ECPC's member of the month August 2010 is:

MARIA KAROLIINA RÄISÄNEN (ABRALE, BRAZIL)

My Organisation

ABRALE - The Brazilian Lymphoma and Leukemia Society

ABRALE – the Brazilian Lymphoma and Leukemia Society, is a non-profit organization established in September 2002 by patients and their families.

MISSION - “To adequately inform and offer support to all patients with onco-hematological diseases, creating partnerships so that the best treatment is available to all patients in Brazil.”

ABRALE counts with the support of a volunteer Scientific Committee, made up of the best lymphoma and leukemia physicians in the country, who validate and guide the activities of the organization.

The organization also has Specialties Committees – psychology, nursing, nutrition, occupational therapy, dentistry, physical therapy and social services – which provide technical support to activities that require specific knowledge.

Through technical partnerships with international organizations such as The Leukemia and Lymphoma Society (USA), DKMS (Germany), ECPC (Italy) and Lymphoma Coalition (UK), as well as participation in international events such as the New Horizons in Treating Cancer Conference, ABRALE gets updated and exchanges experiences about the advances in treatment, thus renewing the technical support and inspiration for all those involved.

In the national context, in the advocacy area, ABRALE works ceaselessly to make the best treatments available to the whole population, cooperating with the Government in the improvement of health policies. For this purpose, periodical meetings are held with the Ministry of Health, the National Health Agency (ANS), the National Cancer Institute (INCA), and with the National Agency of Sanitary Surveillance (ANVISA), apart from interaction with several Medical Societies.

In the Latin-American context, ABRALE idealized the Latin Alliance, a network established in 2006 with the mission of promoting the empowerment, qualification and cooperation between institutions, to continuously improve the quality of life of patients with blood diseases in Latin America.

The Latin Alliance is currently made up of 56 organizations which support patients with hematological and onco-hematological diseases and works ceaselessly to professionalize and support the activities of its members thus helping them to achieve their institutional missions in a more effective way.

My story

I was born in Brazil, in 1977, to a Finnish father and Argentinean mother. I have lived in São Paulo, Brazil, for all my life.

At the end of 2003 I started feeling something was wrong with me, I was working as a commercial assistant at a Mexican sweets company and did not have the same energy as before, from one moment to the other I felt very tired and had horrible migraines.

In February 2004, during a huge sweet fair we participated in Germany I had shortness of breath and a stomach pain started bothering me. I thought it was just the stress of the previous months, years without vacation and the new food and was certain that after going back to Brazil to enjoy my one month holiday at the beach everything would go back to normal. But it didn’t.

I came back to Brazil, and after two days I still had the stomach pain. I was at the beach and my father took me to a hospital. The physician examined me and advised me to go urgently back to São Paulo. I knew immediately something was very wrong. In São Paulo, after an X-Ray and a CT scan came the news: there was a 7cm mass in my abdomen, I had cancer.

From the moment the tumor was discovered to precise diagnosis almost a month went through, a needle biopsy was done, it didn’t work and finally they had to open my abdomen to take a piece of the tumor. During this operation I had massive blood loss. I was diagnosed with a tumor called paraganglioma (it is in the family of neuroendocrine tumors) and it was located below the right kidney, embracing the vena cava. The protocol for this type of tumor is surgery - there are no drugs to treat it since it is a very rare type of tumor - but in my case, at that time doctors said it would be extremely risky to operate me because of the location of the tumor. Given this, my doctors decided to try treatments with drugs to try and shrink the tumor a bit to the point where it would be small enough to be operated. I started with 6 cycles of traditional chemotherapy, but it did not work. Then I went to Switzerland to try a treatment with a drug called Ytrium (nuclear medicine).

This also didn’t have any result. Then in 2005 I started having really high blood pressure, this was because the tumor excreted hormones in the blood that made the arterial pressure go up. Although the tumor wasn’t growing (it never got bigger during the time I had it) the risk of complications because of the high blood pressure was the most dangerous thing about the disease.

2005, 2006 and the first semester of 2007 I didn’t receive any treatment, just CT scans every 6 months to monitor the size of the tumor and a drug to control the blood pressure.

