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On December 16, my life changed forever. I was in my third semester of college and had just finished my last final exam. Having studied all night, I headed to the university game room to shoot some pool and relax. After a few games I felt painful spasms in my neck and shoulder. At first I thought it was a “pinched” nerve, and I tried to ignore it, but the pain just got worse. I wanted to go home, but I had promised my girlfriend we would meet. As I walked to her building the pain shifted to my chest and I grew short of breath. I remember sitting out on the steps, waiting, and thinking, “What the hell is going on?” Never had I experienced such fear. I thought I would die. Shari and I had been dating for only a month, and I did not want to alarm her. So when she appeared, I said nothing. She, her girlfriend, and I walked over to the cafeteria for lunch. I sat there quietly wearing my best poker face. No one suspected anything. After lunch, the girls left to go to their next exam and I went home. Looking back, I should have asked for help, but I did not. It took me over forty minutes to walk to my car. With each step, the pain was more crippling. I felt like an elderly man inching along with a walker. Foolishly, I drove myself home. I was nineteen years old, but never in my life did I need my mother more. When I walked in the door my younger brothers and sister were there, but mom wasn’t. I collapsed on the couch, but before I could explain mom arrived home. She could hear the desperation in my voice as I told her, “Mom, I have to go to the hospital, something is wrong!” and explained what was happening. She rushed me to the Emergency Room where we waited in the lobby for hours. The nurses had already performed their initial assessment. They thought maybe I had a chest cold or perhaps sprained the muscles in my sternum. They wanted to take an x-ray, but I had to wait. Mom was worried about my brothers and sister being alone. My stepfather had met us at the hospital, so he stayed with me while she went home to care for them.
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After receiving the Emergency Room physician’s preliminary diagnosis our minds were flooded with questions. What is lymphoma? What is Hodgkin’s disease? What is non-Hodgkin’s lymphoma? What are the causes? How did I get it? Over the next three or four days these questions would be answered.
According to the Lymphoma Research Foundation, lymphoma is a general term covering a wide variety of cancers. These cancers develop when an error occurs during one of the transitional phases of a lymphocyte. The results are abnormal cells. These abnormal cells can accumulate in two ways; they can either duplicate faster than normal cells or live longer. The rapid abnormal accumulation causes a tumor to develop. Most lymphomas are classified as Hodgkin’s disease or non-Hodgkin’s lymphoma (NHL). Both are serious conditions that can be difficult to detect. They are elusive because many of the symptoms of lymphoma are common to less threatening illnesses. 1
What are the major signs and symptoms of lymphoma? The most common indicator is a painless swelling of the lymph nodes located in either the neck or armpit. In addition, swelling of the lymph nodes may also occur in the chest, abdomen, or pelvis. It is possible, but uncommon, for a patient to experience no swelling of the lymph nodes. Other symptoms include fever, night sweats, rapid unexplained weight loss, constant fatigue, or itching. These symptoms are not a cause for panic. Many common illnesses such as an infection, the flu, or a cold will present the same signs. Usually there is no pain involved with preliminary symptoms, especially if the lymphoma is in the early stages.
So, what explained my symptoms? The answer was more than interesting; it was vital. My cancer was not in an advanced stage thank God; however, the tumor was enormous, filling most of my chest cavity. Unlike other cancers, lymphomas do not invade organs; they push against them. In this case the tumor was exerting pressure on my trachea, which is responsible for transporting air to the lungs. This pressure was the cause of my severe chest pains and shortness of breath. In addition to the tracheal pressure, the tumor had shifted my esophagus. Normally it is vertical, allowing ease of movement through the digestive tract. In my case, an elliptical curve had been introduced to the digestive path making it very difficult to swallow. This obstruction caused regular violent choking episodes. Four months prior to my diagnosis I had gastrointestinal diagnostic procedures performed. They failed to detect the abnormality. An enlarged lymph node caused the pain in my neck and shoulder. Pressure on a nerve caused by an enlarged node can cause pain or even paralysis.
Once I understood my symptoms, I wanted to know what caused the disease. I wasn’t a smoker. I didn’t take drugs. I was a strong, virile, young man in perfect health. I could bench press 250 pounds and carry a half-keg of beer around on my shoulder. How did I get cancer?
