{"id":13,"date":"2010-11-16T13:59:43","date_gmt":"2010-11-16T12:59:43","guid":{"rendered":"http:\/\/www.menator.fr\/waldprod\/?page_id=13"},"modified":"2024-01-05T12:37:28","modified_gmt":"2024-01-05T11:37:28","slug":"membres","status":"publish","type":"page","link":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/membres\/","title":{"rendered":"Membres"},"content":{"rendered":"\n
\n

LES MEMBRES<\/h2><\/div>\n\n\n \n\t\t\t
\n\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t<\/path><\/svg>\n\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\n\n\n

Les membres de notre association sont dispers\u00e9s aux quatre coins de la France mais comme notre association regroupe toutes les personnes francophones atteintes de la maladie de Waldenstr\u00f6m, nous avons \u00e9galement le plaisir d’avoir parmi nous des membres en Belgique, en Suisse, au Canada et m\u00eame au Br\u00e9sil.<\/p>\n<\/div>\n\n\n\n

\n
\n

Trombinoscope <\/h4>\n\n\n\n

Le trombinoscope… c’est l’endroit ou l’on met sa trombine pour que tout le monde puisse mettre un visage sur un nom !<\/p>\n\n\n\n

Avec Internet et la liste d’\u00e9change de notre association nous nous connaissons toutes et tous, nous nous \u00e9crivons, nous \u00e9changeons nos exp\u00e9riences mutuelles mais si nous n’avons pas encore eu la chance de nous d\u00e9placer pour assister aux r\u00e9unions annuelles…. nous ne savons pas vraiment quelle t\u00eate il a Michel du 43 ou Josiane du 11 et Fran\u00e7ois du 42.<\/p>\n\n\n\n

C’est quand m\u00eame bien plus agr\u00e9able de savoir \u00e0 qui l’on parle, de pouvoir visualiser le visage de la personne que l’on soutient et de reconnaitre les gens que l’on va rencontrer lorsqu’on pourra enfin venir \u00e0 une r\u00e9union de l’association.<\/p>\n\n\n\n

Voila pourquoi aujourd’hui nous avons cr\u00e9e cette rubrique \u00ab\u00a0Trombinoscope\u00a0\u00bb et nous vous invitons \u00e0 venir y mettre une photo de vous pour vous pr\u00e9senter \u00e0 tout le monde.  Ce trombinoscope est en acc\u00e8s r\u00e9serv\u00e9 aux membres de l’association et son acc\u00e8s est prot\u00e9g\u00e9 par un login et un mot de passe. Nous restons entre nous. Non pas par sectarisme mais parcequ’il nous faut respecter ceux qui ne souhaitent pas apparaitre sur Internet comme malade Waldenstr\u00f6m.<\/p>\n\n\n\n

N’h\u00e9sitez plus une seconde, cherchez votre plus belle photo ou faites en une imm\u00e9diatement et mettez la sur le trombinoscope. Il n’y aura pas d’\u00e9lection de Miss Waldenstr\u00f6m ou de Mister Waldenstr\u00f6m, mais vous aurez particip\u00e9 \u00e0 la vie de notre association en partageant un peu de vous avec les autres et ce sera d\u00e9j\u00e0 \u00e9norme.<\/p>\n\n\n\n

Merci pour votre participation.<\/p>\n<\/div>\n\n\n

\r\n
\r\n
\r\n \"alsam80\" <\/div>\r\n
\r\n

alsam80<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"ANJO\" <\/div>\r\n
\r\n

ANJO<\/h3>\r\n

52 ans sud seine et marne, j'ai \u00e9t\u00e9 diagnostiqu\u00e9 WM le 19 f\u00e9vrier 2024 suite \u00e0 une neuropathie p\u00e9riph\u00e9rique sensitive depuis novembre 2022.\r\n1 er protocole R-Brenda pour ma neuro. Je souffre beaucoup des pieds.\r\nMalgr\u00e9 tout \u00e7a, je continue la plong\u00e9e sous-marine.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Anna\" <\/div>\r\n
\r\n

Anna<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"B\u00e9atrice <\/div>\r\n
\r\n

B\u00e9atrice KROLAK<\/h3>\r\n

diagnostiqu\u00e9e en septembre 2020<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Bernard <\/div>\r\n
\r\n