In October 2007 my blood pressure got out of control and started to get really high. At this point, there already was a nuclear medicine treatment similar to the one I took in Switzerland but with another drug available in Brazil, so I did three cycles with this drug. This treatment finally gave some kind of result, it did not shrink the tumor but really slowed down the tumor activity, ie. the amount of hormones that were excreted by the tumor in the blood decreased dramatically, and my blood pressure was controlled.

At the end of 2008 my oncologist decided to experiment another treatment, this time with an oral chemo drug used for brain tumors (temodal - themozolimide) combined with thalidomide. I took this treatment for 2 months, it didn’t work and my immunity was really affected, I had meningitis, then herpes zoster, it was horrible.

Finally, in May 2009, after another CT scan, my oncologist thought that the tumor became slightly smaller, a decrease of less than 10%, but he asked me to go and see a surgeon, one of the best in Brazil, and maybe he would be the person who could operate me. I went to see this surgeon, he was very direct and told me that either I would risk the operation and have a chance of being cured or there would be no future for me. I went to see another surgeon and the conclusion was that at that point it was riskier to stay with the tumor (although it was stable it was impossible to predict what could happen in the future) than to operate. So, I decided to operate, it was a huge and risky surgery, involved a preparation to block the hormones as much as possible to minimize the risk of a massive hormone discharge during manipulation in the surgery, I had blood transfusion during the procedure and a piece of my vena cava was cut out together with the tumor and replaced with a prosthesis. I recovered very well and after one month was able to get back to work. Now I have to do a CT scan every 4 months, and will have controls for the next 5 years, but the chance of having the same tumor again is the same as any other person.

I started working at ABRALE in March 2006. Before accepting the job, I was a bit concerned about working at an institution where I would be constantly hearing about cancer, but was advised by Merula Steagall, my boss and president of the organization, to give it a try because as opposed to what I was thinking, dealing with cancer everyday could be a good thing for me, I could turn an obstacle into work.

This turned out to be true and I started realizing it after attending the New Horizons conference in Budapest, in June 2006. After only 3 months of working in a patient support organization I remember arriving at the conference not knowing exactly what I was doing there or what to expect. But I came back with a feeling that everything was possible, I was marveled to see so many people who had cancer being active and working towards helping other patients. I saw people who had tougher stories than mine but who were full of energy and really working to improve treatments and quality of life of cancer patients. I realized I was not alone and that I could also do it. So, working in an organization that gave support to patients suffering from blood cancers, although it was not the same type of cancer I had, opened my mind and my eyes to a reality that I didn’t previously know, and was an essential element of my journey towards cure. I am grateful for this opportunity and now have even more energy for my job, without the burden of the disease.

During the time I was ill I did many other complementary therapies that helped a lot, especially in the emotional area such as meditation, healthy food, I went through several spiritual surgeries, took Bach florals, received reiki, read many of Deepak Chopra’s books, etc.

Of course the years I had to live with the disease were full of ups and downs but the most important thing for me was not to make the disease the central focus of my life, that is, I tried as much as possible to live a normal life and tried to face the part of the disease and all it involved (going to the doctors, doing cts, blood tests, etc) as one more thing I had to do and not the main thing. I didn’t ignore the disease but also didn’t pay exaggerated attention to it.  Also, I always believed that there would be a way out and I would be cured. I felt deep down inside me it was a process I had to go through, a learning process that would make me a better, stronger person, and I would only get cured after I learned everything I had to learn. I never lost my faith and I think that was determinant. I truly believe that we are here in this world for a reason, everybody has a mission and obstacles to overcome. This disease was one of my obstacles and in the end I can say that 50% of the cure depends on medicine and the other 50% depends on the patient, we are capable of anything, there is no limit to what we can do using the power of the mind.

At the end of 2009, after almost 4 years working at ABRALE, I was presented with the opportunity of becoming manager of the organization’s international department. I gladly accepted the challenge which includes coordination of all of the Latin Alliance’s activities as well as fostering relations with other organizations with which we can cooperate and exchange knowledge to the benefit of ABRALE, ABRASTA the Latin Alliance and its members. The aim of this work is to help improve the work of such organizations thus contributing to the achievement of our ultimate objective which is improving treatments and the quality of life of the patients we support.

How to contact me

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See also our previous ECPC Members of the Month.