In truth there is no simple answer. The number of lymphoma cases has increased significantly over the last twenty years. Medical experts cannot explain why one person gets lymphoma rather than another. They do know that it is not caused by injury, nor is it contagious. By studying patterns of cancer in the population, researchers have found certain characteristics more common to people diagnosed with lymphoma. It is important to know that most individuals whose medical history fits that pattern will not be diagnosed with lymphoma. Furthermore many who are diagnosed will not demonstrate any of the identified risk factors.
According to the National Cancer Institute’s booklet “What You Need to Know About Non-Hodgkin’s Lymphoma” some of the risk factors associated with this disease are sex and age, weakened immune systems, viruses, and environmental conditions. The chances of being diagnosed with lymphoma increase with age and are more common in men than in woman. Lymphoma is seen more often among people with inherited immune deficiencies, autoimmune diseases, and HIV/AIDS. In addition there is an increased risk for patients that are post organ transplant and taking immunosuppressant medications. There are certain viruses, that if contracted, increase the probability of developing lymphoma. Human T-lymphotropic virus type I (HTLV-1) and Epstein Barr are two examples of such infectious agents. People who work extensively with or are exposed to chemicals also increase their chances of developing cancer. Examples of carcinogenic (meaning cancer causing) chemicals are pesticides, solvents, and fertilizers.
In addition to the risk factors listed above, genetics also plays its part. 2
It is now known that all cancers begin as a mutation in the genetic material. According to Miller and his colleagues at the National Institute of Health, in every group incidence rates increase with age, however the magnitude of this increase varies by racial/ethnic group. For example, from ages 30-54 years to ages 70 years and older, the incidence of non- Hodgkin's lymphoma increases about five-fold among white non-Hispanic men, but eleven-fold among Filipino men. Among women, the comparable rates increase eight-fold among white non-Hispanics, but sixteen-fold among Filipinos. These differences reflect high incidence rates among older Filipinos, similar to those of white non- Hispanics. Finally, patients who have received chemotherapy or radiation treatment for previous cancers run a slightly greater risk of developing lymphoma. Now that we have an idea of the risk factors of lymphoma, I think it is important to understand the difference between the two major forms of the disease. 3
What is the difference between Hodgkin’s disease and non-Hodgkin’s lymphoma? The answer is simple but not insignificant. There is one way to differentiate between the diseases. In most cases of Hodgkin’s disease, a particular cell known as a Reed Sternberg cell is found in the biopsies. A biopsy is a surgical procedure where a sample of the tumor is extracted and extensively tested for cell makeup. On the surface the difference may seem minor, but for the patient it could mean all the difference in the world. According to Dr. John Miller, my oncologist at Fairfax-Prince William Hematology Oncology, Hodgkin’s disease is easier to treat, less likely to reoccur, and far less fatal. Non-Hodgkin’s lymphoma requires a more aggressive approach to treatment, has a reoccurrence rate of greater than 50 percent, and if not diagnosed in the early stages, it can be fatal. Big difference!
Once Dr. Miller had provided us with a general understanding of the lymphoma family of cancers, it was time to obtain a specific diagnosis. I briefly mentioned biopsies as a method for identifying a specific type of cancer; however, before the biopsy is performed other diagnostic measures will be utilized. During the initial visit to the oncologist’s office, a physical examination will be performed. The doctor will be looking for swollen lymph nodes throughout the lymphatic system. What is the lymphatic system? The lymphatic system is a complex network of organs and vessels that helps filter out viruses, bacteria, and fungi. The major components of the lymphatic system are the bone marrow, spleen, thymus gland, lymph nodes, tonsils, and appendix.
According to information published in the CancerBACUP booklet “Understanding Non-Hodgkin’s Lymphoma” circulating through the lymphatic vessels is a colorless fluid called lymph, which contains lymphocytes. These are a type of white blood cell and are an essential part of the body's defense against infection and disease. There are two main types of lymphocyte: B-Cells and T-Cells. All lymphocytes originate in the bone marrow as immature cells called stem cells. Lymphocytes that 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. T-Cells and B-Cells are crucial in our exploration of the various types of lymphoma. These two types of cells are used to identify and classify over forty different types of lymphomas. 4
After a physical exam, the doctor may wish to order additional testing to confirm the diagnosis. In most cases the final diagnosis will be obtained through a biopsy. Your physician may elect for further blood tests, imaging procedures, a bone marrow sampling, or a cerebrospinal fluid analysis. The bone marrow and cerebrospinal examination are less likely to be used during initial diagnosis, but they are crucial to determining the stage of the disease.
