By Irina Echarry
HAVANA TIMES – Cuban director Víctor Alfonso Cedeño, creator of animated series such as “Dany y el club de los Berracos” and “Yesapín García”, and the short “Lavando calzoncillos”, needs help. Victor published a moving letter describing the entire process of his illness. He explains the need for a humanitarian visa for the US where there are hospitals that could offer test treatment. Here his words:
Today I am not here to make you laugh.
My name is Victor Alfonso, I am the creator and director of the cartoon series Dany y el Club de los Berracos, and Yesapín García. I have cancer.
In 2018 I was diagnosed with a Chondrosarcoma that had been growing inside me for about three years. The decision made at the National Institute of Oncology and Radiobiology is surgical. Therefore, in August of that year I underwent an operation where a grade three hemipelvectomy was performed, with urethral and bladder reconstruction due to surgical accidents.
In January 2020 tests confirmed the return of the tumor. In March I underwent another operation. This time with unilateral orchiectomy and urethral reconstruction due to surgical accidents. After the surgery, I received a treatment with electron and photon radiotherapy, interrupted several times due to technical breaks.
In July 2020 I went back to consultation and for imaging studies. The tumor returned and I have other small tumors growing in the area of the previous operation. Doctors told me that my case is inoperable, that they would have to cut me in half. They can only provide follow-up and guide me to go home and expect the worst. They cannot do a study on me and I’m practically helpless without treatment or effective medication.
Possibilities for treatment
Chondrosarcoma is a rare disease that only affects 1% of cancer patients. In Cuba it is not studied pathologically. They do not have the tumor markers to know the subtype, which would determine a treatment. They only apply mutilating surgery and radiation, or serums as a last option to alleviate pain. But the Chondro doesn’t react to this, it only grows and multiplies. A thorough analysis of tumor cells and an accurate imaging study are needed.
There are institutions in the United States such as the Sylvester Comprehensive Cancer Center at the University of Miami Health System that have the new proton radiotherapy and can provide personalized care and translational or precision genomic medicine through clinical trials in advanced phases to find out what medication can respond to sarcoma. This institution receives international patients.
Likewise, several General Hospitals in different States have the most advanced research and clinical trials, using oral tumor inhibitors that reduce the sizes from genetic studies. They also perform proton radiosurgery and can cause locally advanced inoperable sarcomas to reduce in diameter. After possible tumor resection, they maintain PET-CT follow-ups in search of possible cells that may cause relapses, thus ensuring total cure.
I have also read that the Sylvester Comprehensive Cancer Center at the Miller School of Medicine, University of Miami has a good oncology research budget and is currently very focused on advanced clinical trials. Intensity modulated radiation therapy (IMRT) is also practiced, guided by MRI ViewRay and Siemens 4D-CT scanner.
I need help. I need help with immigration procedures in these times of COVID to obtain an emergency humanitarian visa so that one of these or other institutions can welcome me as a volunteer participant in clinical trials.
I want to continue bringing joy to children
Here in Cuba they have sent me home to wait for a near death, they can only help me with palliative surgeries as the situation worsens or in case of lung metastasis or other affectations.
I feel like I have a time bomb inside me that can explode at any moment. I could even perish from an infection due to the lack of medications that is experienced these days here. My immune system weakens because of a little varied diet.
I’m a young man dedicated to bringing joy to children and not so young through my audiovisual work. I have much more to offer. I’m still working on the 3rd and 4th seasons of Yesapín García, the miniseries Listo Calixto, and the second season of Club de los Berracos.
The time factor is essential to save myself and at least achieve an acceptable quality of life. Tumor cells have mutated in me after each surgical manipulation and have become more aggressive.
Please share my request so that I can reach the largest number of people and find faster those who can open the way for me and give me help. Thanks for your time. Blessings.