Ok some of the medical terms I use now must be confusing so I’m writing a short glossary of what certain things mean! Anything anyone is missing out or doesn’t get then please say. There’s some Links at the bottom too.
NHL – Non Hodgkins Lymphoma. A Cancer of the Blood.
Mediastinal large B-cell lymphoma – my type of NHL. It is a rare form of NHL and is a type of diffuse large B-cell lymphoma. It comes from a rare type of B-cell lymphocyte in the thymus gland, behind the breast bone. Its common in younger women aged 25 – 40.
High Grade: means the lymphoma is aggressive and grows quickly. This is usually good as they respond better to treatment. This is what I have.
Low Grade: the lymphoma is slow growing and often you can go years without treatment or symptoms.
Stem Cell Harvest/Collection – Stem cells collected through a special machine that circulates your blood, takes your stem cells from your bloodstream and returns the rest of the blood to you.
Autologous SCT – Stem Cell Transplant using your own cells. High dose chemotherapy given before your own stem cells that have been collected from your bloodstream are put back into you through a drip to recover your immune system as chemo destroys your own remaining stem cells.
Alllogeneic SCT – Stem Cell Transplant using someone else’s stem cells. High dose chemotherapy given before someone else’s stem cells are put back into you through a drip to recover your immune system as chemo destroys your own remaining stem cells.
BMT – Bone Marrow Transplant – Someone else’s bone marrow given back to you after high dose chemotherapy given destroys your own bone marrow and immune system. The new immune system when it grows attacks the cancerous cells. A BMT is basically an SCT but uses stem cells collected from the bone marrow and not the blood stream.
Bone Marrow - Bone marrow is a spongy material that is found inside the bones (particularly the pelvic bones).
Stem Cells – Within the bone marrow, stem cells develop into the different blood cells. Red Cells, White Cells or platelets. When the cells are fully mature they are released into the bloodstream.
Red blood cells - carry oxygen to all cells in the body
White blood cells - which are essential for fighting infection
Platelets - which help the blood to clot and prevent bleeding.
Lymphocytes –a type of white blood cell that form abnormally during lymphoma. Lymphocytes are an essential part of the body's defence against infection and disease. There are two main types of lymphocyte: B-cells and T-cells.
Lymphatic System - The lymphatic system is one of the body's natural defences against infection. It is a complex system made up of lymphatic organs, such as bone marrow, tonsils, the spleen, and lymph nodes (also called lymph glands). They are connected by a network of tiny lymphatic vessels. Lymph nodes are mainly found in the neck, armpit and groin. The number of nodes varies from one part of the body to another. A milky-looking fluid called lymph circulates through the lymphatic vessels. Lymph contains lymphocytes, which are white blood cells. Lymphocytes are an essential part of the body's defence against infection and disease.
There are two main types of lymphocyte: B cells and T cells. All lymphocytes develop in the bone marrow from immature cells called stem cells. Lymphocytes then mature in different parts of the body. Lymphocytes which mature in the thymus gland (behind the breast bone) are called T-cells. Other lymphocytes mature in the bone marrow or lymphatic organs and are called B-cells.
In non-Hodgkin's lymphoma, the lymphocytes start to behave like cancerous cells and grow and multiply uncontrollably,and may not die off in the way they ought to.
Neutropenic – your neutrophils (type of white blood cell) are very low and you have no or very little resistance to infection. You often show no symptoms of infection apart from a high temperature and have to contact the hospital immediately if it goes above 38’C. Your mainly at risk of this 7-14 days post chemo.
Blood Transfusion – Red count is below 8 point something or very low (normal person is 14 I think) and you need an infusion of red cells. Given through a drip.
GvHD – Graft versus Host Disease - If you have stem cells from a donor, even a brother or sister, there is a possibility that the new cells (the graft) will react against your tissues (the host). Basically the donor’s immune system attacks the patient’s body. iIn some people it can become very severe and even life-threatening. It mainly affects the skin, the gut (stomach and bowel) and the liver. The reaction can occur up to six months after a transplant. You can be given medicines to help prevent this effect.
Chemotherapy – Common treatment of lymphoma
RCHOP – the standard chemo for NHL
IVE – my intensive chemotherapy regime I had in derby
BEAM – the high dose chemotherapy that is done as part of the SCT.
Biopsy – The procedure done to get a sample of a swollen lymph node. My biospy involved surgery to remove a sample from my chest.
Remission – No sign of cancer in the body - 5 years remission is classe as cure
PET scan – Scan which invoves injecting radioactive substaces into you to light up active tumour
CT scan – Scan which shows 3D image of the inside of the body, can identify if there is a mass there but not always tell if its active
GCSF Injections – small injections given into the stomach under the skin to stimulate white cell growth. They encourage the stem cells to spill out into the bloodstream as white cells. Often given before a stem cell harvest and also if your white counts needs to be up quicker in time to have treatments. Can be injected yourself or a nurse can do it. The side effects include intense aches and pains! The injection itself is fine!