In my case, a biopsy was performed to determine the cellular composition of the mass. After extensive analysis of the tissue sample by a qualified pathologist, a final diagnosis was made: non-Hodgkin’s lymphoma, diffuse large cell. It wasn’t the greatest news in the world, but it was a huge relief. Diffuse large cell non-Hodgkin’s lymphoma falls within the B-Cell classification. It is the T-Cell family of non-Hodgkin’s lymphomas that pose the greatest risk of fatality. It was going to be a rough road, but I had a good chance at remission. Remission is medical jargon which means the cancer is gone for now, but there is a chance that it may come back. Its use protects the doctors from being sued for falsely claiming they “cured” you. To date there are no cures for cancer.
What exactly are B-cell and T-cell lymphomas? Simply stated, B-cell lymphomas are those where cell mutation occurs during the life cycle of a type B lymphocyte, while T-cell lymphoma mutations occur during the life cycle of type T lymphocytes. The chart on page 9 attempts to summarize the types of malignancies that can occur during the various stages of cell maturation. Unfortunately, a similar mapping for T-cell development and potential malignancies has not been identified.
There are other ways to classify non-Hodgkin’s lymphomas. Aggressive lymphomas grow very fast, but are responsive to traditional methods of treatment. Indolent lymphomas develop at a slower pace and often require a more progressive approach to treatment. Follicular lymphomas account for a large percentage of cases in the United States, largely due to its high incidence rate in aging men and women. According to information available at www.lymphomamaininfo.net, large cell lymphomas are aggressive malignancies with a tendency to metastasize. The majority eventually demonstrate some involvement outside the lymph nodes, to include the gastrointestinal tract, testes, thyroid, skin, breast, central nervous system or bone. Although extra-nodal involvement is more common in large cell lymphomas than in follicular lymphomas, the bone marrow is involved only about 10% of the time.
Many lymphomas can be further classified as being AIDS related. Individuals with suppressed immune systems are susceptible to developing non-Hodgkin’s lymphoma. The lymphomas most often seen in HIV patients are Large Cell Immunoblastic, Small Non-Cleaved Cell, Primary Central Nervous System (PCNSL), and Hodgkin’s disease. 5
So, what is meant by the “stage” of a lymphoma? Staging refers to the process of accessing a patient’s condition to determine the progression of a malignancy. This process is crucial in determining the patient’s treatment, long-term outlook, and survival rate. Should the patient have surgery, chemotherapy, radiation, or combination therapy? What chemotherapy regime will be used? Has the disease progressed beyond treatment? These types of questions are answered throughout the staging process.
What does an oncologist look for when determining the stage of a disease? Primarily he or she is looking for three things: the number of lymph nodes affected, their location in respect to the diaphragm, and the involvement of bone marrow, the spleen, or organs outside the lymphatic system. The most common imaging procedures performed during staging are chest x-rays and CT scans of the chest, abdomen, and pelvis. Blood tests that provide information regarding liver and kidney function are used to decide which chemotherapy drugs will be administered and whether a bone marrow aspiration or lumbar puncture is needed. When a bone marrow aspiration is performed the physician inserts a needle into each hip extracting samples of bone marrow for analysis. Similarly, when a lumbar puncture or spinal tap is performed the needle is inserted between two vertebrae and spinal fluid is removed. Results from the bone marrow aspiration and lumbar puncture will show whether or not the disease has spread to either the bone marrow or central nervous system.
What did I have done? I had all of the above. Most of the procedures were relatively painless and easy to undergo, except one. Normally my threshold for pain is superfluous, but I cried like a baby during the bone marrow aspiration. I hope I never have to experience that joy again. I couldn’t begin to put into words how painful it was. I worked for an oncology office several years ago and often patients asked me what the procedure was like. Hoping to ease their concerns I would lie about it. The funny thing was half the patients would come out of the exam room stating that is wasn’t as bad as they expected. I couldn’t believe it. Never underestimate the power of the mind. Without it many would have trouble coping with their disease. In truth, without it, I think less people would survive.
What are the various stages of lymphoma? It depends on who the patient is. The staging system used for children is different than that used for adults. Most often the St. Jude Children’s Research Hospital system is used for patients under the age of 18. Adult lymphomas are usually staged according to the Ann Arbor Staging System. The International Prognostic Index (IPI) was designed to further clarify lymphoma staging. The IPI predicts the possibility of recurrence and overall survival by considering factors such as age, stage of disease, overall health, number of disease locations other than the lymph nodes, and elevated lactate dehydrogenase (LDH) levels. According to the Oncology Channel website the Ann Arbor Staging System is the most popular system for classifying non-Hodgkin’s lymphoma. The Ann Arbor Staging groups are as follows:
• Stage 1: NHL is limited to one lymph node group (e.g., neck, underarm, groin, etc.) above or below the diaphragm, or NHL is in an organ or site other than the lymph nodes (extranodal) but has not spread to other organs or lymph nodes.