Bernard Henninger<\/h3>\r\n

n\u00e9 en 1960. Cameraman et \u00e9crivain. D\u00e9couverte de Waldenstr\u00f6m \u00e0 la suite d'h\u00e9morragies : d\u00e9tection d'une maladie de Willebrand, atypique, puis identification de \u00ab Wald \u00bb. Chimioth\u00e9rapie en 2009, reprise du travail en 2010, injections d'immunoglobuline...<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"catherine <\/div>\r\n
\r\n

catherine tissier<\/h3>\r\n

N\u00e9e le 10 ao\u00fbt 1951,\r\nJe viens d'\u00eatre diagnostiqu\u00e9e Wald, en juin 2020, un peu par hasard suite \u00e0 des probl\u00e8mes d'hypercalc\u00e9mie et d\u00e9couverte d'un ad\u00e9nome thyro\u00efdien. Pour l'instant, maladie dormante... jusqu'\u00e0 quand ?<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"cbedu\" <\/div>\r\n
\r\n

cbedu<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"christian <\/div>\r\n
\r\n

christian courault<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Christian <\/div>\r\n
\r\n

Christian DELAUNAY<\/h3>\r\n

D\u00e9cel\u00e9 Waldenstr\u00f6m en Octobre 2022.\r\nPic Monoclonal en progression (d\u00e9cel\u00e9 \u00e0 22.9 et arriv\u00e9 \u00e0 24.2)\r\nPas de traitement pour le moment\r\nSympt\u00f4mes : Maux de jambes et fatigue\r\nN\u00e9 en 1952\r\nHabite le Calvados\r\nProfession : Retrait\u00e9 de l'Enseignement (Electrotechnique)\r\nMari\u00e9, 3 enfants<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Christian <\/div>\r\n
\r\n

Christian VALTEAU<\/h3>\r\n

G\u00e9om\u00e8tre-Expert retrait\u00e9<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Christophe <\/div>\r\n
\r\n

Christophe GAUTIER BERNARD<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Claude <\/div>\r\n
\r\n

Claude NUSSWITZ<\/h3>\r\n

83 ans. Pic d\u00e9tect\u00e9 le 17 f\u00e9vrier 2023. Asymptomatique.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Claude-Alain <\/div>\r\n
\r\n

Claude-Alain SABATIER<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"daniel <\/div>\r\n
\r\n

daniel d.<\/h3>\r\n

Bonjour,\r\nje suis Daniel, retrait\u00e9 66ans ,m\u00e9tiers effectu\u00e9s:Tourneur sur m\u00e9taux,Confectionneur pneus DUNLOP\/GOOD-YEAR,Agent Qualit\u00e9,Gestionnaire du rechapage AVION,Agent de m\u00e9thode et d\u00e9veloppement AIRSPRING(metteur au point)\r\nhabite Pr\u00e9milhat commune touchant Montlu\u00e7on ,Ville moyenne avec sa caserne 121\u00b0 Tansform\u00e9e en \u00e9cole de Gendarmerie\r\nMa maladie \u00e0 \u00e9t\u00e9 diagnostiqu\u00e9e en 2012,mais le pic monoclonal puis polyclonal en2008\/2009 et retour en monclonal.\r\nAnnonce maladie de waldenstrom en 2012 apr\u00e8s ponction de moelle osseuse par h\u00e9matologue docteur Bons clinique Saint Fran\u00e7ois Monlucon\r\nPour le moment grosses fatigues venant brutallement ou apr\u00e8s effort\r\nDouleurs hanches tr\u00e8s fortes \u00e9galement jambes nerfs, muscles (impression de sentir mes os).je suis maintenant tr\u00e8s sensible au froid,me contract et tremble de partout mais surtout des jambes,alors qu'avant je ne craignais pas le froid.\r\nTr\u00e8s net am\u00e9lioration des douleurs apr\u00e8s 4 mois de traitement prise :\r\nAdartel 200mg puis g\u00e9n\u00e9rique Ropinirole 150mg et Lamaline\r\nSuivit tous les 6 mois par h\u00e9mato,tous les 2mois par m\u00e9decin traitant car je suis diab\u00e9tique avec hyper tension ,probl\u00e8me cardiaque\r\nisqu\u00e9mie invers\u00e9e V6 et d\u00e9but de fatigue d'un rein.\r\nEgalement avec taitement a vie pour ablation complete de la Thyroide\r\nen2000 et probl\u00e8mes de Calcium\r\nVoila mes informations sur moi que je vous donne aujourd'hui\r\nMer\u00e7i de me lire.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Dani\u00e8le <\/div>\r\n
\r\n

Dani\u00e8le FRANCOIS<\/h3>\r\n

J'ai 78 ans, surveill\u00e9e depuis 2019 suite \u00e0 un contr\u00f4le provoqu\u00e9 par des fourmillements al\u00e9atoires dans les pieds. Depuis janvier 2022 contr\u00f4le tous les 6 mois \u00e0 Bic\u00eatre. En octobre 2023 j'apprends que c'est la maladie de Waldenstrom. J'ai accept\u00e9 de participer au protocole IMAGINE ( observation des neuropathies avec anticorps anti-MAG). Pour le moment, aucun soin, je supporte, fourmillements, et diverses manifestations d\u00e9sagr\u00e9ables.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Didier <\/div>\r\n
\r\n

