Since the start of lockdown, we have been at your disposal and we have continued our activities normally. So do not hesitate to contact us if you wish. We will be happy to give you our advice.

Regarding the ARSER General Meeting, given the constraints imposed by the presence of Covid-19, and as government decisions authorize us to do so, we have decided to postpone it to September.

So you can already note on your calendar:

ARSER General Assembly on Monday September 21, 2020

from 2 p.m. to 5 p.m. in Neuilly sur Seine

Happy New Year!

2020!  New year and new decade: new perspectives!

To each of you, we wish a happy new year, with the best possible health or, at least, with the capacity to tolerate the suffering or disabilities which many of us have.

Within ARSER, our wish, our challenge is to provide advice, comfort and appropriate medical guidance to people who suffer from the after-effects of radiotherapy, whatever they may be.

We therefore actively support medical research and applied research, with a scientific council which has been enriched with high-quality members.

For the ARSER Board of Directors,

Jean-Bernard Froidure, Secretary General

Testimonial : Radionecrosis of the sternum after radiotherapy treatment for a breast cancer

Testimony of a rebirth and gratitude. (Or a happy story after the assessment of a disabling radionecrosis of the sternum)

I am 70 years old and have been retired for 3 months after a life devoted to pediatrics.  On January 2, 1998, at the age of 49, I underwent surgery for right breast cancer followed by a 3-month radiotherapy treatment.  Just after this radiotherapy at the end of April 1998, I suffered a 2nd degree burn on the thorax (anterior radiodermatitis) at the level of the irradiated zone and still today there is a scar with small-surface red varicose veins called telangiectasias (spider veins).

On December 1, 2001, during a train trip, I was thrown violently against the shelf of a toilet sink after a sudden braking.  Despite the immediate pain in the sternum, the shock seemed minor. On leaving the train, I felt very different, which was accentuated by driving back home without power steering! This was now 4 years after radiotherapy.

By December 2001, the pain seemed under control, bearable, but any movement of the torso provokes it acutely.  I was happy not to have breathing difficulties… I was sedentary and my activities were reduced thanks to the support of my entourage.  Some improvement was felt by the end of the month.

But in mid-January 2002, on the occasion of a hectic trip, the sternal pain came back and would not let go.  It would take five additional months to rediscover arm or body mobilization without pain, without existing treatment other than paracetamol, caution and protection of my chest if necessary.

Then finally, the sternum went SILENT for 16 years, except for its slight deformation that has never changed.

But on April 10, 2018, during a consultation with a hospital rheumatologist who placed me uncomfortably on an examination table, my sternum woke up again when I got down from the table and the pain would not leave me anymore.  It had now been 20 years since my radiotherapy, with no relapse of cancer. I was now 69 years old.

The next 5 months would be very difficult, day and night, painful in the movements of the body at the slightest rotation, hindering not only dressing, but also my speech rate and my breathing at the slightest effort.  Life then became very painful. I was looking for solutions…

On September 6, 2018, I met Professor Sylvie DELANIAN and discovered the association ARSER.  She offered me a treatment for osteoradionecrosis, combining three drugs (PENTOCLO) over 6 months, renewed in March 2019. Within one month, the treatment restored my mobility and enabled me to find a quality of life… moving, breathing, getting dressed … living simply became a pleasure in the silence of the body… and it continues.

I thank Professor Sylvie DELANIAN and the ARSER team who contribute to the research and recognition of these rare and unrecognized radionecrosis pathologies.

Beatrice K.

Médicament CLASTOBAN 800 mg à nouveau disponible

Fin mai 2019, le Laboratoire BioProjet nous a annoncé que, dans toutes les pharmacies de ville, le CLASTOBAN 800 mg, soluble, est à nouveau disponible, alors qu’il était en rupture de fabrication depuis décembre 2017.

Une très bonne nouvelle pour tous les patients sous traitement PENTOCLO, en particulier pour ceux qui ont des pathologies ORL (ostéoradionécrose), donc des difficultés à avaler.