• Stage 2: NHL is limited to two lymph nodes on the same side of the diaphragm, or NHL is limited to one extranodal organ and has spread to one or more lymph node groups on the same side of the diaphragm.
• Stage 3: NHL is in two lymph node groups, with/without partial involvement of an extranodal organ or site above and below the diaphragm.
• Stage 4: NHL is extensive (diffuse) in one organ or site, with/without NHL in distant lymph nodes. 6a
Several different systems are available for staging lymphoma in children. The St. Jude Children’s Research Hospital system is perceived as the most popular method. This model separates patients on the basis of limited versus extensive disease. The Oncology Channel website lists the St. Jude Children’s Research Hospital system groupings are as follows:
• Stage 1: NHL is limited to one lymph node group (e.g., neck, underarm, groin, etc.) or tumor outside of the abdomen or mediastinum (middle chest).
• Stage 2: NHL is limited to one tumor with local lymph node involvement, or NHL is limited to two or more tumors or lymph node groups on the same side of the diaphragm, or NHL is limited to a primary tumor of the gastrointestinal tract with/without involvement of local lymph nodes.
• Stage 3: NHL includes tumors or lymph node groups on both sides of the diaphragm, or any primary NHL tumor within the thorax (trunk) or extensive NHL within the abdomen, or any NHL around the spine or outermost membrane of the brain and spinal cord (dura mater).
• Stage 4: NHL is in the bone marrow or central nervous system (CNS), with/without other sites of involvement. Bone marrow NHL is defined as 5% malignant cells in an otherwise normal bone marrow with normal blood counts and smears. By contrast, lymphoblastic lymphoma that produces more than 25% malignant cells in the bone marrow is defined as leukemia. 6b
After a patient has been assigned a stage, further categorization may be defined. This is done by adding the biologic grade of the disease; i.e. low, intermediate, or high grade. Other descriptive terms such as “bulky” versus “non-bulky” disease and the presence or absence of B symptoms may be used to fully describe a particular lymphoma. The following is a list of additional designations defined on the Oncology Channel website which are applicable to any of the four stages of Hodgkin’s or non-Hodgkin’s lymphoma:
• A – absent (no) symptoms
• B – presence of any of the following B symptoms: fever (greater than 101.5), drenching night sweats, unexplained weight loss of 10% or more within the last six months, or severe itching
• E – involvement of a single extranodal (other than the lymph nodes) site that directly adjoins or is next to the known nodal group
• X – presence of “bulky” disease, that is, a nodal mass whose greatest dimension is more than 10 centimeters in size, and/or a widening of the mediastinum (middle chest) by more than one-third.
• CS – clinical stage as obtained by doctor’s examinations and tests
• PS – pathological stage as obtained by exploratory laparotomy (surgery performed through an abdominal incision) with splenectomy (surgical removal of the spleen). 6c
Here is an example to help explain categorization: Stage 2BX, high-grade non-Hodgkin’s lymphoma = non-Hodgkin’s lymphoma in which the disease is limited to two lymph node groups on the same side of the diaphragm (e.g., neck, underarm); the lymphoma is high-grade, with bulky disease and the presence of B symptoms.
After the stage of a disease has been determined, it is time to consider treatment options. There are numerous factors to consider when deciding on appropriate treatment plans. The type of disease, stage, location, growth rate of the tumor, present symptoms, use of surgery during diagnosis, and pregnancy must all be considered. Treatment plans for children will vary depending on the age of the child, physical development, and sexual maturity.
There are several types of treatment available to include chemotherapy, radiation therapy, stem cell transplant (SCT), biological or immunotherapy, surgery, steroid therapy, clinical trails, and the “watch and wait” approach. These treatments are administered in a variety of combinations. Each method has its pros and cons. It is a good idea to seek a second opinion before entering into a specific treatment program. In some cases the patient’s insurance company may require it. A second opinion is a great way to explore all your treatment options. Approaches to treatment can and will vary from physician to physician. It is important to ask questions and understand why the oncologist recommends a particular treatment plan. In the end it is up to you to decide which treatment plan to use. The oncologist will make his opinion known and strongly urge you to follow his recommendations, but you must be comfortable with the decision. It is your body and your life at stake. Be informed!