Didier PENNETIER<\/h3>\r\n

Collectionneur de maladies rares - \r\n\r\ndemeure \u00e0 Montamis\u00e9, Vienne - \r\n\r\n1975 r\u00e9tinite pigmentaire (r\u00e9cessive) - \r\n\r\n2016 diagnostic Waldenstr\u00f6m - \r\n\r\n2018 juillet Traitement -\r\n\r\nfin 2020 Bing Neel accompagn\u00e9 d'un Chylothorax - \r\n\r\n2021 traitement BN associ\u00e9 autogreffe de cellule souche -\r\n\r\n2021 novembre debut duTPI et fin du Chylothorax - \r\n\r\n2022 septembre traitement TPI au PRC - \r\n\r\n2022 novembre traitement GEM li\u00e9 \u00e0 Waldenstr\u00f6m - \r\n\r\n2025 avril Carcinome de Merkel -<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"evelyne <\/div>\r\n
\r\n

evelyne bellessort<\/h3>\r\n

En r\u00e9mission depuis 2014<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"fabienne\" <\/div>\r\n
\r\n

fabienne<\/h3>\r\n

Diagnostiqu\u00e9e le 6\/09\/2019.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Florence <\/div>\r\n
\r\n

Florence D'HELLIER<\/h3>\r\n

Professeur d'enseignement artistique (danse contemporaine)au conservatoire de La Rochelle \r\nN\u00e9e en 1962\r\nSympt\u00f4mes neurologiques depuis novembre 2021.\r\nDiagnostic confirm\u00e9 de la maladie de Waldenstr\u00f6m en janvier 2023<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Gabriella <\/div>\r\n
\r\n

Gabriella BARAN<\/h3>\r\n

n\u00e9e le 20 f\u00e9vrier 1950 \u00e0 Cheratte (Belgique ) de p\u00e8re Polonais et m\u00e8re Allemande .\r\nEtudes au lyc\u00e9e L\u00e9onie de Waha.\r\nMaman de 2 filles n\u00e9es respectivement en 1975 et 1981, veuve en 1987.\r\nArriv\u00e9e \u00e0 Saint Jean de Monts (France) d\u00e9but 2002\r\nCr\u00e9ation de l'association Vivre et Laisser Vivre en septembre 2005, association qui s'occupe de chats errants et ou abandonn\u00e9s<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Ga\u00eblle <\/div>\r\n
\r\n

Ga\u00eblle DELETANG<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Georges <\/div>\r\n
\r\n

Georges ROY<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"g\u00e9rard\" <\/div>\r\n
\r\n

g\u00e9rard<\/h3>\r\n

bonjour a tous je me nomme gerard j'ai 66 ans. Je suis en retraite depuis 5 ans. A l'age de 56 ans de gros problemes de sante apparure, un cancer des bronches fut diagnostiqu\u00e9, resultat 12 seances de chimio et 33 seances de radiotherapie en remission depuis 5 ans. En novembre 2018 apparures de grosses douleurs dans les hanches et les jambes, prise de rdv a l'hopital ou fut fait un prelevement de la moelle diagnostiqu\u00e9 le 24 decembre 2018 (bon et joyeux NOEL) maladie de waldenstroem, resultat 6 seances de chimio. Depuis mai 2019 arret des traitements, le cancer semble stabilis\u00e9. Je souhaite bon courage a tous. Profiter de la vie et ne penser pas trop a votre maladie.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"g\u00e9rard <\/div>\r\n
\r\n

g\u00e9rard s.<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Germain <\/div>\r\n
\r\n

Germain PHILIPPE<\/h3>\r\n

d\u00e9tection igM faible en 2010 asymptomatique, et non suivi.(\u00e2ge 50 ans)\r\n2021 d\u00e9but d'une polyneuropathie sous les pieds peu handicapante. 2023 traitement neuropathique, injection d'immunoglobuline puis cure de cortisone sans effet.\r\nfin 2024 aggravation rapide de la neuropathie sur les jambes et sur les bouts des doigts, neuropathie devenue tr\u00e8s handicapante plus insomnie s\u00e9v\u00e8re. Pas d'autre sympt\u00f4me de d\u00e9clar\u00e9. \r\nigM faible mais en progression, pas d'anticorps anti MAG, je dois subir une immunochimioth\u00e9rapie d\u00e9but 2025, certainement \u00e0 base de rituximab.\r\n2025, 2 cure de rituximab sans effet en bout de 4 mois, aggravation de la polyneuropathis, apparition d'une diplopie a l \u0153il gauche . Septembre d\u00e9but d une plasmaph\u00e9r\u00e8se, 5 s\u00e9ances suivi par 2 cures de chimio (rituximab et bendamustine).<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Gilbert <\/div>\r\n
\r\n

