ARSER’s main objective is to develop research into the after-effects of radiotherapy, and thus, to achieve this, to raise funds.
Its aim is not to establish basis for claim: ARSER is not intended to group patients considering they are “victims” of radiotherapy. Rather ARSER wants to inform patients and doctors about the progress of the research on the after-effects of radiotherapy and to finance it.
Dr. Sylvie Delanian is one of the very first physicians in the world to have cared about the after-effects of radiotherapy as a radiotherapist and to have provided answers, particularly for treatments that have been in effect for more than 10 years.
Along with Jean-Louis Lefaix, a researcher at the CEA, and then with Dr. Pierre-François Pradat, neurologist, she led research to better understand the mechanisms and develop new treatments to reduce these after-effects.
Many patients cured of their cancer long ago, called “long-term survivors”, and no longer undergoing medical treatment, are often unaware that the ill-systematised symptoms they suffer are after-effects of radiotherapy.
First and foremost, I want to publicly acknowledge my thanks to Dr. Sylvie Delanian. Through her extreme competence, her ability to listen, and her humanity, she is a role model and I can really say that she saved me.
Born in 1957, I presented a pure seminoma in 1996, at the age of 39, which was treated and cured by local surgery followed by “intense” radiotherapy on the abdomen and then the thorax. In 2012, 16 years later, I suffered a sudden and rapid loss of strength in my legs. In retrospect, I had a tendency for 2-3 years to twist my ankle, etc.
After many examinations and hypotheses spread out over long months, the diagnosis was finally made and confirmed by Dr. Delanian (for the record I’m a researcher and I found her scientific articles on the subject). I was convinced to take a PENTOCLO antifibrosant treatment that started in 2012 and is still in progress in 2019. This treatment allowed me to stop the process of degeneration (nerves and fibrosis) of my lumbar plexus (radiculopathy) by a slight improvement of the neurological situation then a stabilization … Since then, I am autonomous, I can move with feet almost normally, but with a persistent weakness in the legs especially when lifting the feet (beware of the carpets!). Finished tennis, etc., but I live almost normally.
It must be said that this situation was not easy to accept and there followed a slight depression (this was new to me) at the end of 2012 because of anxiety about the rest (I already saw myself in a wheelchair, and with professional and family consequences). I met a Buddhist psychiatrist (Zen) and these circumstances caused deep soul searching and gradually led to a clarification of many things. I continue to practice Zen meditation since then with my wife; I did not need antidepressants.
For the record, the psychiatrist I consulted during my depressive reaction had prescribed an antidepressant. Which I did not take, because of my resistance to the idea, and the meditation helped me to get through it. I spoke to Dr. Delanian who offered me a drug from the IRS family Venlafaxine 37.5 every morning. This is the smallest dose to limit the energy losses of the class of anti-depressants but at a dose 10 times lower … which convinced me. The goal is to better recycle serotonin (by inhibiting its recapture) and so help (analog of a small crutch, according to Dr. Delanian) one of the neurotransmitters control (my legs in this case) … allowing W to avoid exhaustion. As for this medicine, in the end I think we should not hesitate, because it allowed me to get through a tough situation and break out of a vicious circle.
Finally, I also practiced (and practice still irregularly) meditation, the idea is not a miracle drug that makes the pain disappear, but a help to give perspective by looking at the situation with a soothing effect (calm mind and body). There are many related practices (sophrology, mindfulness, etc.) depending on the objective (meditation paradoxically not having an objective, it is precisely the way not to focus on a desired result!).
Courage, sharing, hope and compassion. Jean-Pierre