Hodgkin lymphoma: symptoms, chemotherapy, nutrition and family support
28 Jan 2020
Isabelle's son was only 23 years old when he was diagnosed with Hodgkin's lymphoma. His mother agreed to share about the symptoms and treatments her son experienced, as well as the role and place that relatives have been given throughout the treatment.
Hello, thank you for agreeing to share your testimony. Could you please introduce yourself in a few lines?
I am a 54 year-old woman, and I am an editor. I am married and have 3 grown children. I enjoy reading, cooking, taking care of my garden, making jewelry, growing succulent plants and miniature cacti, and writing.
What were the initial symptoms your son experienced with Hodgkin's lymphoma?
My son was 23 years old when he first experienced the following symptoms:
- Weight loss
- Night sweats
- Difficulty breathing
How was the diagnosis made?
The diagnosis was quite quick. Faced with all these symptoms, we went to see a family doctor, who sent my son for X-rays. What the doctor saw in the X-rays did not alarm him, so the doctor just gave him antibiotics and medication for his fever.
After having no improvement following 2-3 days of following treatment, we decided to consult a pulmonologist. As soon as he saw the x-rays, he told us that there was an abnormal mass at the level of the heart and lungs, and that he needed to determine what it was. He sent us to a laboratory for an analysis.
The next day, after reading the results, the doctor advised us to get a CT scan "as soon as possible." We were already very worried at this time because the lab had contacted us the day prior telling us that we should get the results quickly and to told us to go see pulmonologist as soon as we could.
How did you feel after the diagnosis was made?
I've never been more frightened in my life and I felt devastated. In addition, I felt alone because my husband had not been able to accompany me to hear the results. I went to the pulmonologist alone. The doctor looked carefully at the CDs. I think it took him at least 15-20 minutes to finally say what was wrong. During this time, I understood that something serious was going on, but I had no idea what the diagnosis was going to be.
After a long time, he said, "It's a tumor." When he said that I felt like he'd literally slapped me in the face.... I remember thinking to myself, my son's going to die....
The pulmonologist was kept his explanations very technical. He talked about biopsies, analysis, the need to do everything quickly, etc. A lot of technical terms, which I didn't understand at the time. After all that he told me "You have to keep moving" because he could see I was completely devastated... Out of all the things he told me, this was the only advice I could really understand, and the one that helped me face everything else.
When I got home, I had to tell my husband, my sick son, his two brothers... it was a difficult time. My son suspected it was something serious, and he was actually a bit relieved to know exactly what was going on.
The surgeon who did the biopsy was more reassuring, explaining that lymphomas were among the easiest cancers to treat and cure.
But there was no time to waste. The cancer was already Stage II, and my son was out of breath all the time, becoming increasingly tired.
What treatments did your son undergo?
He underwent ABVD chemotherapy + radiation therapy, all lasting 6 months.
Were these treatments effective?
After the first chemotherapy, the itching and fever disappeared, and my son was finally able to sleep. The treatments were very effective. There was no vomiting, but there was nausea. He had severe fatigue the first 2 days after chemotherapy. My son didn't have many side effects, and he didn't get many mouth sores.
I was very careful not to cook spicy food during this time and he was able to continue eating normally and regained his strength quickly.
What diet did he adopt during chemotherapy?
My son followed a high-fat diet with minimal carbohydrates (my son never enjoyed sweets or cakes...), few starches, fresh fruit whenever possible, lots of vegetables (carrots, celery, lamb's lettuce/corn salad), eggs, milk, yoghurt, cottage cheese, pork, salmon, grilled bacon with greens, and beans. Between each chemotherapy session, he ate almost everything. I took advantage of these periods to cook the dishes he wanted, anticipating the days after chemotherapy where he would lose his appetite, he would be very tired, and he would sleep a lot.
During chemotherapy sessions, the only foods that he could eat were cold dishes: yoghurt, fruit salad, raw vegetable salads, fresh fruit. It was impossible for him to eat hot dishes... he could not stand the smell of cooked food; it made him nauseous.
Later, he was able to prepare his own meals; he had always liked to cook. Since I didn't always know what he wanted to eat, I would leave food for him to cook when I was away: eggs, salad, meat, cheese... he prepared his own food depending on his appetite. I think by him continuing to do the things he loved, it subconsciously helped him face the disease, in his own way.
He joined a gym and began to exercising again, while still undergoing the chemotherapy because he felt like he was gaining weight after a few treatment sessions.... He would go on his own by foot; it was only about 15-20 minutes from home.
How is your son doing today?
He's doing very well. He has resumed his studies, exercise and sports, and is preparing to obtain his degree. After a year without studying, he was able to complete his end-of-year internship, which had been interrupted due to his illness.
He has now been in full remission for 3 years.
During this trial, did you feel sufficiently supported as a member of the patient's family? Were you recommended or offered psychological support, for example?
The hospital staff were so kind and a huge help. It was comforting to see that they "knew their stuff" on the technical side of things. The nurses told us where the infusions would be administered, how long they would last... They were cheerful, smiling, and efficient; they supported us a lot and that kept me from overreacting if there were hiccups.
No, I didn't get any psychological support and they didn't offer me any. However, we received help from people we didn't know before. A very kind gentleman shared his car and took us to the hospital for PET scans. He lived quite far away, an hour's drive away. We became friends later.
What advice would you give to a newly diagnosed young patient? And his parents?
First of all, it is important to bear in mind that if supposedly benign symptoms (cough, migraine, etc) just won't go away, you should go see a medical doctor as soon as you can, since they may be a sign of something more serious.
The doctor needs to make sure the patient is very clear about what's happening to them and inform them about what their treatment involves, and to talk about it together. When the patient is informed about his or her illness, he or she can help by providing clear answers to questions. It is also important to know that while undergoing treatment, anything can happen. Above all, the patient shouldn't obsess over side effects (hair loss, etc....). The hair will grow back and will look even better later! Take it from me. Also, it's important for the patient to stay physically active if his or her health state permits it, even gentle exercise and walking. Diet is also important; it is really at the heart of healing.
As parents, we tend to feel guilty because we think that if we had been more attentive, more present, or less busy at work, we could have done something sooner. It's very hard to kick these feelings of guilt, but we have to get over it for our children's sake. Blaming yourself does not and will not do anything to improve the situation or help your child... if anything it can make them feel worse.
The best thing is to move forward (find ways to be more present; how to help your child "enjoy life" even during chemotherapy sessions; and organise life at home, meals, sleeping arrangements, etc...). I always told myself, there's light at the end of the tunnel!