Le compte-rendu de l’assemblée générale de l’ARSER du 25 mai 2019 est disponible. Si vous ne l’avez pas reçu, n’hésitez pas à le demander en écrivant à ecrire@arser.asso.fr

Testimonial: Lymphedema and brachial plexitis


The story of my illness and its evolution is not only medical; it has also nourished the professional and personal aspects of my life for 50 years, with a desire to continue living by rationalizing my medical problems.

It was spring 1971, I was 33 years old and gave birth to 4 children, my days were well filled with my research activity at INSERM (National Institute of Health and Medical Research). I am then diagnosed with a tumor in the left breast which, after mammography and biopsy, turns out to be cancerous. The word cancer at the time was “taboo” and they sometimes refused to shake my hand, the doctors who treated me never said that terrible word, we had at that time, hypocritical conversations that generated “anxiety”.

After three months of preoperative radiotherapy of the breast and adjacent ganglionic areas, and radiotherapy of the ovaries to permanently stop the menstrual cycles, I underwent heavy surgery (removal of the left breast with axillary lymph node dissection) followed by new sessions of postoperative radiotherapy. No medical treatment will be prescribed for me, it was not the time. A delayed mobilization of the arm and massages to control the lymphatic edema will be my only treatments.

Although right handed, a small deficit of the fingers of the left hand at that time was a challenge for me because I played the piano; I felt that the left hand hardly followed the pace… my professional and family activities also contributed to the abandonment of the piano.

The years passed with 2-3 inflammatory episodes and limited lymphatic edema of the arm and forearm controlled with antibiotics. The wearing of long-sleeved clothes (a bit restrictive in summer), avoiding cut-stings by gardening with the left arm, will be my essential precaution. Finished, of course, the beach and the swimsuit, especially because of the comments of summer visitors. I discovered hiking in the mountains in summer, with backpack, no problem for my left arm; these steps at altitude did not pose any difficulty. Professionally, from 1987, I changed direction and for 25 years, I carried out many medical humanitarian missions on the ground with a well-known international association.

In 2008, at the age of 70, thirty-seven years later, I had more difficulties with the left hand when using the computer; I consulted several doctors but no answer, only compassion. I was told that it was an after effect of radiation therapy and that there was nothing to do. After an EMG (electromyogram) evaluating the electrical current of the nerves of each arm, a carpal tunnel operation will be offered to me, the operation on the right side will be a great success but no result on the left.

At the end of 2011, I had a discomfort with loss of consciousness (AIT or Transient Ischemic Accident), aphasia with paralysis of the left side of the tongue for a short period. Transported by firefighters to Bichat hospital, emergency exams will be made: brain MRI – cardiac assessment. If moderate hypertension was found, nothing at the time caught the attention of doctors and therefore no accurate diagnosis. My left arm was losing strength and the pain was managed with paracetamol.

It was then that, quite by chance, I was told about Dr. DELANIAN at the Saint-Louis Hospital, whom I would see for a consultation in June 2012. A randomized “PENTOCLO” therapeutic protocol with a draw had been recently organized by Dr. DELANIAN who suggested that I participate. I gave my agreement quickly because I finally found a doctor who took into account all my neurological symptoms which were accentuated;  a large lymphedema developed despite the daily wearing of an elastic compression sleeve, with intermittent tingling (paresthesia) of fingers. An MRI of the brachial plexus and various examinations confirmed a radially induced brachial plexitis, which is a nerve condition related to the dose of radiotherapy in 1971 in the supraclavicular trough (above the breast), nerve degeneration that has evolved in steps, slowly but gradually.

I followed the randomized protocol “PENTOCLO” for 18 months (from June 2012 to December 2013) with regular monitoring, with no side effects. The double-blind therapeutic protocol included Pentoxifylline, Tocopherol, and Clodronate as a daily dose, and I later learned that I had received the “real” treatment, without measuring the benefit. I was stable, but had no way of comparing whether the inevitable progression of plexitis was slower with treatment, each patient being unique in their reactions to the disease and treatment.