Gilbert HAFFNER<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Gilles <\/div>\r\n
\r\n

Gilles BARTOLOMEI<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Guy <\/div>\r\n
\r\n

Guy CLETY<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Isabelle <\/div>\r\n
\r\n

Isabelle SERGENT<\/h3>\r\n

59 ans du nord de la France. Diagnostiqu\u00e9e le 4 novembre, an\u00e9mie d\u00e9couverte lors d une prise de sang pour une intervention tendinite de quervain. Hormis les acouph\u00e8nes physiquement j ai la forme malgr\u00e9 9 d h\u00e9moglobine et 97 000 plaquettes. Diagnostiqu\u00e9e le 4 novembre directement par hemato, 1\u00e8re cure d immunochimiotherapie le 20 novembre. Tr\u00e8s dur surtout que je ne me sens pas malade.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"jacques <\/div>\r\n
\r\n

jacques t.<\/h3>\r\n

Bonjour a tous, diagnostiqu\u00e9 novembre 2011, suivi ch de vannes retraite depuis 2008 .Appeler moi amiti\u00e9s. 06 52 38 35 74<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean <\/div>\r\n
\r\n

Jean GUIGONNAND<\/h3>\r\n

Bonjour , \r\n\r\nA ce jour , \u00e2g\u00e9 de 75 ans , en 2021 j'ai \u00e9t\u00e9 diagnostiqu\u00e9 Waldenstr\u00f6m suite \u00e0 une errance m\u00e9dicale de plusieurs ann\u00e9es ( baisse de forme , fatigue , .... )\r\nmon toubib ma "balad\u00e9 " entre plusieurs sp\u00e9cialistes... seul la rhumato m'a fait faire une analyse sanguine pouss\u00e9e et l'h\u00e9matologue \u00e0 confirmer apr\u00e8s la prise de moelle osseuse . A pr\u00e9sent asymptomatique \r\n... pourvu que cela dure !<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean <\/div>\r\n
\r\n

Jean Luc bonnay<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean-Baptiste <\/div>\r\n
\r\n

Jean-Baptiste VANDECAUTER<\/h3>\r\n

N\u00e9 en 1945, retrait\u00e9 (employ\u00e9 de banque en Belgique), ma compagne est atteinte par la maladie.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean-Charles <\/div>\r\n
\r\n

Jean-Charles CARIO<\/h3>\r\n

Bonjour \u00e0 tous; je me pr\u00e9nomme Jean-Charles, j'ai 48 ans, mari\u00e9, 1 enfant.\r\n"Mon Waldenstrom" a \u00e9t\u00e9 diagnostiqu\u00e9 au d\u00e9but de cette ann\u00e9e 2022 \u00e0 la suite d'examens sanguins + my\u00e9logramme r\u00e9alis\u00e9s depuis fin 2020 (Pic monoclonal passant de 4.9 g\/l fin 2020 \u00e0 12.1 g\/l en mars 2022, mutation Myd88).\r\nSouffrant de fourmillements continus dans les pieds associ\u00e9s \u00e0 des douleurs neuropathiques (perte anoxale motrice s\u00e9v\u00e8re), il a \u00e9t\u00e9 d\u00e9cid\u00e9 de commencer un protocole chimio en 6 cycles (commenc\u00e9s fin juillet) avec Rituximab et Bendamustine (clinique Hartmann-Neuilly sur Seine)\r\nPour les douleurs neuropathiques j'ai eu droit \u00e0 une injection d'immunoglobulines...\r\nAujourd'hui en arr\u00eat de travail pour les 6 mois du traitement, j'attends patiemment de voir les douleurs s'estomper voire dispara\u00eetre (il faut garder une part d'espoir) afin de reprendre une vie quotidienne normale (bien impossible \u00e0 ce jour), mon travail et mon sport pr\u00e9f\u00e9r\u00e9 \u00e0 savoir la course \u00e0 pied (m\u00eame si je sais que ce ne sera pas pour tout de suite...)<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean-Marc\" <\/div>\r\n
\r\n

Jean-Marc<\/h3>\r\n

Avec tout le plaisir de pouvoir \u00e9changer ce que l'on sait et ce que l'on ne sait pas, sur cette maladie et peut-\u00eatre aussi sur bien d'autres choses.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean-Paul <\/div>\r\n
\r\n

Jean-Paul GOUSSIN<\/h3>\r\n

n\u00e9 le11-01-1943\r\nJuriste (MSA)\r\nElu (Adjoint Mairie - M\u00e9diateur municipal \u00e0 Laval)\r\nConciliateur de Justice\r\nResponsable d'associations<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean-Pierre <\/div>\r\n
\r\n

