Glossary

My total 6 month chemotherapy is to treat my DLBC NHL using one R-CHOP followed by R-IVAC  then R-CODOX-M then one repetition of R-IVAC and R-CODOX-M. The ‘rounds’ are named by the chemicals involved. Here are some of the words that keep cropping up.

Type of Lymphoma

DLBC: Diffuse Large B cell                                           

NHL: Non-Hodgkin Lymphoma

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Types of therapy

R-CHOP:  An immunochemotherapy regimen consisting of rituximab, cyclophosphamide, hydroxydaunorubicin hydrochloride (doxorubicin hydrochloride), vincristine (Oncovin) and prednisone used to treat both indolent and aggressive forms of non-Hodgkin lymphoma.

R-IVAC: A regimen consisting of rituximab (1 hour infusion), ifosfamide (10  hour infusion), cytarabine and etoposide (12 hour infusion) that can be used in the treatment of non-Hodgkin lymphoma (NHL). Takes 5 days.

R-CODOX-M:  infusions of:  vincristine,  doxorubicin, cyclophosphamide. An injection of cytarabine into the fluid around spinal cord. Two infusions of methotrexate. The first is given over 1 hour. The second is given over 23 hours. 

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Alphabetical

Biopsy: Similar in principle to giving an injection but they take a piece of something out to have a closer look at it through a microscope. It hurts a fair amount sometimes despite the local anaesthetic but it helps them figure out what is wrong. I have to think about this before I say it as I keep calling it an autopsy which is quite a different thing altogether.  

Bone-marrow biopsy: This took a bit of the inside of my pelvis. It was a process of pushing a needle hard into my pelvis bone until it got to the middle then the litter grabber needle would take a tube of red bone marrow out which looked like a tiny worm. She’d given me a local anaesthetic but there was some pain as she was pushing so hard into my pelvis that it was clearly having some kind of knock-on effect and had a dull ache over a wide area.

Cyclophosphamide: Used as chemotherapy and to suppress the immune system so common side effects include low white blood cell counts, loss of appetite, vomiting, hair loss, and bleeding from the bladder. Lovely!

Cytarabine: Also known as cytosine arabinoside, is a chemotherapy. Common side effects include bone marrow suppression, vomiting, diarrhoea, liver problems, rash, ulcer formation in the mouth, and bleeding. Other serious side effects include loss of consciousness, lung disease, and allergic reactions. Cytarabine is in the antimetabolite and nucleoside analogue families of medication. It works by blocking the function of DNA polymerase. Cost to the NHS is £50

Filgrastim:  an injection used to treat low blood neutrophils following chemotherapy or radiation poisoning.

Group and save: a blood test in preparation for a transfusion to make sure its the right blood type

Hyperpigmentation: A common, usually harmless condition in which patches of skin become darker in colour than the normal surrounding skin. This darkening occurs when an excess of melanin, the brown pigment that produces normal skin colour, forms deposits in the skin

Ifosfamide: This was the one that made me sick. It was a 10 hour infusion and I was sick in the first 10 minutes. Too sick to hold onto a pill but the anti sickness injection worked enough to stop me being sick. It also made me drowsy so I slept through the rest of it.

Intrathecal:  The brain has a protection against poison which is usually very useful but as chemotherapy is poison, it is blocked from reaching the brain. So to eliminate ‘nervous system compromise’ intrathecal chemotherapy (IT) bypasses the brains protection by injecting into the spine directly to the brain. 

Neutrophils:  The white blood count and immunity indicator which makes me extremely vulnerable to infection. If I get a temperature, I need antibiotics very quickly and go straight into hospital if I've been allowed home.

Oramorph: Brand name for an oral solution of liquid morphine

PET/CT Scan:  (Positron Emission Tomography) The pet scan looks for radioactive sugar concentrations in your body.  The preparation for this is to have a drip of radioactive sugar and wait for it to go round your body. When the blood has pumped it round your body for about 45 minutes it settles in places where there are areas of lymphoma. The machine takes a 3D picture of the inside of my entire body. 

PICC line: (Peripherally Inserted Central Catheter) This is similar to a catheter to which they can attach any drip into a vein and put stuff in or take blood out. It goes on the inside of your bicep and is a tube fed up the vein inside the shoulder to near the heart where any drugs will go very quickly round the body. It and avoids a multitude of jabs.

Rituximab:  an antibody that sticks to the lymphoma cells, then the cells of the immune system find those cells and kill them. It is not actually a chemotherapy itself but used alongside chemo. I’ve seen some people’s physical reaction to them which looks quite serious but I didn’t react to the first 2 which means that they can halve the time (from 3 hours to 1.5) they take to pump it into me which they call Rapid Ritux. 

Transfusion: A crossover musical genre created by transgender musicians 

Ultrasound guided biopsy: This was like an injection into my lump except they took some of it out rather than put something in. Of course they had to cut a bit out using something like a very small, sharp litter picker.

Vincristine:  A vinca alkaloid which works by stopping the cancer cells from separating into 2 new cells.