I can remember the first day I was admitted to the hospital. It had been only hours since my diagnosis and there were doctors and nurses everywhere. Before I knew it, I was taking what seemed like an unlimited number of pills and had three IV lines running at the same time. As a person who has always taken great pride in her independence and, maybe, is a little controlling of her environment (What?! I don’t turn all my canned goods face forward in the cupboard! Who am I kidding. Yes, I do), it was hard to lose all control of my life in an instant. It was even more distressing to not understand the new language I was hearing. Along the way, I started writing things down to help myself, and my caregivers out. Here is an alphabetical list of some of the language I have come to learn, including links to outside sites with more information, that might help you grasp what is happening a little quicker than I did. If you feel that anything is missing, drop me a line from the Contact Me page, and I will be sure to add.
A
Absolute Neutrophil Count (ANC) – A count of the total number of neutrophils residing within the white blood cells meant to fight infection. Commonly called ANC, neutrophils or neuts.
Acetazolamide – Sold under the brand name Diamox, is a medication used to help reduce pressure in the skull caused by ATRA.
Acute Promyelocytic Leukemia – An aggressive subtype of acute myeloid leukemia in which there are too many immature blood-forming cells (promyelocytes) in the blood and bone marrow. This build up of promyelocytes leads to a shortage of normal white and red blood cells and platelets in the body.
Acyclovir – An antiviral medication used to prevent viral infection during treatment. Could be prescribed as a preventative treatment or as a result of a breakout of viruses such as cold sores or shingles.
Arsenic Trioxide (ATO) – A common IV chemotherapy used to target leukemic white blood cells in those diagnosed with Acute Promyelotic Leukemia (APL).
ATRA (Vesanoid, Tretinoin) – An oral chemotherapy drug used to fight Acute Promyelotic Leukemia. It is classified as a ‘retinoid’.
Avascular Necrosis – is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone’s eventual collapse. The blood flow to a section of bone can be interrupted if the bone is fractured or the joint becomes dislocated.
B
Blood Chemistry Test – blood tests that measure amounts of certain chemicals in the blood. They show how well certain organs are working and can help find abnormalities. Blood chemistry tests may also be called chemistry panels. This type of testing is especially important during chemotherapy to ensure electrolyte levels are within normal range for your body to handle treatment.
Bradycardia – A slow heart rate usually below 60 beats per minute in healthy adults.
C
Costochondritis – Inflammation of the joints between the sternum and ribs. My GP has confirmed this is related to the methotrexate I take for maintenance treatment. During times of significant inflammation, I reduce physical activity requiring me to use my upper body to push/pull or puts any type of pressure and I ice 20 minutes on/20 minutes off for as long as I can take it. Not a comfortable thing to do but helps manage the discomfort. As per usual, speak to your doctor if you are experiencing chest pain, and before attempting this inflammation reducing technique!
Complete Blood Count (CBC) – A complete blood count is a complete evolution of white blood cells, red blood cells and platelets. This will include a full breakdown of neutrophils, monocytes and lymphocytes, etc.
Cryoprecipitate – May be referred to as ‘cryo’. Is a blood product from blood plasma administered by IV to help blood clot when fibrinogen levels are below normal to prevent serious bleeding events.
Cytotoxicity – Any medication you receive considered to be ‘anti-cancer’ drugs is considered to be toxic to cells. Therefore, chemotherapy IV bags and prescription bottles typically have a ‘cytotoxic’ label on them.
D
Differentiation Syndrome – A complication or ATRA, and sometimes Arsenic Trioxide, in the treatment of Acute Promyelotic Leukemia. Typically experienced within the first phase of treatment. May cause weight gain, fluid build up in the body, around the lungs or heart, shortness of breath, difficulty breathing, et. This complication can be quite severe and must be treated immediately.
Dilaudid – Hydromorphone sold under the brand name Dilaudid. Used as a pain medication and is classified as an opioid. May be administered by IV or orally.
E
Ewing’s Sarcoma – a malignant small, round, blue cell tumor. It is a rare disease in which cancer cells are found in the bone or in soft tissue. The most common areas in which it occurs are the pelvis, the femur, the humerus, the ribs and clavicle (collar bone).
F
Fentanyl – an opioid used as a pain medication and together with other medications for anesthesia.
Fibrinogen – This is the component of blood that causes clotting.
FLT3 – A gene mutation associated with complications in the achievement and/or maintenance of remission in Acute Myelocytic Leukemia.