Jean-Pierre Alain GONTIER<\/h3>\r\n

Maladie de Waldenstr\u00f6m r\u00e9v\u00e9l\u00e9e en Mars 2006 \u00e0 57 ans. 11 plasmaph\u00e9r\u00e8ses jusqu'en Octobre 2006. 1er traitement avec CHLORAMINOPHENE pendant 2 mois. 2\u00e8me traitement avec FLUDARABINE pendant 2 mois. Augmentation lente de mes IgM. En F\u00e9vrier 2015 participation \u00e0 l'essai clinique de l'IBRUTINIB, avec plusieurs plasmaph\u00e9r\u00e8ses + RITUXIMAB. Malheureusement j'avais re\u00e7u le plac\u00e9bo !!! Depuis d\u00e9but Juin 2021 il m'a \u00e9t\u00e9 prescrit (le vrai) IBRUTINIB \u00e0 280mg. Pour le moment, tout se passe bien... Bonne baisse de mes IgM. Je suis suivi \u00e0 l'h\u00f4pital Haut l'Ev\u00eaque \u00e0 Bordeaux.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean-Pierre <\/div>\r\n
\r\n

Jean-Pierre KOENIG<\/h3>\r\n

Bonjour, j'ai 73 ans. Waldenstrom d\u00e9couvert en 2005. Asymptomatique jusqu'en 2018. Suite \u00e0 une an\u00e9\u00e9mie prononc\u00e9e, j'ai eu une chimio RDC pendant 6mois qui a donn\u00e9 de bons r\u00e9sultats. En 2020, j'ai eu une rechute sous forme d'accumulation intraorbitale provoquant exophtalmie et strabisme. Je suis maintenant un traitement par Imbruvica qui fonctionne bien sans trop d'effet secondaire. Suivi deux fois par an par mon hemato.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean-Pierre <\/div>\r\n
\r\n

Jean-Pierre LE GOALLER<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jean-Pierre <\/div>\r\n
\r\n

Jean-Pierre LORAND<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Jeanne <\/div>\r\n
\r\n

Jeanne PASQUAY<\/h3>\r\n

on a decouvert la maladie depuis environ 20 ans , a l epoque j habitais ORLEANS, elle s est developp\u00e9e en 2022 , j ai ete trait\u00e9e au chu de POITIERS, j ai aussi Bing Neel et une neuropathie , je suis gat\u00e9e,<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"jo\u00ebl <\/div>\r\n
\r\n