In 2014, despite maintaining a lighter treatment, the loss of sensitivity and motor skills of the hand was accentuated, and I had to put my arm in a sling to relieve the weight during walking.  In 2015, lymphedema had become so important with a sore and very heavy arm that I contacted Cognacq-Jay Hospital, a reference center for lymphedema. I was offered a 15-day hospitalization to mechanically reduce lymphedema with night-time self-bandaging and wearing a Mobiderm sleeve. The result will be useful therefore satisfactory at least some time.

At the end of 2015-2016, Dr. Delanian suggested a more advanced vascular exploration (Doppler – angioscanner – angio-MRI) which shows the existence of evolutionary arterial and venous vascular disorders post-radic with a stenosis (narrowing) at axillary-sub-clavicle, which increased the edema of the arm while the hand became cold. Phlebography and angioplasty followed by the placement of a venous stent were proposed and then performed in good conditions.

However, the following night, I suffered a brief cardiorespiratory stop, necessitating a transfer to intensive care … the heart also had received a lot of rays… The stent will be effective 1 month but will definitely stop.

In 2017, I again have a heart attack, am transported to the emergency room of the hospital Saint-Louis, I am released in the evening without anything abnormal outside a very low transient blood pressure. The subsequent cardiological assessment will finally show something… in echocardiography, a small pedicled left intra-ventricular mass (like a bell stick in the cardiac ventricle) evoking a myxoma (benign tumor); and I am on anticoagulation. Cardiac MRI at Saint-Joseph Hospital will confirm left intraventricular myxoma with emboligenic risk, new sequelae of so-called exceptional radiotherapy…

Thus, in 2019, I am aware that almost 50 years after the discovery of breast cancer, I am there, “lucky”, despite the loss of the use of my hand and my left wrist, compensated by a right arm ensuring double work!  In addition with a specific support that allowed me to limit many pitfalls.

If I remain medically realistic, my mind is always alert to the world. With my 81 years, I keep a satisfactory autonomy and I have confidence in the progress of clinical research as in basic research to understand the mechanisms of the disease.  Budgets could allow continuation of the research work initiated by Dr. Delanian and her team, whom I thank for the work done and the knowledge put at the service of patients.

The purpose of my testimony is to help people who, like me, have been operated on for breast cancer, to make the right decisions, and to be proactive about the care that is offered to them, always with hope and confidence in medicine that is constantly progressing.

March 2019 Marie-Claire G.

Testimonial: Lumbosacral plexopathy


Lumbosacral plexopathy

Treated for 3 years by doctor Sylvie DELANIAN, I wish to attest to the improvement of my health.

First my story:
In August 1997, at the age of 47, discovery of colorectal cancer.
Radiotherapy treatment (25 pre-operative sessions) and chemotherapy. Colo-anal resection with colostomy followed by chemotherapy. Continued in March 1998.

Very quickly in 1998, heaviness in the left foot then more intense pain when getting up and going to bed.  I learned to live for ten years with these daily pains, which were intensified by running or walking. Then, I noticed an amyotrophy of the left calf and a progressive claudication appeared.

At the end of 2013, after prolonged physical work, I suffered from very painful cramps in both legs with fasciculations in the calves.  Walking had become almost impossible.

In March 2014, appearance of daily urinary disorders and following a 1st EMG (Electromyography) in Saumur, ALS (motor neuron disease) is diagnosed and a treatment is prescribed (RILUTEK and TOCO).

Six months later, after a 2nd EMG, the diagnosis of ALS was questioned because the symptomatology had improved.

In March 2015, 3rd EMG in Tours evoked a radiculopathy (pinched nerve) in the lower limbs.

I was then directed in Paris to Dr PRADAT who diagnosed a lumbosacral radio-induced Plexopathy and who sent me to consult Dr Sylvie DELANIAN.

For 3 years Dr DELANIAN, who prescribed a treatment that she had developed, treated me.  I noticed a rapid improvement, the pain becoming bearable and the walking easier.

