention was a rapid rise in LDH readings. The fairly slow increase in LDH was one of the factors which indicated to doctors that I may not have large cell lymphoma or Richter's Transformation. My concern with the possible large cell lymphoma diagnoses was not just the possibility of taking RCHOP treatment, but I was nearing treatment for CLL as well. Doing treatment with RCHOP would not allow me to be treated for CLL at same time. As my CLL is so aggressive that I might succumb to CLL before I could get through RCHOP. Blessings.
LDH normal range is between 120 to 250 U/L but this information can be monitored for a number of reasons by your doctor. In my case it was monitored due to rapid increase in ALC climb without leveling off. Your doctor can explain its use, which is very broad.
Some of us have symptoms when our LDH is rising as the cancer is growing. It's an inexpensive test that is easy to add onto the CBC and other things your doc is monitoring. But it's non-specific, you could fall down a flight of stairs or do hard exercise, or the lab person can accidentally the tube, and LDH can rise. It's something to be aware of but don't panic as it fluctuates.
And FWIW, all labs will fluctuate somewhat. It's more the overall trends your doc will be looking at, unless a critical threshold like a sudden severe drop in platelets or hemoglobin or rise in something else, your docs will be watching. Generally, labwork plus your symptoms and your previous history, all need to be assessed, before deciding the significance of a single lab value.
CLLsociiety.org has a spreadsheet template you can download, fill in your values as you get tested, and see for yourself how things are trending. This can be helpful as you see for yourself how things go up, then down, then up again, down, stay the same awhile, down again, etc. etc.
We have to try to avoid the syndrome where learning about the various possibilities behind abnormal test results has us thinking we ourselves have a problem! "Dr. Google" often has dramatic and alarming posts at the top of searches. As you get more knowledgable about this disease, you will learn to look only at trusted medical based websites, not some news article (which are often inaccurate) where a writer pounces on a single sentence of something, and tries to make a sensational story about it. Taking it out of context, or exaggerating if not plain wrong. Also look for the most up-to-date information on these medical websites, sometimes the older stuff floats to the top just because it's been around longer and has more "hits". Newer stuff obviously hasn't been accessed as frequently! I was recently looking up Trisomy 12 and the newer information was near the bottom of my search.
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