When I first started this perilous adventure with Hodgkin lymphoma I got lost in all the terms, procedures, and medical speak. Sometimes professionals forget they’re talking to people that didn’t learn Latin! Or Greek! I remember one day telling one of them “I don’t speak Doctor.”
I started this page as a glossary to some of the pokes and prods I’ve encountered, along with words I’ve had to look up. I hope it will help anyone that finds themselves lost and overwhelmed with cancer and Hodgkin lingo. At times I include reflections of my experience and detail on what the procedures are like. It is important to note that these are my experiences and everyone responds differently. Oh yes, there are a number of links to reputable sites for further information.
I’ll add more as I continue on my perilous road.
I hope it is useful but please note that although I take care to ensure that the information is accurate, I am not a medical professional. If you have questions or concerns about your health you should speak to a doctor.
Disclaimer done, let’s get on with the Hodge.
ABVD is used as a first-line treatment for Hodgkin lymphoma, usually given every two weeks as an outpatient. It comprises the drugs:
A - Adriamycin B - Bleomycin V - Vinblastine D - Dacarbazine
Well, those are their proper names. I had 8 cycles of it (16 doses) and in the end, I called it Awful Bastard Vicious Devil. But many people have fewer cycles and tolerate it well.
If you need more information about ABVD, click here: Macmillan AVBD chemotherapy
Allogeneic stem cell transplant – stem cells are collected from a matching donor and transplanted into a patient to suppress the disease and restore the patient’s immune system. Further information can be found at the links below:
Autologous stem cell transplant is a type of transplant that uses the person’s own stem cells. These cells are collected in advance and returned at a later stage. They are used to replace stem cells that have been damaged by high doses of chemotherapy, used to treat the person’s underlying disease.
In practical terms, you will have had treatment to get you into remission (or close) and your stem cells will have been collected (see Leukapheresis) before you are admitted to hospital.
Once the transplant begins they give you really strong chemotherapy (such as BEAM) that destroys your bone marrow. Then your stem cells, that were collected & frozen few weeks before, are thawed and returned to you via a drip, so it’s just like getting I/V fluids. You’re in the hospital during the treatment and stay there until your blood counts have sufficiently recovered. This is because the chemotherapy destroys your bone marrow, and subsequently your immune system. You will be very vulnerable to infections until your blood counts begin to rise. It will mean a hospital stay of a few weeks.
Having been there and done that: it is a tough but do-able treatment but it took me a few months to fully recover.
Further information on autologous stem cell transplants can be found at Lymphoma Association: Autologous Stem Cell Transplant booklet
BEAM high-dose chemotherapy is a combination of drugs given as part of a stem cell transplant. It comprises:
B – Carmustine (BiCNU) or Lomustine (CCNU) E – Etoposide A – Cytarabine (Ara-C, cytosine arabinoside) M – Melphalan
This is the big gun – particularly the M that destroys your bone marrow. It’s given in hospital over 5 days just before transplant. It’s tough and you feel exceptionally unwell for several days. But once your blood counts start to rise again you begin to feel better. I found this one, and particularly the M, very difficult but that’s to be expected.
For further information on BEAM chemotherapy click the following link: Macmillan BEAM chemotherapy
Brentuximab is used to treat Hodgkin patients after failure of an autologous stem cell transplant or after the failure of at least two prior multi-agent chemotherapy regimes in patients who are not candidates for autologous stem cell transplants.
It is a targeted monoclonal antibody that attaches to a protein called CD30, which is present in classical Hodgkin lymphoma cells.
In layperson terms, cancer cells grow and divide quickly. To date, traditional chemotherapies (for example ABVD and ESHAP) have focused on killing all fast-dividing cells, including the normal healthy cells in your mouth and digestive tract, or those that cause your hair to grow. Brentuximab takes a different approach. Instead of a scattergun hit everywhere, it targets and attaches to the CD30 receptor sites on Hodgkin cells and then delivers a chemotherapy that kills that individual cell. Pretty clever, right?
I conceptualise it as one of those shape-sorting games for babies. The box is the Hodgkin lymphoma cell and the CD30 receptor site is the triangular-shaped hole. Brentuximab is the red plastic triangle that once in the correct slot delivers the poison that destroys the cell (e.g. cancer). But that’s how I think – greater minds know more. I’ve had several cycles of Brentuximab and tolerated it very well. I was even able to continue working during treatment (which may not be the case for everyone).
It’s not without its side effects and risks so for further information click the following link Cancer Research UK: About Brentuximab
Blood type – blood cells contain factors that are not the same in all people. Before a transfusion can occur, blood samples from the donor are classified as type A, B, AB, or O. Another test called ‘cross match’ ensures the compatibility of the blood between the donor and recipient.
