About the Disease
Hodgkin’s disease (HD) is a type of lymphoma. Lymphomas are cancers of the lymphatic system - the body’s blood-filtering tissues that help to fight infection and disease. Like other cancers, lymphomas occur when cells divide too much and too fast. Growth control is lost, and the lymphatic cells may overcrowd, invade, and destroy lymphoid tissues and metastasize (spread) to other organs.
The type of HD that I have is called Nodular Sclerosis Hodgkins Disease. Nodular sclerosis Hodgkin’s disease (NSHD) is the most common subtype of HD and accounts for 65% to 80% of all cases. It tends to occur in adolescents and young adults (under 50 years), and it is the only form of HD that strikes more women than men. The disease typically arises in the lymph nodes of the chest and other sites above the diaphragm, the large abdominal muscle that controls breathing. Bulky tumor growth may occur in the mediastinum (organs and tissues of the middle chest) and it may spread to the tissues of the lungs.
I have been diagnosed as Stage 2 X which basically means a bulky mass above my diaphragm that has not spread to my lymph nodes (that was confirmed through a revolting bone marrow test). As they cannot do a CT scan below my diaphragm because of the baby they cannot confirm it is not below my diaphragm however they have done an ultrasound and they are pretty sure it isn’t (it makes no difference to treatment anyway from what I understand as what I am having is the most I can have)
Incidence
Each year in Australia about 400 people are diagnosed with HD with the peak age being 15 – 30 years old.
Causes
The incidence of lymphoma is increasing every year. In most cases we don’t know what causes lymphomas but there are likely to be a number of factors involved. Like all cancers, lymphomas may result from damage to (or mutation of) special proteins called genes that control the growth and division of cells. We know that people with a weakened immune system (either due to an immunodeficiency disease or drugs that suppress the function of the immune system) are at an increased risk of developing lymphomas. Certain types of viral infections may also play a role, especially in people with a weakened immune system.
Symptoms
Lymphomas commonly present as a firm painless swelling of a lymph node (swollen glands), usually in the neck, under the arms or in the groin. Other symptoms may include:
· Recurrent fevers
· Excessive sweating at night
· Unintentional weight loss
· Persistent lack of energy
· Generalized itching
Lymphoma may develop in the lymph nodes in deeper parts of the body like those found in the abdomen (causing bloating), or in the chest (causing coughing, discomfort in the chest and difficulty breathing).
Treatment
Chemotherapy is the course of treatment. Due to its size and other factors removing it and radiation is not an option. The chemotherapy I am on is called ABVD (abbreviation for doxorubicin, bleomycin, vinblastine, and dacarbazine). I am also on some other steroid based tablet drugs called dexmethsone as well as a swarm of other asthma and anti chemo drugs (I rattle and shake at the moment). The chemotherapy will be every fortnight for 8 months. Then they will test it all and perhaps look at radiation if it is not all gone.
The ABVD treatment is given to me each 14 days by IV drip that takes about 3 – 4 hours. The nurse has to spend about half the time manually injecting into the drip and the balance is just a bag going in. The drugs are irritating to the lining of the vein and that causes a little pain but a hot pack further up my arm tends to ease it enough to be ok. The give me a dose of 6 hour dose of Maxalon upfront to try to keep the nausea at bay. People usually also have another anti nausea drug called Zoffran but that is not shown to be perfectly safe in pregnancy so I am opting out of that one and suffering through the nausea until Arielle comes out.
The chemotherapy drugs destroy cancer cells by preventing them from growing and dividing rapidly. Unfortunately, a number of the body’s normal, noncancerous cells also divide rapidly and therefore are harmed by chemotherapy. Specifically, the hair follicles, red and white blood cells, platelets (blood particles responsible for clotting), and cells that line the gastrointestinal system may be damaged or destroyed, causing side effects. The 14 day cycle is important because basically the immune system regenerates itself within 14 days and then it can just cope with getting hit again. The cancer will only be ready to grow again at 14 days so it is still hit whilst it is down so to speak!
Apparently my immune system starts to go down after having chemotherapy and gets to its lowest around a week after chemo. This is my most dangerous time as I am at most risk of infection. If I pick up an infection they cannot give me a chemo session. I have to take my temperature each day and at any sign of a fever it is straight to hospital. Every little thing that happens to my body now is a medical issue and something I have to report on to be monitored!
Side Effects
The ABVD cause the following side effects –
· Doxorubicin - cardiotoxicity (heart damage), worsening of symptoms caused by other drugs
· Bleomycin - pulmonary fibrosis (scaring of the lung), idiosyncratic reaction (such as hives), oxygen toxicity (basically means high doses of oxygen become toxic and can be fatal so I will have to wear an arm bracelet to state this for a few years)
· Vinblastine - hair loss, leukopenia (decreased numbers of white blood cells), nervous system effects, worsening of symptoms caused by other drugs
· Dacarbazine -nausea, vomiting, flu-like symptoms
There are other side effects as well such as reduced muscle tone (my legs are jelly trying to run or walk up stairs and I even struggled to open the tap at home yesterday), clinical depression (mind over matter with positive attitude and lots of yoga and pilates on this one for me as there is no way they are adding anti-depressants to my list of toxic substances I am pumping into my body) and skin irritations (I look like a pimply 15 year old on my face and chest and have developed dermatitis on my hands). As the heart / lung damage is obviously a serious concern each time before I have the chemo I have to have a revolting lung function test to make sure that my heart and lungs have not been too adversely effected. I also have weekly blood tests to check all of my blood levels. If any levels start going too low then I get a transfusion. I have been told to expect quite a few of these which I am ok with now.
I agree the side effects don’t look great but remember they are killing the cancer and that is a good thing.
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