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Questions submitted by readers and answered by the CLL Society Medical Advisory Board
By Susan Leclair, PhD, CLS (NCA)
What is LY% in a blood test? Is there something you do to improve the value?
Answer from Dr. Koffman: To paraphrase from Dr. LeClair, %LY is the percentage of the total white count that are lymphocytes. As we have written about on the website, what you should follow is the trend of the absolute lymphocyte count, or ALC or LY ABS or #LY, not the percentage. Sadly, there is no consistency in how results are named on lab reports. A high lymphocyte count is the hallmark of CLL but is not an important marker for indicating when treatment is needed, unless it is doubling rapidly.
Can Hypercalcemia (20.3) affect a blood alcohol test?
Here is the answer from lab scientist, Dr. Susan Leclair.
It is really the alcohol that influences the calcium level rather than the reverse. High levels of cortisol are seen in people with alcoholism and can decrease bone formation and increase bone breakdown. Chronic alcohol consumption also increases parathyroid hormone, which leaches calcium from the bone. Also, excess alcohol kills osteoblasts, the bone-making cells.
My wife was just diagnosed with CLL. The blood test used to confirm (next will be a CT Scan) states the following that we are questioning:
Positive FISH result for deletion of ATM. In the Interpretation, states “deletion of ATM is associated with rapid disease progression in B-cell CLL.”
Also, the IGVH STATUS is “UNMUTATED” thus following states “CLL patients with UNMUTATED IGVH gene usually have more aggressive disease and shorter survival.”
Are we to interpret this to mean she has the severe case of CLL with a shorter lifespan?
Will the CLL PILL work or does she need immediate Chemotherapy?
What more can we offer you from the test to help you discern her status with CLL?
Please respond as quickly as possible, for we are very concerned. I hope you understand why? Thank you so much.
Here is the answer from lab scientist, Dr. Susan Leclair.
First – take a deep breath and then another. And another. The path you are your wife are on has been well laid out and is traveled by many others. You are not alone.
Next, yes, you are correct to feel overwhelmed and at sea. I think at time this is a time which is harder for the spouse than for the patient. Your instinct is to protect followed rapidly by a feeling of inadequacy. Acknowledge that and move on.
The language of medicine is probably totally new to you both so make it a habit to:
- write things down that you wish to ask her physician when you next meet. In the hustle and bustle of an appointment, there are things you forget and topics that you question after you have left. Be prepared.
- as the care giver, you take up the assignment of writing down/recording what the physician says so that you and your wife can review it as many times as you need. Many physician says that once you give a patient a diagnosis, they immediately go deaf. That is because you are trying to process too much in too short a time. Recordings allow you to take it slow and prepare those questions for the next time.
- say stop when her physician goes to fast or assumes you know something when you don’t. The rule that all physicians agree to is that they need to explain fully in language which the patient understands. If you don’t get something, ask for it to be re-explained.
There are a number of that which are performed to analyze the cells. Some of these tests test to see if there are markers/proteins/structures in the cell’s nucleus. This test is the FISH test. It is a method that looks for the chromosomes that make up the genes. Other tests will be genetic sequencing, that it, looking to the genetic code in these cells for the instructions rather than looking for the end product of the instructions.
Deletion of ATM means that there is damage to the construction of a protein. The more cells are damaged, the greater the chances of issues.
As the cell matures, it turns on and turns on genes as they are needed. Sometimes when a gene turns on, it changes its structure from the original form – that is – it mutates. IgVH that is mutated means that these cells have not progressed to the point where they needed to alter the structure to being activity.
There will be many more tests which will allow her physician to develop a fuller picture of her status.
One suggestion – there are physician across the world who have made CLL their main focus. It is worth it for you and your wife to see one of these specialists even if you never go back. they will give you a sense of what is happening now in the CLL “universe”. They simply know more and asking that person questions will help you a get a handle on this.
I would add that there is little role for CT scans in CLL diagnosis and echo the importance of a second opinion with a true CLL expert. We have a list (https://cllsociety.org/toolbox/cll-doctors/) on our website and we also offer a free online consult through our expert access program (https://cllsociety.org/cll-society-expert-access/), if you can’t see the specialist, but the best move is to get an expert on your team.
Finally remember that statistics predict for groups, not individuals and with the new CLL “pills”, the old predictions you quoted are not applicable and out of date. The prognosis is much better these days with the new medications.
I am 60 good health, received the news of CLL on January of this year, I am currently under treatment taking Venclexta. My question is how do I monitor my progress in learning how much bad cells have been kill in my lab work. I get blood drawn every other week to see my reds, whites numbers. looking for a reply thanks.
Here is the answer from Dr. Susan Leclair, our lab scientist.
This is a question that many people wish they could answer. The most sensitive tests are tests for the presence of the DNA of the malignant cells. It cannot tell you how many cells are killed; only a number of the abnormal DNA in a sample. This is an expensive test to perform and I suspect that your insurance company would not be interested in doing this.
Most tests concentrate on how many are still alive and to that point, the best test is the ALC or absolute lymphocyte count. By following the ALC, one can determine an approximate number of many malignant cells are active and how rapidly this is happening.
Susan Leclair, PhD, CLS (NCA) is Chancellor Projessor Emerita at the University of Massachusetts Dartmouth; Senior Scientist, at Forensic DNA Associates; and Moderator and Speaker, PatientPower.info – an electronic resource for patients and health care providers.