jo\u00ebl kichou<\/h3>\r\n

MALADIE de WALDENSTR\u00d6M ce qui l'a provoqu\u00e9....\r\n\r\nVoici les r\u00e9sultats \u00e0 long terme des cons\u00e9quences de l\u2019inhalation ou de l\u2019absorption par les pores de la peau des fum\u00e9es sur les poumons des Sapeurs-Pompiers (BSPP). Lors des expositions lors de sinistres ou au contact d\u2019amiante et d\u2019autres produits tr\u00e8s dangereux, les pompiers mettent leur sant\u00e9 en danger. \r\n \r\nDes sapeurs-pompiers de l\u2019\u00e9poque, toujours actifs ou juste \u00e0 la retraite ont d\u00e9j\u00e0 \u00e9t\u00e9 atteints par des maladies qui se d\u00e9veloppent lentement et qui se d\u00e9clarent de fa\u00e7on aigue et violente plus tard. \r\n \r\nVoici le r\u00e9cit de Jo\u00ebl KICHOU n\u00e9 le 21\/03\/1955 incorpor\u00e9 \u00e0 la B S P P en 1973, fin de service en 1988. Pendant 15 ans, avec mes coll\u00e8gues, mes implications constantes dans les flammes ont \u00e9t\u00e9 lourdes de cons\u00e9quence. Tr\u00e8s souvent chef d\u2019\u00e9quipe, comme beaucoup, j\u2019\u00e9tais devant, au contact avec chaque sinistre qu\u2019il fallait rapidement stopper. Premi\u00e8res \u00e9tapes Nos diff\u00e9rents s\u00e9jours lors des phases d\u2019instruction et de formation se d\u00e9roulaient comme suit : 4 p\u00e9riodes de 3 mois chacune, durant ces p\u00e9riodes lors d\u2019entrainements sur de vrais feux, il fallait tenir bon, s\u2019engager tr\u00e8s vite dans les fum\u00e9es, pour r\u00e9ussir les examens. Lors de nos r\u00e9guli\u00e8res op\u00e9rations d\u2019entrainement dans les caves \u00e0 fum\u00e9e, tous, nous avons longuement crach\u00e9, vomi nos poumons dans les escaliers, mais il fallait tenir bon pour \u00eatre admis aux examens. Seconde \u00e9tape Lors des nombreuses interventions, l\u2019inhalation de fum\u00e9es toxiques \u00e9tait suivies de crachats et de vomissements qui duraient. M\u00eame beaucoup plus tard lors de la douche, lors du grand nettoyage du nez, la suie les fum\u00e9es \u00e9taient toujours bien d\u00e9pos\u00e9es, on crachait toujours noir... Lors des op\u00e9rations de surveillance et d\u00e9blai, nous subissions de lentes combustions dissimul\u00e9es qui d\u00e9gageaient toujours des fum\u00e9es. Notre exposition constante dans cette atmosph\u00e8re durait minimum 4 heures sans interruption. Toutes ces lentes et longues expositions aux fum\u00e9es, autres produits et r\u00e9sidus n\u00e9fastes auront dur\u00e9es 15 ann\u00e9es. Mon livret m\u00e9dical est suffisamment clair sur mes nombreuses expositions, br\u00fblures en intervention, aux bras et aux oreilles. Le 2 d\u00e9cembre 1981, lors de l\u2019attaque d\u2019un violent feu de sous-sol, rue Taibout \u00e0 Paris, l\u2019appareil respiratoire isolant qui me permet de progresser dans les fum\u00e9es tombe en panne, \u00e9touffant sous le masque, je m\u2019en s\u00e9pare et rampe pour m\u2019extraire de cette \u00e9paisse fum\u00e9e. Toussant crachant vomissant je suis pris en charge par des coll\u00e8ges et extrait de cet enfer. Transport\u00e9 \u00e0 l\u2019h\u00f4pital je serais soign\u00e9 et suivi durant 8 jours, \u00ab intoxication C O \u00bb, quantit\u00e9 trop importante d\u2019enzymes solidement fix\u00e9s au sang. Le suivi m\u00e9dical a dur\u00e9 ensuite 21 jours et s\u2019est arr\u00eat\u00e9. Ensuite, j\u2019ai repris l\u2019habitude d\u2019absorber encore et toujours d\u2019autres fum\u00e9es nocives lors de nombreuses et nouvelles interventions et ce pendant 8 ans. \r\n \r\n\r\n Durant toutes ces ann\u00e9es, de 1973 \u00e0 1988, ces diff\u00e9rents produits, r\u00e9sidus de fum\u00e9es, gaz toxiques absorb\u00e9s, et nano particules se sont additionn\u00e9es dans mon organisme (poumons) de fa\u00e7on insidieuse. Aujourd\u2019hui, j\u2019ai la maladie de WALDESTR\u00d6M, pourtant je n\u2019ai jamais fum\u00e9 une seule cigarette de ma vie. L\u2019addition se paye un jour ou l\u2019autre. Le corps ne peut pas supporter autant d\u2019expositions nocives sans r\u00e9agir. Les sympt\u00f4mes Mars 2016 : une prise de sang r\u00e9v\u00e8le d\u00e9j\u00e0 un taux d\u2019h\u00e9moglobine seulement \u00e0 10,6. Plus tard, une an\u00e9mie importante se constate, paresth\u00e9sie des extr\u00e9mit\u00e9s, asth\u00e9nie \u00e9galement + diminution d\u2019\u00e9nergie g\u00e9n\u00e9ralis\u00e9e. 2018 : hospitalisation apr\u00e8s une nouvelle baisse d\u2019h\u00e9moglobine \u00e0 9,1. Transfusion de deux culots de sang, je suis hospitalis\u00e9 pour examens approfondis. R\u00e9v\u00e9lation des derniers r\u00e9sultats Une maladie de WALDENSTRO\u00d6M + Une Leuc\u00e9mie My\u00e9lo-monocytaire Chronique, atteinte au niveau des globules rouges. Le sang et la moelle \u00e9tant touch\u00e9s par ces maladies, il faut y rem\u00e9dier avec des traitements adapt\u00e9s, \u00e0 savoir : perfusion de RITUXIMAB + Chimio th\u00e9rapie durant 6 mois au C-H-U de POITIERS au sein du service canc\u00e9rologie. \r\n \r\nEn termes diff\u00e9rents, il s\u2019agit d\u2019un \u00ab CANCER de LA MO\u00cbLLE OSSEUSE \u00bb qui s\u2019est lentement d\u00e9velopp\u00e9 en moi, \u00e0 cause des fum\u00e9es toxiques, et qui peut, demain, tr\u00e8s mal se terminer \u00e0 64 ans. \r\nAujourd\u2019hui les choses ont \u00e9volu\u00e9, les soldats du feu ont des \u00e9quipements personnalis\u00e9s (A R I) lors des interventions ils sont mieux isol\u00e9s des fum\u00e9es, au retour d\u2019interventions leurs tenues sont d\u00e9contamin\u00e9es voir remplac\u00e9es. Ces \u00e9volutions sont indispensables en vue de prot\u00e9ger les sapeurspompiers dans l\u2019exercice de leur m\u00e9tier. Mais notre g\u00e9n\u00e9ration des ann\u00e9es 70\/80 a souffert, les fum\u00e9es nous ont fait beaucoup de mal. \r\n \r\nCordialement jo\u00ebl KICHOU \r\n \r\n \r\n \r\nJo\u00ebl Kichou N\u00b01 les Aubuges 16140 Villej\u00e9sus T\u00e8l : 06 30 49 96 62 Mail : etoilcline@yahoo.fr<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"josiane <\/div>\r\n
\r\n