Suspecting stenosis of the arteries following persistent pain in the left calf Dr. DELANIAN used an angio-scanner to highlight a tight stenosis of 70% of the left iliac artery.  The insertion of a stent for 1 year contributed greatly to improving walking and largely eliminated pain.

I am now able to walk 4 to 5 km without difficulty.

In conclusion, I am very grateful to Dr Sylvie DELANIAN who enabled me to benefit from her treatment.

Her expertise and the knowledge she has accumulated provide great hope for the relief of patients suffering from the after-effects of radiotherapy.

Robert P.

Testimonial: Radiculopathy


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

Des séquelles radio-induites reconnues “maladie rares”

Lors de notre dernière Assemblée Générale du 26 mai 2018, Roselyne NICOLAS, Responsable des Relations extérieures de l’ARSER, nous a informés de l’avancement de ses relations avec ORPHANET pour la reconnaissance des séquelles de la radiothérapie en tant que « Maladies rares ». Nous avons alors pris l’engagement de développer les efforts nécessaires pour étendre cette reconnaissance aux principales complications graves de la radiothérapie.

Quatre mois plus tard, après plusieurs entretiens avec notre Présidente, le Pr Sylvie DELANIAN, le Comité scientifique et médical d’ORPHANET a pris la décision de créer les deux entités « maladies rares » suivantes :

– Plexopathie radio-induite – ORPHA:521123  https://www.orpha.net/consor/cgi-bin/Disease_Search_Simple.php?lng=FR
– Ostéoradionécrose mandibulaire – ORPHA:521127   https://www.orpha.net/consor/cgi-bin/Disease_Search_Simple.php?lng=FR

Nous pouvons dire que nous sommes particulièrement émus de ce résultat, parce ce qu’il s’agit de deux thèmes vraiment importants pour lesquels le Pr Sylvie DELANIAN a consacré 20 ans de sa vie professionnelle. Nous remercions vivement ORPHANET pour avoir entendu nos messages au bénéfice des patients dits « longs-survivants » du cancer.

Alors, Oui, c’est une victoire !

Soyons en fiers ! Et surtout heureux pour tous les patients concernés par ces séquelles !

Pourquoi, sommes-nous si contents ?

Parce que ce référencement par ORPHANET va renforcer la connaissance et la reconnaissance des séquelles de la radiothérapie, ce qui est l’un des buts de l’ARSER.

Pour information, ORPHANET a été créé en France en 1997 afin de rassembler les quelques connaissances disponibles sur les maladies rares pour améliorer le diagnostic, le soin et le traitement des patients. Cette initiative est devenue un effort européen à partir de l’an 2000, financée par des fonds de la Commission européenne : ORPHANET s’est progressivement transformé en un Consortium de 40 pays répartis en Europe et à travers le monde.

Au cours des 20 dernières années, ORPHANET est devenu la source d’information de référence sur les maladies rares. En tant que tel, ORPHANET s’engage à aider tous les publics à accéder à une information de qualité sans que ceux-ci se perdent parmi la pléthore d’informations disponibles en ligne, de fournir les moyens d’identifier les patients atteints de maladies rares et de contribuer à générer des connaissances en produisant des données scientifiques massives, réutilisables et informatisées.

Le travail d’ORPHANET tend à atteindre trois objectifs principaux :

Améliorer la visibilité des maladies rares dans les domaines du soin et de la recherche en développant la nomenclature d’ORPHANET (chaque maladie reçoit un numéro ORPHA unique) qui est intégrée dans les systèmes d’information de santé et de recherche.

Fournir des informations de haute qualité sur les maladies rares et de l’expertise afin de permettre le même accès à la connaissance pour toutes les parties prenantes, car les patients atteints de maladies rares sont éparpillés dans le monde entier, tout comme le sont les experts en maladies rares.