Clexane Injections – the painful injections I have in my stomach to prevent clotting when I am in hospital and because the tumor is pressing on veins it helps my blood to thin. Again the injection itself is only under the skin and not painful but the stinging afterwards does hurt!!
Steroids – Tablets that help my symptoms. Side effects include major appetite, mood swings, bloating and not being able to sleep!
SVCO - The superior vena cava (SVC) is a large vein that carries blood from the body straight to the heart. It lies in the middle of the chest, behind the breast bone (sternum). Superior vena cava obstruction (SVCO) occurs when something blocks the blood from flowing along the SVC. The walls of the SVC are thin, meaning they easily become squashed (compressed). This is what causes my swelling feeling in my face and is a sure sign my symptoms are on their way back. It is part of the reason for the clexane injections. Symptoms include the following and I get generally all of these except the swollen blue veins on the chest.
· breathlessness, due to swelling around the windpipe (trachea)
· headaches, which worsen on leaning forward or bending over
· facial swelling with a dark red look to the complexion
· swollen neck
· swollen arms and hands
· visible swollen blue veins on the chest
· dizziness.
Steroids help reduce all of these symptoms.
Central Line/Hickman Line/Femerol Line – the insertion of a thin tube in to usually your chest but in my case this time, in my groin/leg area that you can administer chemotherapy through and get blood from. Involves a minor surgical procedure that you are awake for but can be sedated throughout.
Hematology - the study of blood diseases. I am under the Hematology team not an oncology team. Oncology deals with most cancers but mine is under Hematology as it is a cancer of the blood.
Cannula/Venflon - small needle inserted into the back of your hand or into another vein that can be used to inject medicines intraveneously. This is done for most standard chemotherapies though if you have a line in you don't need as many of these.
Blood Sugar test - pricking the end of your finger to draw blood and measuring your BM on a little machine. Done if you are diabetic or if you are on steroids. Not painful.
Blood Test - Inserting a needle into a vein into your elbow and drawing blood. A regular/daily occurance as a hematology patient. They love their blood! Mine is now taken out of my line but if that didn't work i have it done the normal way.
Blood Gases - A blood test but taken out of the artery in the wrist. Very very painful! not gonna lie! they sometimes give you a local anasthetic before they do this. I have had it done twice, neither time under local! it checks the amount of oxgygen in your blood more accuratley.
Blood cultures - done as an infection screen, like a normal blood test but checks for any bugs in the blood.
Oramorph - oral morphine - a godsend for pain relief
Palliative Care - means a cure is no longer an option and treatment turns to controlling the disease for as long as possible with chemo/radiotherapy, other treatments.
Terminal diagnosis - palliative care is essentially a terminal diagnosis, eventually the cancer will resisit it though sometimes it can be controlled for long amounts of time. When palliative care stops working they just treat the symptoms and ease any pain etc.
BP - Blood pressure, part of daily observations. Mine is usually slightly low for some reason!
Sats - Saturation levels - measures oxygen levels. normal range is 99-100. Mine are about 93 at the min without oxygen, sometimes up to 95. with oxygen they can get up to 97.
Temperature - obvious i know but is part of obs done each day, normal range is 35'c to 37.5. anyhing above 38 is worrying. 2 consistent readings between 37.5 and 37.9 can also cause concern.Pulse - again obvious - meausres your heart rate, normal person's is between 80 - 100. Mine usually averages around 117 - 125ish. Does sometimes go up to 140ish when symptoms are bad. This is known as tachycardic. It once peaked at 280 when I had a heart scare, averaging around 180 for most of that night. Since then I have had a heart scan it has come back clear and they think it was due to swollen lymph nodes around the heart or a reaction to a blood transfusion.
LINKS
CancerBackup's page on my type of NHL:
http://www.cancerbackup.org.uk/Cancertype/Lymphomanon-Hodgkin/TypesofNHL/MediastinallargeB-cell
CancerBackup's general page on NHL:
http://www.cancerbackup.org.uk/Cancertype/Lymphomanon-Hodgkin
CancerBackup's Page on some of the treatment I have/will have:
http://www.cancerbackup.org.uk/Treatments
CancerBackup's page on Blood Transfusions:
http://www.cancerbackup.org.uk/Treatments/Supportivetherapies/Bloodtransfusions
CancerBackup's page on Central Lines:
http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Centralline
General site on NHL - some very good personal stories and information
http://www.lymphoma-net.org/
The Lymphoma Association and Lifesite
http://www.lymphoma.org.uk/
The Macmillan Page - the discussion topic area is good and I sometimes post on it as mellfc
http://www.macmillan.org.uk/
My friend Hayley's Blog, she has Throat Cancer, her blog inspired mine
http://www.kickingcancersarse.blogspot.com/
My Dads Blog
http://blog.myspace.com/index.cfm?fuseaction=blog.ListAll&friendID=237496223
My Facebook Group
http://aston.facebook.com/group.php?gid=6829213762
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