josiane d.<\/h3>\r\n

JE suis mari\u00e9e le 22 juin 1968 dans l'Allier et j'ai 2 fils n\u00e9 en 1969 QUI VIT \u00e0 HONG KONG MARIE \u00e0 une chinoise ANNA et UN DE 1971 QUI \u00e0 2 fils 1 adopt\u00e9 \u00e0 HAITI qui va avoir 20 ans ! ET UN AUTRE DE 17 ANS ; \r\nj'ai \u00e9t\u00e9 coiffeuse puis conjoint d'Artisan 27 ans 0 st Pourcain sur sioule 03500. CHARCUTERIE \r\nj'aime la Nature , la Psycologie ; la Peinture ; les Fleurs .\r\nL'Amiti\u00e9 est important pour Moi .La nage et l'eau me comble et m'aide pour mes douleurs de NEUROPATHIE .\r\nMon inscription \u00e0 M\u00e9dicaliste date de 2003 , dans les premi\u00e8res !! avec Nadine d\u00e9c\u00e9d\u00e9e depuis . \r\nNicole Bastin tr\u00e9s pr\u00e9sente qui a pris la suite de son mari d\u00e9c\u00e9d\u00e9 fondateur de cette liste !!! M'a beaucoup aid\u00e9e et est devenue pour MOI une personne importante dans MA VIE, je m'y suis fait des AMIS Malheureusement certains et certaines nous ont quitt\u00e9s !MOI Je suis encore l\u00e0 !! 19 ans apr\u00e9s avec mes lots de soucis!! Mais pr\u00e9sente !! \r\nCette Pathologie bien singuli\u00e8re !! Car peut de malades ont les m\u00e8mes symptomes et les m\u00e8mes parcours !! \r\nMOI J'ai la forme hyperviscosit\u00e9 avec peu de PIC MAXI 32G\/L !! , j'ai eu 3 fois des chimio !! j'ai eu des PLASMAPHARERESES !! \r\nj'ai aussi une HYPERGAMMAGLOBULEMIE avec des perfs d'IGG CHAQUE HIVER ... Je pense depuis 2009 les avoir toutes eues !! LES DERNIERES HYQVIA me les remontent \u00e0 9G\/L de 1,90G\/L donc marchent bien !! \r\n\r\nJ'ai eu en 2001 des PERICARDITES \u00e0 r\u00e9p\u00e9titions =3 et fait 80 jours h\u00f4pital !!\r\npour finir la 3 \u00e8me d\u00e9couverte d'une MGUS !! et la 3\u00e8me PERICARDITE \u00e0 \u00e9t\u00e9 constrictive et donc on m'a enlev\u00e9 le PERICARDE !! et j'ai enchain\u00e9e sur WALDENSTROM !! Voil\u00e0 mon parcours ! En plus en 2012 une NEUROPATHIE provoqu\u00e9 par les traitements.\r\nPuis 2015 une PPR . Une belle fracture ouverte 28 d\u00e9cembre 2020 avec plaque et 2 vis qui m'a touch\u00e9 la lymphe et me pose des soucis !!! \r\nbon l\u00e0 R\u00e9mission derni\u00e8re CHIMIO FINIE JUIN 2020 RITUXAN DEXO\/ ENDOXAN. 2 EFFETS FLARE tr\u00e8s rare!! 1 plasmaph\u00e9r\u00e8se.!!et inflammation g\u00e9ante des cytocides !! L\u00e0 j'essaye de me remettre et esp\u00e8re AVOIR UNE LONGUE REMISSION !! LA DERNIERES AVEC CHLORAMINOPHENE ET RITUXAN = 11 ANS !!! je suis quelqu'un de POSITIF DONC \u00e0 l'aube de mes 70 printemps j'y crois!!! \r\nportez vous bien !!\r\nmes AMIES NINA ET COLETTE PERDUES EN 1 MOIS me manquent! \r\nJOSY remise \u00e0 jour 1er avril 2022 (pas un poisson d'avril )\r\nJ attends fin 2023 ma 4\u00e8me Chimio.\r\nAu TEP SCAN le produit \u00e0 pris au sein G .Comme ma m\u00e8re et ma tante ont eu \u00e0 ce sein G un cancer .Je dois avoir une BIOPTIE LE 16 OCT.Je suis confiante.Le Prof ROSSI attend le r\u00e9sultat pour le traitement. Mes cha\u00eenes l\u00e9g\u00e8res KAPPA ont doubl\u00e9es en 5mois \u00e7a m inqui\u00e8te plus de 230mg\/l...et le rapport tripl\u00e9. Mes IGM sont \u00e0 30Mg\/l..et IGG A1,40G\/L avant perf HYGVIA.VOILA tr\u00e8s fatigu\u00e9e et maux de t\u00eate. Parfois vertiges.\r\ndepuis je suis diagnostiqu\u00e9e d'un CARCINOME INFILTRANT SEIN G et doit subir op\u00e9ration d\u00e9s que j'aurais repris la forme!! ce qui est pas le cas !! pour le moment IMBRUMICA pleins effets secondaires commenc\u00e9 le 16 novembre .Portez vous bien .josy .\r\nPortez vous bien. Gardez le moral. JOSY<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Lauz\" <\/div>\r\n
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Lauz<\/h3>\r\n

