- The doctors did not predict more than a year of life.
- Novel treatment cost a huge amount.
- Optimism helps stay happy and healthy.
Alar Tupp had been in the University of Tartu clinic for a week, the doctors had examined him every way, but found nothing. Until a young doctor said there was another option left: capsule endoscopy.
The tiny swallowed camera finally discovered what they were looking for. But the result was not pleasant. «It looks really bad,» Tupp (53) recalled the doctors’ conclusion. The doctors found melanoma in his small intestine. The cancer had already progressed to the fourth stage.
Alar Tupp, the father of three children and now the grandfather of six, received the diagnosis eight and a half years ago. He is currently going to work from Mustvee near Lake Peipsi, organizing the maintenance of gas pipelines between Tartu and Rakvere. And he confirms: «Nothing has changed in my life. Life is going on as before. Only there is less excitement. I take it easy, reasonably.»
Only he is not as strong as before the disease. In the old days, according to him, he was able to split the toughest logs with an axe, but recently he had to buy a splitter machine. What sets Alar Tupp apart from many others who have been diagnosed with cancer and are battling it is his positive and optimistic outlook. He believes that this is why he has endured.
«I do not take illnesses seriously,» he says. «If it is cancer, then it is cancer. It’s like a cold.»
Alar Tupp realized that something was wrong with his health when he was 45 and felt that he was starting to get weak. His strength disappeared; his face turned pale all the time. The family doctor sent him to Jõgeva Hospital. He received a transfusion of new fresh blood there.
«I can understand the athletes who receive blood doping,» says Tupp. I got a huge strength back. It really works!» But the strength did not last long. He soon felt worse again. «The crab got more food [from the blood transfusion], had a better appetite,» he describes it with humor, which often illustrates his other discussions. Then it was time to go to the hospital in Tartu and it became clear at last.
The doctors said after the examination that he needs immediate surgery.
«I still didn’t take it seriously,» says Tupp. On the contrary, he tried to see the silver lining and hoped that cancer would help him lose weight.
Alar Tupp’s wife Lea recalls that an experienced surgeon had given her husband eight to ten months to live after the surgery which removed up to five centimeters of his small intestine. A year at best.
This was the first time Alar Tupp began to suspect that is it really….
He did not just wait for the end. He was admitted to a study where he received tablets during the experimental treatment. But they did not help. He also received intravenous chemotherapy.
«It wasn’t a lot of fun,» he recalls. «Let’s just say it was tolerable. I still walked out of the hospital on my own two feet.»
But chemotherapy did not work as expected either.
Tupp’s doctor Peeter Padrik, oncologist at the University of Tartu clinic, knew about another opportunity, a new melanoma drug called Yervoy. But there was one big hurdle: a course of treatment with Yervoy cost 144,000 euros. And the health insurance fund did not reimburse it.
«You could sell the house, the car and the relatives and still come up short,» says Tupp.
An excessive amount
He probably would not have received the treatment seven years ago without the support of Estonia’s first private cancer treatment support fund, The Gift of Life. «The foundation was still quite young at that time, it had been operating for almost a year,» recalls its founder, Toivo Tänavsuu, who is now studying to be an oncologist at the University of Tartu. «The amount Alar needed to treat it seemed colossal.»
144,000 euros was twice as much as previous year’s total budget of The Gift of Life’s support.
Yet the fund managed to raise 75,000 euros to support Tupp’s treatment. The patient himself contributed 10,000 euros. That would not have been enough, but the fund was able to get a big discount from the European office of the pharmaceutical company Bristol Myers in France, which happens quite rarely.
The treatment could begin. Drop by drop – one drop costs about a hundred euros – the drug entered his vein. There were a total of four drip courses at intervals of a couple of weeks.
However, there was no guarantee that the treatment would work. Study results of that time showed that roughly one in five patients with the same type of cancer as Tupp had, who were treated with Yervoy managed to keep the disease under control for five years or more.
Tupp begins its eighth year. And the disease remains under control as the examinations every six months confirm. Precisely that – under control. He knows that it has not gone anywhere but does not let the knowledge bother him.
«Alar is a rather calm person,» says his wife Lea, who works as a salesperson at the Mustvee building materials center. According to her, she sometimes even wonders how her husband manages to be that strong and optimistic.
Acquaintances gave up
With the exception of Alar Tupp’s post-treatment weight gain of 20 kilograms and the resulting higher blood pressure, as well as early-stage lymphoma in his armpit detected in a computer examination years ago, which was removed by surgery, he estimates his health as generally average. «You just have to enjoy life,» he says.
During his time in the hospital, he decided that as long as one can manage two things – eat and go to bathroom without help – life is all right.
Maintaining optimism is the key to going on with one’s life, Alar Tupp assures. He had two acquaintances, one with stomach cancer and the other with prostate cancer. As soon as they heard about the diagnosis, they both became depressed and began to drink to relieve their anxiety. Although they received treatment, both men died a few years later.
«This is where the faith comes in,» says Lea. The belief that it is possible to survive and live on.
«Cancer is not a death sentence if you believe in yourself,» Alar Tupp confirms. «If you do not believe it yourself, you are a goner.»
Alar Tupp sits in his white Dacia on Friday afternoon and drives to work. His boss had called and said that some pipes needed replacing. «When you are active, you have no time to think of bad things,» he says.
A sauna session is planned for the weekend. He built the sauna in a garage behind the house. When grandchildren come to visit him, «the life is as good as it gets,» he says.
Tiring experience in Russia
Like everyone who has been diagnosed with cancer, Alar Tupp has wondered what might have caused the disease. He suggests two factors, admitting that these are mere conjectures.
In the second half of the 1980s, he served for two years in the Novaya Zemlya archipelago in the Arctic Ocean, home to the Soviet Union’s nuclear training ground since the 1950s. Although Tupp spent most of his service in the kaptyorka or supplies room, radioactive clouds had repeatedly moved across the islands, although no one talked about it. It is said that a large part of the islands are still radioactively contaminated.
In the 1990s Tupp worked as a cook in construction sites in Moscow. His job was to prepare food for 80 men. There were 14-hour workdays that lasted for six weeks without any days off. Then he returned home for ten days before starting the next six-week cycle. This type of work lasted two years. «It was tiring,» Tupp says.
The aid which extends life
The cancer treatment fund The Gift of Life, established in 2014, has supported the treatment of more than 1,200 Estonia’s residents. The youngest of them was 5 years old and the oldest 83.
35-40 percent of people who were helped by the fund have lived at least one additional year. Several people have fully recovered with the help of the fund.
As of yesterday, The Gift of Life fund had raised almost three and a half million euros, of which slightly more than two and a half million came from donors.
Until this spring, the fund received 25-30 support applications per month. According to the founder Toivo Tänavsuu, the number of applicants has doubled in recent months.