What is chemotherapy? Chemotherapy refers to the use of cancer killing drugs to treat disease. These drugs can be administered intravenously (injected into the veins), orally (taken by mouth), intramuscularly (injected into the muscle), subcutaneously (injected under the skin), or intrathecally (injected into the cerebrospinal fluid). These drugs destroy cancer cells by preventing them from growing and dividing rapidly. Many normal cells in the body exhibit similar behavior to cancer cells and therefore are damaged by chemotherapy. Among these types of cells are hair follicles, red and white blood cells, platelets, and cells that line the gastrointestinal system. Damage to these cells results in various side effects.
Lymphoma patients are often diagnosed with widespread disease; therefore chemotherapy is the cornerstone of treatment. The methods used to administer chemotherapy allow the drugs to flow throughout the body seeking and destroying cancer cells. The largest obstacle to successfully treating a particular lymphoma is drug resistance. Some tumor cells are resistant to certain drugs before treatment begins and others develop a resistance to the drugs over a period of prolonged exposure. Fortunately, new families of cancer fighting agents are being developed every year to overcome this obstacle.
There are hundreds of chemotherapy regimens. Many of the regimens used to treat lymphoma are a recombination of the CHOP therapy with additional agents, different timing, or different doses. Dose and schedule have a significant impact on tumor response. Let’s take a closer look at chemotherapy treatment by discussing my experience. After staging was complete, it was decided that PROMACE-cytaBOM would be the best treatment plan for my diagnosis. This chemo regime is used to treat fast-growing early stage (Stage1 or Stage2) non-Hodgkin’s lymphoma. My oncologist referred to it as sending out the Green Berets. It was a very aggressive combination therapy treatment plan. My therapy was broken up into three-week cycles and was scheduled to last eighteen weeks (six cycles). Most chemotherapy treatment plans are broken up into cycles. Each cycle has a treatment phase and a recovery phase. How long each phase is depends on the type of disease and the patient’s reactions to treatment. In my case, during the first week of the cycle I was treated with one set of drugs intravenously over a six-hour period. The first group of drugs was PROMACE – PRednisOne, Methotrexate, Adriamycin, Cytoxin, and Etoposide. The second week I was given a second set of drugs intravenously over a four-hour period. The second group of drugs was cytaBOM – cytarabine, Bleomycin, Oncovin, and Methotrexate with leucovorin rescue. The third week I did not receive any treatment. My body was allowed to recover and blood work was done. Then the cycle was repeated.
I was given chemotherapy as an outpatient. Depending on the drugs administered, it is possible that you may be required to stay at the hospital overnight. Prednisone is a steroid that is taken orally. It was a significant component to my treatment plan because oral steroid therapy greatly reduces the side effects associated with these powerful drugs. It does have its drawbacks. Your appetite increases significantly and if you’re not careful you can “plump up”. In addition, Prednisone can cause an acne-like rash to develop on your back, chest, and shoulders. Swelling of the face is another common side effect. It is often referred to as moon face because your features become rounded. You may have noticed that Methotrexate was listed in both drug groups, but it was given once per cycle during week two.
Before each treatment was allowed to take place, blood work had to be done to determine if my white blood cell count was at an adequate level for treatment. This is common to all patients undergoing chemotherapy. As we discussed earlier, chemotherapy kills healthy white blood cells. Until your body has replenished a significant percentage of those white blood cells, further chemotherapy treatment cannot be given. Your body must be ready to fight infection and endure side effects while the drugs pass through your body. If your white blood cell counts falls too low you run the risk of developing a neutropenic fever (fever induced by low white cell levels). This almost always ends up in hospitalization. You don’t want that. Once adequate white blood cell counts can be obtained, treatment is allowed to proceed.
Consumption of liquid is essential during treatment. The primary method for eliminating chemotherapy drugs from your system is through urination. Often fluids will be given before and after the chemotherapy has been administered. This is done to ensure proper hydration and to assist the beginning of the elimination process. In addition to fluids, anti-nausea medication is often given intravenously prior to chemotherapy. Not all chemo drugs can be eliminated through urination. Of all the drugs I received, Methotrexate was the most dangerous. Unlike the other medications, Methotrexate continues to work until you stop it. If proper measures are not taken to curtail its efforts, it will continue to work until it kills you. This is where the leucovorin rescue comes in. This medication is taken orally to suspend the Methotrexate. Many drugs can cause allergic reactions in a patient. Often these reactions can be avoided if the patient is pre-medicated with Benadryl; however in some cases it is necessary to change treatment plans because of drug reactions.
