Are You Comfortable?

"Courage is resistance to fear, mastery of fear – not absence of fear." Mark Twain

"Resoluteness Is The Vigour Of Sustainability" S Rush July 2010

These pages are going to be about our journey with Non Hodgkin's Lymphoma which I was diagnosed with on the 8th January 2010 at the age of 35.
Thank youA very big thank you to all that have sent cards, emailed, texted, rung, called round, private messaged and anybody else who has wished us well from an amazing proportion of the worlds countries....Mandy and I are both immensely humbled and take a lot of strength and positivity from all the kind words.
A very big and personal thank you to Dad and my "Angel" Mandy both of which will always guide me home.


My Disease Particulars
Fine Needle Aspiration - Inconclusive
CT Scan - 30mm Lump On Right Side Of Neck
Non Hodgkin's Lymphoma Diffuse Large B Cell
LDH Levels - NormalBone Marrow & Trephine - Clear
1st Pet Scan After Lump Removed - Negative
Stage - 1A (Localised)
3 x R-Chop 21 Chemo Treatments (1st cycle on 2nd Feb 2010 - 3rd Cycle On 16th March)
Radiotherapy x 15 sessions (First Session On 15th April 2010- Last Session On 6th May 2010)

The pages on the left will be a diary for family, friends and for anybody else who may benefit from our experience. Whilst we found out it is Non Hodgkin's Lymphoma (NHL for short) on the 8th January 2010 we only found out the strain of the disease on the 22nd Jan 2010 which after looking like a very rare form named Burkitts Lymphoma, which would have required a very intensive chemotherapy program with several months in hospital to contend with, we were given "good" news (even cancer has good news sometimes) as it has been classified as the most commonly diagnosed aggressive or high grade Lymphoma, namely Diffuse Large B Cell which will require a different kind of treatment and one that will be mostly given as an out-patient.

If you are interested a very good website about my disease is Lymphoma.org
To point you in the correct direction with regards that website I have put a few links that lead to relevant pages below. The links open pages of the site which then allow you to read online booklets in a PDF format which you can view or download.

What is lymphoma?
Lymphoma, like other cancers, is a disease of the body's cells. Cells in different parts of the body work in different ways, but they all repair and reproduce themselves in the same way. Normally, cells divide in an orderly and controlled manner. However, if for some reason the process gets out of control the cells carry on dividing. There may be too many immature white blood cells in the blood or bone marrow, which may cause a lump or tumour to develop in one or more groups of lymph nodes.
Two diagrams, one showing normal cells and the second showing cells forming a tumour

Lymphoma cells generally start to grow in lymph nodes, which are part of the lymphatic system.
Usually non-Hodgkin lymphoma| (NHL) affects groups of lymph nodes in one area of the body. However, the lymphoma cells can sometimes spread through the lymphatic system to lymph nodes in other parts of the body. They can also go into the bloodstream, which may carry them to other organs. When the cells reach a new area they may go on dividing and form a new tumour.
There are lymph nodes and lymph vessels throughout the body, so NHL can occur in any part of the body. The most common place is in the lymph nodes in the neck. The next most common places are the lymph glands under the arms (axilla), in the chest, or in the groin or abdomen. It can also occur in organs. In some people NHL can affect the liver, lungs or bone.
Most lymphomas are lymphomas of the B-cells; however there are also some which are lymphomas of the T-cells. These occur more commonly in teenagers and young adults. 

A good overview of Non-Hodgkin's Lymphoma HERE
Lymphoma Information HERE
Non Hodgkin's Lymphoma HERE (click on the High Grade Booklet section) Here you will see the info on both strains of the disease that I may have

The lymphatic system

The lymphatic system is a complex network of tubes, glands and other organs such as the spleen. The tubes are called lymph vessels. The glands are called lymph nodes. We have lymph nodes and lymph vessels throughout our bodies. The lymph nodes are often found in groups, particularly under the arms, in the neck and in the groin. The lymphatic system is part of the body’s natural defence against infection – the ‘immune system’.
The lymphatic system helps to transport things from place to place around your body. These things include cells and waste products. These are carried in a clear fluid called lymph. The lymph moves through the lymph vessels and lymph nodes. The lymph nodes are an important part of your immune system. Your lymph nodes ‘kick start’ your body’s defence against infection. The lymph carries white blood cells called lymphocytes. Lymphocytes help our bodies to fight infection.
Cause of lymphoma

The cause of lymphoma remains unknown. There is no evidence to suggest that anything you have done or not done has caused your lymphoma. You can’t catch lymphoma from someone and you can’t give it to someone else. Some people are more at risk of lymphoma because of another medical condition, particularly conditions that affect the immune system. For example, people who have HIV and AIDS are more at risk of non-Hodgkin lymphoma. This does not mean that you will develop HIV or AIDS if you have non- Hodgkin lymphoma. Some kinds of lymphoma are related to common viruses. Research studies have investigated possible causes of lymphoma, such as chemicals present in the working environment or increased risk of lymphoma in some families. But it will be a long time before scientists understand this subject properly.Research studies have investigated possible causes of lymphoma, such as chemicals present in the working environment or increased risk of lymphoma in some families. But it will be a long time before scientists understand this subject properly.
Staging

