Hi my husband has just been diagnosed CLL. So as in a previous post of mine, very naive in loads of things and we have lots to learn.
very confused with all the abbreviations used. Is there a glossary of them someone can point me to?
many thanks, we are finding this site so informative
On the RHS there are links to related posts, moderators and below that pinned posts, which has a "see all >" link. At the bottom of that pinned posts list there is a "see more posts", it's well down that list.
Sadly the NHS love acronyms and they don’t seem to grasp that patients don’t understand them. Sadly Google is probably the quickest, or does your husband have a clinical nurse specialist ( CNS ) they are a good first port of call for information. Or someone here will be able to answer.
I am doing my bit as a patient information volunteer for McMillan and I am trying to reduce acronyms.
Colette
Oooo, well done Colette. So pleased you have the energy. Take care
Thank you. I am on several hospital patient groups but this is the one I feel I can make a difference, and unlike a clinician I try to read the information as a nervous and inexperienced patient. I still have enough energy to read pamphlets and minutes, well in the mornings 🤞
Well done, thanks
Hi Artycrafter. Try our website here: cllsupport.org.uk/what-does...
It's pretty comprehensive, and you may also find the information on the rest of the website helpful.
The glossary on the CLL Society website has definitions for lots of acronyms. I actually printed it and used it numerous times when I was new to cll.
These dumbed down posts might help, there’s a steep learning curve with this cll stuff:
Hi Artycrafter
Here are some abbreviations There are a lot of them.
MEDICAL ABREVIATIONS
Afib - An irregular heartbeat that occurs when the electrical signals in the atria (the two upper chambers of the heart) fire rapidly at the same time. If not treated, atrial fibrillation can lead to serious problems, such as blood clots, stroke, and heart failure. It is more common in older adults.
ALC - Alternate level of care - for patients no longer needing to be in hospital. Also absolute lymphocytic count - High is bad, low is good.
ALSO for CLL - Absolute Lymphocyte Count
BMI - Body Mass Index (BMI) is a person’s weight in kilograms (or pounds) divided by the square of height in meters (or feet). A high BMI can indicate high body fatness. BMI screens for weight categories that may lead to health problems, but it does not diagnose the body fatness or health of an individual.
What is BMI used for?
BTK inhibitor therapy is effective in patients with CLL resistant to venetoclax
BTKi - therapy achieves durable disease control for patients with CLL after progression on venetoclax.
CART-T- White blood cells are removed from the patient and altered to kill cancer cells, after being cultured to produce millions of cells. Has proven effective where other treatments failed.
CKD - chronic kidney disease
eGFR - estimated glomerular filtration rate
FCR - a combination of cancer drugs used to treat chronic lymphocytic leukaemia
Fludarabine, Cyclophssphamide and Rituximab
FISH - Fluorescence in si.tu hybridization is a test that “maps” the genetic material in a person's cells. It is a test that looks for gene changes in cells. Genes are made of DNA. They control everything the cell does, including when it grows and reproduces. FISH tests look for specific genes or parts of genes.
IgA - Immunoglobulin A (IgA) is an antibody blood protein that's part of your immune system. Your body makes IgA and other type of antibodies to help fight off sickness.
IgG - Immunoglobulin G (IgG) is a type of antibody. Representing approximately 75% of serum antibodies in humans, IgG is the most common type of antibody found in blood circulation.[gG molecules are created and released by plasma B cells. Each IgG antibody has two paratopes.
IgM - Immunoglobulin M (IgM): Found mainly in blood and lymph fluid, this is the first antibody the body makes when it fights a new infection.
IVIG - immune globulin intravenous – a product made up of antibodies that can be given intravenously. Antibodies are proteins that your body makes to help you fight infections
LDH - Lactate dehydrogenase: An enzyme that catalyzes the conversion of lactate to pyruvate. This is an important step in energy production in cells. Many different types of cells in the body contain this enzyme. Some of the organs relatively rich in LDH are the heart, kidney, liver, and muscle.
LFT – Lateral Flow Test – A rapid home test for Covid 19 Could also be Liver Function Test.
LLS - The Leukemia & Lymphoma Society® is a global leader in the fight against cancer. The mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma,
MRD - Minimal residual disease is a term used to describe the small number of cancer cells in the body after cancer treatment. An MRD positive test result means that disease was still detected after treatment. An MRD negative result means that no disease was detected after treatment.
The MRD tests are used to find if there are extremely small amounts of CLL cells remaining in your blood or bone marrow. These are often used a few months after your regular blood tests are normal. Once the results of the MRD tests reach MRD-U (Undetectable or Unmeasurable) then the doctors may consider / propose stopping treatment
mRNA -Nov 7, 2023 ·The role of mRNA is to carry protein information from the DNA in a cell’s nucleus to the cell’s cytoplasm (watery interior), where the protein-making machinery reads the mRNA
Nov 7, 2023 ·The role of mRNA is to carry protein information from the DNA in a cell’s nucleus to the cell’s cytoplasm (watery interior), where the protein-making machinery reads the mRNA
ORR - Overall Response Rate (As in lab studies of a number of patients)
PFS - progression-free survival - Length of time a patient lives with the disease after or during treatment but it doesn't get worse.
RBC - Red Blood Cells - The test can help diagnose different kinds of anemiab(low number of RBCs). Other conditions that may require an RBC count are: Disease that damages kidney blood vessels (Alport syndrome); White blood cell cancer (Waldenstrom macroglobulinemia), Disorder in which red blood cells break down earlier than normal (paroxysmal nocturnal hemoglobinuria) or Bone marrow disorder in which the marrow is replaced by scar tissue (myelofibrosis)
WBC - White Blood Cells - A type of blood cell that is made in the bone marrow and found in the blood and lymph tissue. WBCs are part of the body’s immune system. They help the body fight infection and other diseases. Types of WBCs are granulocytes (neutrophils, eosinophils, and basophils), monocytes, and lymphocytes (T cells and B cells).
Cheers
Dan.
Vaccines – at what point do they become a disbenefit?
WHEN YOUR CLINICAL TRIAL FAILS, WHAT DO YOU DO NEXT ?
Just not sure what we can and can't do 
what do you think
Watch and Wonder, but Do-no matter what stage!!!