Bone marrow transplant – a procedure in which bone marrow stem cells are collected from one individual (the donor) and given to another (the recipient). See also allogeneic stem cell transplant. The stem cells can be collected either directly from the bone marrow or from the blood by a procedure called leukapheresis. Sometimes the patient serves as his or her own bone marrow stem cell donor (see also autologous stem cell transplant).
CD34 is a unique marker that is found on the surface of bone marrow stem cells. Special chemicals called monoclonal antibodies can be used to identify the CD34 positive stem cells in the bone marrow or blood. CD34 positive stem cells can be purified and T-cell depleted for transplanted from donors who are mismatched (haplocompatible) with the recipient.
Central line or central venous catheter is a soft flexible tube that is placed under the skin and then directed into a large blood vessel leading into the heart. The catheter allows fluids, medications, nutrition and blood products to be given without sticking the patient with a needle. Blood can also be drawn through the catheter for laboratory tests. The catheter may have either one or two tubes or lumen.
Chemotherapy drugs are primarily used to destroy cancer cells but also used in bone marrow or stem cell transplant patients without cancer in order to ensure successful engraftment. These drugs have side effects that affect other normal cells in the body. It’s often called chemo.
Chimerism – in stem cell transplants this is when the donor cells have durably engrafted in the recipient. Full donor chimerism implies that 100% of the bone marrow and blood cells are of donor origin, while mixed or partial chimerism means that the patient’s cells are still present.
Conditioning regime is a term use for those chemotherapy drugs (a common one is BEAM but there are others) and sometimes radiation that collectively prepare the body for transplant.
Complete remission – see also Remission – A complete remission is the complete disappearance of all manifestations of disease.
Donor – the family member (parent, brother or sister) or unrelated volunteer who donates his/her bone marrow stem cells (see also allogeneic stem cell transplant). Sometimes the patient serves as his/her own donor (see also autologous stem cell transplant). On the day of transplant the donor either goes to the operating room and under general anaesthesia and has multiple bone marrow aspirations (bone marrow harvest) to remove a portion of bone marrow, or undergoes a procedure called leukapheresis to collect bone marrow stem cells from the blood.
EKG (Electrocardiogram) is a machine that records electrical measurements of the heart’s impulses.
Engraftment is the successful growth of donor bone marrow stem cells in the recipient.
ESHAP is a reasonably intensive chemotherapy regime used for salvage therapy in relapsed or refractory Hodgkin lymphoma. It stands for
E - Etoposide, SH – methylprednisolone (a steroid) A - Ara-C (cytarabine) and P – cisplatin (platinum)
In the UK it is usually given over 5 days in the hospital (requiring a 6-7 day stay as an inpatient). This is followed by a ‘rest’ of just over two weeks, during which you are closely monitored, before the next cycle. I had two cycles and tolerated it fairly well. I found it easier to manage (on a day to day basis) than ABVD.
For more information on ESHAP visit Macmillan ESHAP chemotherapy
Gastrointestinal (GI) – pertains to the digestive tract which includes the mouth, throat, oesophagus, stomach, small and large intestine and rectum.
G-CSF (Granulocyte Colony Stimulation Factor) is a drug that is found naturally in the body and that stimulates the production of granulocytes (neutrophils) by the bone marrow. G-CSF is also used to increase the number of stem cells circulating in the blood.
Graft vs Host Disease (GVHD) is a reaction between the transplanted T-lymphocytes of the donor (graft) and the tissues/organs of the patient (host). The T-cells of the donor graft can attack the recipient’s tissues. The skin, GI tract, liver and other organs can be affected.
Haematological malignancies are forms of cancer that begin in the cells of the blood-forming tissue, such as the bone marrow, or in the cells of the immune system. Examples of haematological cancer area are acute and chronic leukaemias, lymphomas, multiple myeloma, and myelodysplastic syndromes.
Haematologist is a physician specialising in the disease of the blood cells and blood-forming organs.
Haematologist-Oncologists– often called VAMPIRES with great affection in my blog – are doctors with special training in the diagnosis and treatment of blood diseases (especially blood cell cancers such as iron-deficiency anaemia, haemophilia, sickle-cell disease, leukaemia and lymphoma. They are trained in both haematology (the study of blood) and oncology (the study of cancer). Some haematologist-oncologists become stem cell transplantation experts – like my Prof.
Haematology is a branch of medicine concerning the study of blood, the blood-forming organs, and blood diseases.
Histocompatibility is the degree of tissue similarity between the donor and recipient that will determine how easily the donor cells will be accepted and/or the likelihood and severity of GVHD.
Histocompatibility (HLA) typing are blood tests of the tissue typing system. The HLA and MLC determine the likeness between potential donor-recipient pairs.
HLA – Human Leukocyte Antigen – see histocompatibility typing.