Staging means finding out what parts of your body are affected. Staging involves a number of tests. Don’t be worried if you don’t have all of these tests. Sometimes the most common tests are all that are needed to find out about your lymphoma. Most of these tests will be done as an outpatient – in other words, you won’t need to stay in hospital overnight. Blood tests Blood samples will be taken to give your doctor information about your general health. Blood tests will check things like your liver and kidney function.Other blood tests give an indication of how your general health might be affected by your lymphoma. For example, your blood count gives information about the red cells, white cells and platelets in your blood. In some cases, your doctors may wish to test you for HIV. This is because some cases of lymphoma are related to HIV. You will have blood tests at regular intervals during your treatment and afterwards.
Bone Marrow Biopsy

The bone marrow is spongy, jelly-like tissue found in the middle of the large bones in our bodies. The bone marrow makes our blood cells. It is common for lymphoma cells to be found in the bone marrow. A bone marrow biopsy may be needed to check for lymphoma cells. A bone marrow biopsy involves taking a sample of bone marrow through a large needle. You will be asked to put on a hospital gown and lie down on a table. The needle is usually inserted through the skin into the bone of your pelvis (your hip bone) following a local anaesthetic. The procedure takes around 15 – 20 minutes. Although doctors use a local anaesthetic, this is a painful procedure. You may need to take pain-killers before and after your bone marrow biopsy. Sedatives can help too. Ask your specialist first for advice about what to take. You may hear this test referred to as ‘bone marrow aspirate’ or ‘bone marrow trephine’. Both are types of bone marrow biopsy. A bone marrow trephine takes more tissue, which gives your doctor more information about the structure of the marrow and the cells within it. 
X-rays

X-rays can be used to look at various parts of your body. For example, a chest x-ray may be used to see if there are any enlarged lymph nodes in your chest. X-rays are painless and shouldn’t take longer than a few minutes. 
Scans 

Scans give a more detailed picture of the body’s internal organs and lymph nodes. A CT scan or CAT scan involves lying on a bench that moves your body into a cylinder-shaped camera. The camera takes computerised pictures of your insides. Unlike x-rays, which give a see-through picture from front to back, CT scans give a picture of your body in cross section from top to bottom. As the bench moves, the camera takes pictures of the different layers of your body. You may be asked not to eat or drink on the morning of the scan. Most people will be given a liquid to drink, or an injection into a vein, beforehand. These are to make it easier to see some of your internal organs. The drink or injection might make you feel hot all over but this usually only lasts a few minutes. Tell someone if you feel this way. If you are allergic to iodine, or if you have asthma, it is important that you tell the people doing the test before you have the drink or injection. The scan is painless, and takes 5 – 20 minutes. You will be asked to lie quite still while the pictures are being taken. MRI (or NMR) scans are similar to CT scans, except they give a slightly different image of the internal structures of your body. MRI is particularly good at imaging certain tissues such as the brain. Like having a CT scan, you are asked to lie on a table that moves you into a cylinder. The cylinder measures magnetic waves as they pass through your body. This test takes about an hour and is painless, but can be very noisy and you may feel claustrophobic. Because the cylinder uses a magnet, you should take off all metal jewellery beforehand. You should also let the technicians know if you have any other metal implants, such as a replaced hip or a pacemaker. Sometimes metal ‘staples’ are used instead of stitches after an operation, so mention this if you still have them in after your biopsy. PET scans provide images of internal structures, but they also provide information about the activity of the cells. They can help doctors to distinguish between malignant and non- malignant T -cells. Like a CT scan, you will be given an injection beforehand. PET scans can take up to an hour. PET scanners are not common at the moment, and there are only a few centres in Britain that have them. They will probably become more common in the future. There are some machines that combine PET scans with CT scans, but these are not widely available at present. An ultrasound scan may be used to check the inside of your abdomen. This scan uses sound waves that bounce off internal organs to create an image. You will be positioned on your back, and a gel rubbed onto your stomach. A technician will then pass an instrument over the gel to produce a picture on a small screen. It is a painless procedure and takes about a quarter of an hour. An ultrasound scan may be used to check the inside of your abdomen. This scan uses sound waves that bounce off internal organs to create an image. You will be positioned on your back, and a gel rubbed onto your stomach. A technician will then pass an instrument over the gel to produce a picture on a small screen. It is a painless procedure and takes about a quarter of an hour.
Lumbar puncture