The process of administering chemotherapy can have a significant impact on the body of a patient. Over time, your veins harden and become less pronounced making it difficult to find a vein capable of handling the insertion of a catheter. Catheters are small plastic tubes inserted into a vein by a needle allowing the introduction of chemotherapy drugs into the blood stream. Central venous catheters are a special type of intravenous catheter that is usually inserted in the operating room. They are threaded through a vein in the neck or a vein in the upper chest under the collarbone into a large central vein in the chest (the superior vena cava). There are two general types of catheters, those that are permanently placed under the skin with no catheter coming out through the skin (an internal catheter), or those that come out through the skin (the external catheter).
The major decisions that an individual and his or her physician usually face are when and if to place a catheter and which type to use. The placement of a central venous catheter is almost always done as an outpatient procedure with local anesthetic and intravenous sedation. The procedure is relatively safe with few short term or long term complications. Short-term complications are related to placement of the needle into the vein through which the catheter is threaded. The needle may puncture the lung or cause bleeding into the chest; however these complications are rare. Long-term complications include clotting of the catheter and catheter infections. These are much more common.
The reasons to consider placing a catheter can be very complex. Basically, a catheter is considered if a person requires frequent or continuous injections of medications or fluids for nutritional support. The advantage of a permanent central catheter is that it avoids the need for frequent catheters in the smaller veins of the arm. Many of the medications and nutritional fluids a person requires are too damaging to these smaller veins. The most common medications that require central venous catheters are those used to provide intravenous nutrition. The catheters can also be used to obtain blood samples and administer blood transfusions. I was fortunate in that I did not need a central line (central venous catheter). I was quite vascular and able to receive treatments using the veins in my arms. It started to get difficult towards the end of my therapy, but I made it through it.
So what are the short and long term side effects of chemotherapy? The side effects of chemotherapy depend on the drugs received and the quantity of the doses. Side effects will also vary from person to person. In the short term, patients may experience hair loss; mouth sores; low red blood, white blood cell, or platelet counts; nausea; vomiting; diarrhea; loss of appetite; loss of sex drive; dizziness; or darkening of the skin and fingernails. These symptoms often come and go between treatments. They are quick to present and quick to subside, but can perpetuate until treatment is discontinued. Long-term side effects may include “Chemo Brain” (this term is used by cancer survivors to explain memory loss), numbing of the extremities (hands, feet, etc.), heart problems, lung problems, bone degeneration, and possible loss of fertility.
I did not experience many of these side effects. I did have occasionally fatigue and nausea, but it never lasted more than a day. My sex drive was not affected, however, there are some important facts to be aware of while on chemotherapy. It is not a good idea to have unprotected sex while undergoing treatment. Traces of chemotherapy drugs can be found in the semen and therefore can be transmitted to your partner during sexual intercourse. You do not want to introduce these drugs into the body of a healthy human being. In addition it is possible for chemotherapy to harm a developing fetus. Therefore the use of proper contraception is encouraged throughout treatment and for up to one year after.
As for the long-term side effects I did have one. Along with the possible effects on your sex drive, chemotherapy can have a lasting effect on your fertility. The loss of fertility may be short-term or permanent. In men, chemotherapy can reduce sperm count. Women may experience loss of menstruation, hot flashes, or vaginal dryness. The younger the patient is, the greater the chances of regaining fertility. Prior to treatment, my oncologist suggested that I pay a visit to the local sperm bank. There I would store my own healthy sperm for use in later years. Similarly women who want to have children in the future may wish to consider storing fertilized or unfertilized eggs. Prior to chemotherapy, semen analysis revealed normal healthy semen with an approximate sperm count of 300 million per drop. Similar analysis post chemotherapy yielded a total sperm count of 6. I was sterile. But, thanks to the good graces of God, my infertility was short lived. Two years later I was retested. My counts were normal.