Hodgkin lymphoma (HL) – or the Hodge in my blog – is an uncommon cancer of the lymphatic system, which is part of the immune system. The lymphatic system contains white blood cells called lymphocytes that help protect the body from infection and disease. HL originates in these white blood cells that begin to grow abnormally and spread beyond the lymphatic system. It can occur at any age but is more common in people aged 15-40 and those over 55.
The most common HL symptom is swelling of the lymph nodes, which causes a lump under the skin. This lump usually isn’t painful and may be found on the side of the neck, in the armpit, or around the groyne. Other symptoms of HL include night sweats, itchy skin, fever, fatigue, unintended weight loss, persistent cough or pain in the lymph nodes after drinking alcohol.
These symptoms can also be signs of other conditions. If you are concerned you should visit your doctor.
More information about Hodgkin lymphoma can be found in a free booklet that can be downloaded at Lymphoma Association: About Hodgkin Lymphoma
Immune system is the body’s system of defences against disease. The immune system is primarily composed of white blood cells and antibodies.
Immunology is a branch of medicine which studies the body’s natural defence mechanisms against disease. An immunologist is a physician that specialises in this area of medicine.
Immunosuppressed is when the body has a reduced ability to adequately fight infections.
Infection is the invasion of any part of the body by germs. Bacteria, viruses and fungi are the major germs that infect transplant recipients.
Informed consent is the process whereby a patient/parent/legal guardian is given information about a specific surgery or treatment (i.e. bone marrow transplant). All potential risk and benefits must be understood prior to the signing of a consent form. It is a legal document that gives the physician permission to perform the procedure.
Intravenous (IV) is the administration of fluids/medications directly into a vein.
Leukapheresis is a procedure that is used to collect bone marrow stem cells from the blood (see PBSC). Typically the donor of the PBSC is treated prior to the procedure with several days of G-CSF injections to mobilise the bone marrow stem cells into the circulating blood. The blood is then passed through a machine that collects that part of the blood containing stem cells. The remaining blood is returned to the donor.
I underwent leukapheresis as part of my autologous transplant. It’s a bit like a dialysis machine. It doesn’t hurt but you end up laying around in hospital for a day or two while it happens.
Mediastinal mass (tumours) are benign or cancerous growths that form in the area of the chest that separates the lungs. This area, called the mediastinum, is surrounded by the breastbone in front, the spine in back and the lungs on each side. The mediastinum contains the heart, aorta, oesophagus, thymus and trachea. It also contains a number of lymph nodes.
MUD means Matched Unrelated Donor and is a type of transplant when the donor is not related to the recipient.
Neutrophil is a type of white blood cell that plays a major role in fighting bacterial and fungal infections.
Neutropenia is a low level of neutrophils, a type of white blood cell your bone marrow creates. They travel in your bloodstream to remove areas of infection. Neutropenia itself doesn’t cause symptoms. Infections can occur as a complication of neutropenia. They occur most often n the mucous membranes, such as inside the mouth and the skin.
PBSC (peripheral blood stem cells) are these are bone marrow stem cells that are circulating in the blood and can be collected by leukapheresis. To increase the number of PBSC, donors receive GCSF for several days prior to leukapheresis.
PET/CT is both a positron emission tomography (PET) scanner and an x-ray computed tomography (CT) scanner. It combines images from both scans into a single superimposed image. This means that the functional imaging of the PET that shows the distribution of metabolic activity in the body is aligned with the anatomic imaging of the CT scan.
In practical terms, when you are scheduled to have a PET/CT you are told to fast 8 hours before the scan (you are encouraged to drink water). When you arrive at the scanning centre you are injected with a glucose-type substance that contains a small amount of a radioactive tracer. You sit or lay down for an hour or so (good time for a nap) to allow the substance to distribute around your body. You then remove any metal objects and jewellery before entering a room with a machine that resembles a giant doughnut (see my Scanxiety! post for a photo). You lay down on the table and the machine does the work. It’s a painless process but that fact does not make the wait for results any easier.
The theory is that cancer cells are greedy and will take up more of the glucose substance, and by extension more of the radioactive isotopes, causing them to glow more brightly in the image. This shows the radiographers and doctors if cancer is present and where. It’s fascinating stuff that I wish I knew nothing about (like most things on this page)
If you want more information click to go Cancer Research UK: About PET/CT Scans.
Remission is a temporary end to the medical signs and symptoms of an incurable disease [such as cancer]. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.
Stem cells are the youngest bone marrow cells from which other bone marrow cells are formed.
Total Body Irradiation (TBI) is treatment using radiation to kill cancer cells and/or prepare the body for transplant by destroying diseased cells and suppressing the recipient’s immune system’s ability to reject the donor cells.
Transfusion is a procedure that supplies the body with a specific type of blood cells (red blood cells or platelets) that are low in number.