G
H
Hydrocephalus – Hydrocephalus is a condition in which there is an accumulation of cerebrospinal fluid within the brain. This typically causes increased pressure inside the skull.
I
Idarubicin – Chemotherapy often used in the treatment of Acute Promyelotic Leukemia and Acute Myelotic Leukemia. Nicknamed, ‘The Red Devil’.
Imovane (Zopiclone) – a sedative-hypnotize drug prescribed for insomnia or short term sleep disturbances.
J
K
L
Lasix – Furosemide, sold under the brand name Lasix, is a water pill used to help eliminate fluid build up.
Lymphoma – is a group of blood cancers that develop from lymphocytes (a type of white blood cell). Types include Hodgkin Lymphomas (HL), Non-Hodgkin Lymphomas, Multiple Myeloma and immunoproliferative diseases.
M
Meloxicam – Is an nonsteroidal anti-inflammatory drug (NSAID) based pain reliever. As NSAID drugs use up platelets, taking this medication with an underlying blood disorder may result in dangerously low platelet counts.
Multiple Myeloma – is a cancer of plasma cells, a type of white blood cell normally responsible for producing antibodies. In collections of abnormal plasma cells accumulate in the bone marrow, where they interfere with the production of normal blood cells.
Muscle Atrophy – a decrease in muscle mass due to lack of activity. It could be partial or complete wasting away of muscle mass. Usually due to lack of use.
N
Neuropathy – Peripheral neuropathy, a result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet.
Neutropenia – Neutropenia is when your infection fighting white blood cells drop below normal range and put you at risk for infection. This is particularly dangerous because in a neutropenic state, your body is unable to fight off infection.
O
P
Peripherally Inserted Central Catheter (PICC) – A small long tube inserted into the largest vein in your bicep, used to administer intravenous treatment. In same cases, a double line may be inserted to allow two different products to be infused or drawn at a time. Ie. blood products, chemotherapy, hydration, electrolytes such as magnesium or drawing blood.
Polymerase Chair Reaction (PCR) – Is a very sensitive blood or bone marrow test than can help identify genetic biomarkers for blood cancer. Genetic biomarkers are what determines if a translocation of chromosomes are creating cancerous cells. Visit the Leukemia & Lymphoma Society of Canada website for a complete list of tests that can be done to identify what’s going on inside the body.
Prednisone – When using strong chemo drugs to quickly kill cancer cells, there is the risk of differentiation syndrome. Basically, the dead cells can accumulate in the lungs and cause complications with swelling and the organs. Prednisone helps the body eliminate the dead cells to avoid complication.
Q
R
S
Sepsis – a life-threatening condition that arises when the body’s response to infection causes injury to its own tissues and organs.
T
Translocation – a change in a chromosome that causes the production of abnormal cells, known as cancer. Click on the link for a detailed description of the chromosomal translocation of Acute Promyelotic Leukemia.
U
V
Vancomycin – is used to treat serious bacterial infections. It is an antibiotic that works by stopping the growth of bacteria.
I just found your blog post through Facebook and I wish I’d read this blog back in May when I was first diagnosed. It’s so overwhelming when you’re first diagnosed and all the doctors and nurses are throwing medical terminology around casually haha. Thanks for this, it’s so nice reading this knowing that it’s tailored to those of us with APL too, as that doesn’t happen often. Hope you’re doing well. 🙂
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Freya, one of the hardest things for me to deal with through my own experience has been the lack of information tailored to those with acute conditions. Every website and brochure I read basically started with ‘Sorry for your luck’, followed by, ‘understand your options’, which was the most frustrating thing in the world as our only other option is death.
I have felt so compelled to educate and raise awareness as much as I can to help ease this frustration for others. Not to mention, people don’t even know Acute Leukemia exists. Did you know 30% of people diagnosed with APL die because it’s not caught soon enough?
I simply can’t accept that.
I’m glad you found my blog and I hope you find it helpful through the remainder of your journey.
If you need someone to talk to or have any questions, you know where to find me!
Take good care.
Merry Christmas!
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I couldn’t agree more. I didn’t know that statistic but I did know that most APL deaths are due to late diagnosis. Even a lot of haematology doctors I’ve had check ups with, despite being very knowledgeable, don’t know much about APL/the treatment I was having etc. I was incredibly lucky that my symptoms were taken seriously to begin with. Take care and Merry Christmas to you too!
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