As I mentioned before, there are several other treatment methods available, most of which I did not experience first hand. So far, we have discussed chemotherapy and steroid therapy. What about biological therapies? According to the Lymphoma Research Foundation, biologic therapy (including immunotherapy) is a treatment that uses forms of the body's own disease-fighting capabilities to treat cancer or to lessen the side effects caused by cancer treatments. These therapies can boost, direct, or restore the natural defenses against disease. Examples of biologic therapies include monoclonal antibodies, radioimmunotherapies, interferons, vaccines, antisense therapies, anti-angiogenesis therapies, and gene therapies. These are the cancer treatments of the future, many of which are deep in the clinical trial phase. 7
What are clinical trials? Many people with lymphoma or other cancers participate in clinical trials. Clinical trials are research studies where physicians attempt to learn about the effectiveness and side effects of new treatments. Sometimes all participants receive the new treatment; other times a comparison between new and standard therapies is conducted. Often physicians may compare one standard treatment with another. This type of research can led to significant advances in the treatment of cancer. Each achievement brings researchers closer to the eventual control of these diseases.
Doctors are studying radiation therapy, new ways of giving chemotherapy, new drugs and drug combinations, biological therapies, bone marrow transplantation, peripheral blood stem cell transplantation, and new ways of combining various types of treatment. Some studies are designed to find ways to reduce the side effects of treatment and to improve the patient's quality of life. People who take part in these studies have the first chance to benefit from treatments that have shown promise in earlier research. While clinical trials may pose risks for the people who take part, they also make an important contribution to medical science.
What are bone marrow and stem cell transplants? Bone marrow transplants and peripheral blood stem cell transplants are moving from the clinical trial area to mainstream treatment methods for both Hodgkin’s disease and Medium/High grade non-Hodgkin's lymphoma. These transplants are often used if a patient relapses after undergoing treatment with conventional chemotherapies.
Bone marrow transplantation has been used to treat lymphoma for over ten years; much of that time on a trial basis, but now much more in the mainstream. Sometimes lymphoma becomes resistant to treatment with radiation therapy or chemotherapy. Very high doses of chemotherapy may then be used to treat the cancer. Because the high doses of chemotherapy can destroy the patient's bone marrow, marrow is taken from the bones before treatment. The marrow is then frozen, and the patient is given high-dose chemotherapy with or without radiation therapy to treat the cancer. The marrow that was taken out is then thawed and given back through a needle in a vein to replace the marrow that was destroyed. This type of transplant is called an autologous transplant. If the marrow given is taken from another person, the transplant is called an allogeneic transplant. Similarly, with a peripheral blood stem cell transplant, a patient's blood is passed through a machine that removes the stem cells (immature cells from which all blood cells develop) and then returns the blood to the body. This procedure is called apheresis and usually takes 3 or 4 hours over one or more days to complete. The stem cells may be treated with drugs to kill any cancer cells and then frozen until they are transplanted back to the patient. This procedure may be done alone or with an autologous bone marrow transplant. My wife’s aunt received a stem-cell transplant a few years ago at Hershey Medical Center in Pennsylvania after leaning that her breast cancer had reoccurred. The procedure nearly killed her. I remember visiting her while she was still in the hospital. I did not recognize her. She never made it out of the hospital. She recovered from the stem cell transplant and was doing quite well, but she developed an infection and died of sepsis. God forbid, if I were to reoccur, I would have a hard time agreeing to a stem cell transplant because of what she experienced.
What about watch and wait? What kind of treatment is that? Often in the early stages of a disease there is the potential for suspicious finding to raise the concerns of your health care providers. However, diagnostic procedures may not produce conclusive evidence that the findings are malignant. In such cases, the only thing you can do is watch it and wait. You don’t want to arbitrarily begin treatment without being sure. No one wants to go through chemo, radiation, or surgery if they don’t have to. The spouse of a close friend of ours recently experienced this agonizing process. She went in for a routine mammogram and her doctors noticed a spot in one of her breasts. They performed a few tests and were unable to determine if the spot was a tumor. The watch and wait process began. For months they monitored her condition. She went in to the office regularly and finally after five months she was diagnosed with breast cancer. Fortunately, it was caught early. She lost her breast, but she did not lose her life.
By now, you’re probably wondering what happened with my cancer? After completing six cycles of chemotherapy I was asked to repeat the chest x-rays and CT of the chest, abdomen, and pelvis. Naturally, many of the same tests used to diagnose a condition can also be used to evaluate the progression of treatment. Dr. Miller wanted to see how effective the chemotherapy had been. After receiving the radiologist reports he called us into his office. “I have good news”, he said. “The cancer is in remission!” I couldn’t believe it. I really thought I was in for a much longer struggle, but it was over. If my memory serves me right, a week or so had passed and I was flying high. I had a whole new outlook on life. If I could beat cancer, I could beat anything. I had joined the ranks of the few and the proud. I, Todd Eric Siuta, was a cancer survivor. But it wasn’t the end. The cancer was in remission and I was done with chemotherapy, but Dr. Miller strongly recommended I undergo radiation therapy as well. Not knowing what it was I was devastated. Here I thought it was all over and now I had to do this. I had remained strong and positive for the five months never once doubting for a minute that I would survive, but this was enough to shatter my spirit. Boy was I foolish. Compared to everything else, radiation therapy was a breeze.