Around your brain and spinal cord is a fluid called CSF – or ‘cerebrospinal fluid’. Some kinds of high grade non-Hodgkin lymphoma can get into the CSF. Your doctor may want to do a lumbar puncture to take a sample of your CSF using a needle and syringe. The CSF will then be examined under a microscope. You will be positioned either on your side curled up with your knees to your chest, or sitting up and leaning forward onto a support. A doctor will feel for a gap between the bones of the ‘lumbar’ part of your spine, or the small of your back. A needle is inserted in the gap, and a little CSF is drained off. A local anaesthetic will be used. You will be asked to keep very still. You may have to lie down for a period of time afterwards. This is because it is common to get a headache after a lumbar puncture, and the headache is made worse when sitting up.
The stage of your lymphoma

Once all the test results are ready, your doctor will be able to tell which parts of your body are affected by your lymphoma. This is called the stage of your disease. The different stages are described below.
Stage 1

One group of lymph nodes is affected on one side  of the diaphragm
Stage 2

Two or more groups of lymph nodes are affected  on one side of the diaphragm
Stage 3

Lymph nodes are affected on both sides of the  diaphragm 
Stage 4

Lymphoma can be found on both sides of the  diaphragm and in organs outside the lymphatic system or in the bone marrow
In addition to the stage, you may also hear the letters ‘A’ or ‘B’ used to describe your illness. This refers to whether or not you’ve had significant weight loss, drenching night sweats or unexplained fevers. ‘B’ means that you have had one or more of these symptoms and ‘A’ means that you have not. In some cases, lymphoma can be confined to places outside the lymphatic system. Your specialist might use different terms to describe the stage of your disease. For example, some doctors will use the letter ‘E’ for ‘extranodal’ to refer to disease that is outside the lymphatic system. These tests can take a couple of weeks to complete. This might seem a long time, but the information being collected is very important. Your doctor needs to know as much as possible about your illness before choosing the treatment that will be best for you. It can be frustrating and worrying to have to wait before you find out more, and you may find this time difficult.
What is meant by high grade? 

Lymphomas are described as high grade if the cells appear to be dividing quickly. If the cells are dividing quickly, the lymphoma will grow quickly. You may also hear your doctors use the word ‘aggressive’ or ‘histologically aggressive’. Some lymphomas grow faster than others. The rate of cell division will vary from person to person. No two people are identical, even if ‘on paper’ their lymphomas are the same.
Diffuse large B-cell lymphoma

Diffuse large B-cell lymphoma (DLBCL) is the most common kind of high grade non-Hodgkin lymphoma. The word ‘diffuse’ means that the cells are spread throughout the lymph node, compared to other lymphomas where the cells form clumps in the lymph nodes. DLBCL is the most common type of high grade non-Hodgkin lymphoma. Around 3000 people are diagnosed with DLBCL each year in the UK. It is slightly more common in men than in women. It is most likely to occur in those aged over 50. Sometimes,DLBCL occurs in people who have had low grade non-Hodgkin lymphoma in the past that has changed to become high grade. Some people with DLBCL have disease at stage 1 or 2 when they are diagnosed. Most people will have more advanced disease at stage 3 or 4. It is quite common for people with DLBCL to have disease in parts of the body other than the lymphatic system. You may hear the word ‘extranodal’ used to describe this. For example, it is relatively common for DLBCL to affect the bowel. The symptoms of DLBCL depend on what part of the body is involved. Some people have no symptoms other than a lump or swelling. Others experience weight loss, flu-like symptoms or night sweats. It is quite common for DLBCL to cause gastric symptoms such as abdominal pain.sweats. 
How is it treated?

DLBCL is treated with a combination of chemotherapy and antibody therapy. The most commonly used treatment is R-CHOP. CHOP stands for a combination of chemotherapy drugs: Cyclophosphamide, Hydroxydaunorubicin, Oncovin, Prednisolone. This combination of drugs has been used for many years in the treatment of high grade non-Hodgkin lymphoma. It is given over a course of 4-6 months, and includes some drugs that are given in a drip and some that are taken as tablets. You don’t usually need to stay in hospital to have this treatment. The ‘R’ stands for an antibody therapy called rituximab. Rituximab or MabThera® targets a protein called CD20, which is found on the surface of most B-cells. It then helps your immune system to kill the malignant B-cell. Rituximab is given through a drip. Sometimes people stay in hospital overnight after their first dose of rituximab. A small proportion of people with DLBCL do not produce CD20 on their B-cells. These people will have treatment with CHOP alone. Some people with DLBCL will have treatment with radiotherapy as well as chemotherapy. This includes people who have early stage disease – Stage 1A or 2A. In these cases, chemotherapy may be reduced to a period of 2 – 3 months. It also includes people who had a particularly large tumour to start with. This large tumour may be treated with radiotherapy once chemotherapy has finished.

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