Contribuer à la production de connaissances sur les maladies rares : assembler les pièces du puzzle fournies par des experts provenant du monde entier, allant des professionnels de soins de santé et des chercheurs, jusqu’à des représentants de patients et des professionnels du secteur médico-social. (Voir : https://www.orpha.net/consor/cgi-bin/Education_AboutOrphanet.php?lng=FR )

Que peut apporter, au quotidien, cette classification « maladie rare » de la plexite radio-induite et l’ostéoradionécrose mandibulaire aux patients qui en sont atteints ?

ORPHANET n’a pas encore développé les informations spécifiques à ces deux nouveaux référencements. Cependant on trouve sur son site un document, régulièrement mis à jour, qui s’intitule « Vivre avec une maladie rare en France ? » https://www.orpha.net/orphacom/cahiers/docs/FR/Vivre_avec_une_maladie_rare_en_France.pdf

Ce document exhaustif compte 71 pages, ce qui pourrait freiner sa lecture, mais il est très structuré. Sa division en nombreux chapitres permet d’aller directement au sujet qui intéresse le lecteur.

Vous y trouverez les aides (humaines, financières et techniques) et les prestations permettant aux personnes atteintes de maladies rares (en situation de handicap ou non) et à leurs proches d’avoir un accompagnement et une évolution dans la société la plus proche possible de celle des personnes valides.

Nous avons noté la prise en charge des maladies rares par l’assurance maladie (Chapitre I. B. page 17), en particulier la reconnaissance en affection longue durée (ALD) (chapitre I. B. 3. Page 18) avec remboursement par l’assurance maladie des soins pour les maladies rares, mais aussi prise en charge possible des frais de transport (I. B. 5 page 22).

La reconnaissance « maladie rare » facilite également l’obtention de la Carte Mobilité Inclusion (CMI) qui a pour but de faciliter la vie quotidienne en permettant de bénéficier de certains droits notamment dans les transports. Elle remplace progressivement depuis le 1er janvier 2017, les cartes d’invalidité, de priorité et de stationnement. (II. A. 1. Page 25)

En résumé, cette classification « maladie rare » de la plexite radio-induite et l’ostéoradionécrose mandibulaire devrait permettre aux patients qui en sont atteints d’améliorer leur vie au quotidien grâce à la reconnaissance de leur problème de santé, mais aussi d’en parler à leurs médecins pour les impliquer dans cette (re)connaissance.

Cette avancée a été possible également grâce aux adhérents de l’ARSER. Si vous, lecteur, vous souhaitez nous rejoindre et être informé régulièrement de nos démarches, il vous suffit de cliquer sur Bulletin d’adhésion dans la colonne de droite et de nous renvoyer votre adhésion complétée.

A bientôt ? Plus nous serons nombreux, plus notre voix pourra se faire entendre !

Bien cordialement.
Jean-Bernard Froidure
Secrétaire général

Les Forums évoluent

Chaque Forum permet aux individus qui y participent de sortir de l’isolement de leur histoire singulière et d’échanger sur leur quotidien : « Suis-je seul à vivre ça ? Mais comment font les autres patients pour supporter ? Comment vais-je évoluer ? Comment fait l’entourage ? Quelle astuce pour éplucher mes légumes, pour me laver ? Quels moyens pour me déplacer avec un handicap ? Comment avaler quand je ne peux déglutir ?» etc.

Chaque patient étant le meilleur informateur de son vécu, le Forum peut apporter une aide que le corps médical n’a pas vocation à développer… Un « patient-expert » pourra ainsi échanger avec un autre. Votre implication fera le succès du Forum.

Pour faciliter la communication entre les patients, les sujets ont été rassemblés par grand thème, en tenant compte de la zone irradiée. Les forums sont désormais moins nombreux : 26 au lieu de 82. Ils correspondent aux séquelles connues de la radiothérapie, sont à votre disposition pour cibler une discussion, en fonction du thème qui vous préoccupe. N’hésitez pas à exposer votre ressenti, déposer votre témoignage, poser des questions, exprimer des conseils qui aideront sans doute d’autres personnes qui, elles-mêmes, sauront vous apporter leur concours et réconfort.

Nous vous souhaitons de bons et fructueux échanges !