What is radiation therapy? Radiation therapy is the use of high-energy rays to kill cancer cells and shrink tumors. Unlike chemotherapy, radiation is a local focused treatment. A specific area called a field or port is identified and treatment is administered to that area. The goal of radiation therapy is to deliver the maximum effective dose to a specific area while protecting the surrounding healthy tissue as much as possible. A shield or blocking device may be used to protect other areas outside the radiation port. Radiation is commonly used for early stage lymphomas and may be given in addition to chemotherapy. The length of the treatment depends on the type and size of the lymphoma. My experience with radiation is a perfect example of what a typical patient would experience. When I first met with the radiation oncologist he performed a physical examination in the office and reviewed all of my scans, diagnostic x-rays, blood tests, pathology slides, and surgical reports. With this information he was able to determine what areas of my body to treat. The next step was to perform what is referred to as a simulation. A simulation is a procedure used to identify the precise ports or treatment fields. This process can take anywhere from one to two hours. I had to lie very still on a table while the technicians used a special x-ray machine to determine the exact treatment location. Once the treatment grid had been identified, the technician used permanent ink and a pinprick to mark the horizontal and vertical reference points used to align the device that administer the therapy. Using the information from my medical history and the simulation procedure, a specific dosage was calculated. After determining the total dosage it was divided into approximately nineteen treatments to be given over a four-week period. My appointments were Monday through Friday, each lasting about ten to fifteen minutes. The best way to describe the treatment is its exactly like getting a chest x-ray except they leave the ray beam turned on for fifteen to thirty seconds. I was treated from two sides. The machine would first deliver a dose to my chest and then rotate 180 and treat the same field from the back. Prior to administering treatment, the technician would leave the room, but I could see her through a large window just outside the room. I felt like the chimps in the movie Project X. The treatment is painless. You cannot see the ray when the treatment is being administered. Ninety-nine percent of the time you don’t even know your being treated for anything.
There are side effects that can be associated with radiation therapy, although true complications are rare with modern treatments. The most common side effect of radiation therapy is fatigue. Rest is important, but the radiation oncologist will encourage you to stay as active as you can. You may experience loss of appetite. It is common to experience hair loss in the treatment area. In my case I had little to no hair on my chest at that time. Instead of causing it to fall out, it kept any hair from growing in that area over the next year or two. You will experience red, dry, tender, and itchy irritation of the skin in the treated area. It looks and feels like a sunburn. In some cases you may see a permanent darkening or bronzing of the skin. Radiation to the mouth may destroy the salivary glands. Radiation to the chest may cause a dry, sore throat, and trouble swallowing. This may last up to six months. In young women, radiation to this area may increase their chances of developing breast cancer. Radiation to the abdomen and pelvis can cause nausea, vomiting, diarrhea, or urinary discomfort. Most often your physician can prescribe a dietary change or medication to ease these symptom. In addition to these symptoms, radiation to this area may cause temporary or permanent infertility. The same precautions observed when receiving chemotherapy are taken into account when treating the lower body with radiation. Other long-term effects may include lung fibrosis, gastrointestinal problems, neurological problems, heart problems, weakening of the bones, and problems with thyroid functionality. There is also the possibility of interference with the growth of bones and soft tissue primarily in children.
Once again I exhibited very few side effects from radiation therapy. I did experience reddening of the skin in the treatment area and lasting problems with gastrointestinal reflux, but for the most part my radiation experience was both positive and enlightening.
On June 15, 1994, I finished my last radiation treatment. At last, my battle with cancer had finally come to an end. The journey only lasted six months, but its effect will last a lifetime. I visit my oncologist regularly and keep a close watch on my health. I urge each and every one of you to do the same. If there is one thing I’ve learned from this experience it’s that cancer does not discriminate. It can happen to anyone at anytime no matter who you are. I ask you to please know your body; go to your doctor regularly; get a physical; asked questions. If cancer runs in your family, find out what steps you can take to prevent it or check to see what kinds of tests can be done to determine your risk for developing it. Most cancers are highly treatable, but they must be caught early!
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