Vivant \u00e0 c\u00f4t\u00e9 de Metz, je suis n\u00e9e en 1970 et je suis diagnostiqu\u00e9e Wald depuis 2005. Mon 1er traitement RDC a d\u00e9but\u00e9 \u00e0 l'automne 2017 suite \u00e0 des douleurs aux mains et une grosse fatigue. Depuis mai 2025, je suis sous Zanubrutinib (4 g\u00e9lules par jour).<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Lionnel <\/div>\r\n
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Lionnel LANDAIS<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"MARCUZZI <\/div>\r\n
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MARCUZZI D\u00e9lio<\/h3>\r\n

N\u00e9 en Juillet 1944\r\nDiagnostiqu\u00e9 W. en D\u00e9cembre 2020\r\nActuellement en traitement pour 6 mois \r\nMai 2021<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"marie <\/div>\r\n
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marie claude b.<\/h3>\r\n

bretonne ,m\u00e8re de 4 enfants, retrait\u00e9e depuis 1999\r\nasymptomatique depuis 2005\r\ngym, stretching, marche, j'aime la nature, la musique ,la lecture\r\nnos 7 petits enfants ont la plus grande place dans ma vie<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Marie <\/div>\r\n
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Marie SAMPER<\/h3>\r\n

Bonjour,\r\nJ\u2019ai 69 ans et j\u2019habite \u00e0 Montb\u00e9liard, dans le Doubs. \r\nEn Mars 2022 on m\u2019a d\u00e9couvert un lymphome B lymphoplasmocytaire de bas grade. Trait\u00e9e avec Rituximab avec de bons r\u00e9sultats. \r\n3 mois apr\u00e8s le traitement, r\u00e9cidive en janvier 2023. \r\nTrait\u00e9e avec Rituximab +Endoxan. \r\n3 mois apr\u00e8s, r\u00e9cidive en F\u00e9vrier 2024. \r\nJe commence aujourd\u2019hui 29 avril 2024 Zanubrutinib.<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Marie-Rose <\/div>\r\n
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Marie-Rose JOFFREDO<\/h3>\r\n

Bonjour j ai 79 ans dans 2 mois. A la suite de faiblesses et tremblements dans les jambes j ' ai \u00e9t\u00e9 diagnostiqu\u00e9e Waldenstrom en mai 2023\r\nDes 1er juillet traitement immuno doubl\u00e9 d'une chimio orale pendant 5 jours et ce toutes les 3 semaines\r\nActuellement toujours en surveillance h\u00e9mato et neuro\r\nJ'habite \u00e0 Vannes<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Mathilde <\/div>\r\n
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Mathilde boiron<\/h3>\r\n

N\u00e9e le 13 ao\u00fbt 1934. Etudes secondaires. Ancienne fleuriste. Aime les voyages et les arts.<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Michel <\/div>\r\n
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Michel FACQ PESTOURIE<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"michel <\/div>\r\n
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michel goudard<\/h3>\r\n

77 ans - Wald diagnostiqu\u00e9 en 2007\r\nSoign\u00e9 FCR en 2008.\r\nRetrait\u00e9\r\nFormation ing\u00e9nieur \r\nCarri\u00e8re : Informatique, puis Finance<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"michel <\/div>\r\n
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michel hascoet<\/h3>\r\n

J'ai 67 ans, pic monoclonal d\u00e9tect\u00e9 en 2014, diagnostic pos\u00e9 \u00e0 l'h\u00f4pital de Nantes en 2018, trait\u00e9 une premi\u00e8re fois \u00e0 Vannes en 2020 avec du R-Benda et en pleine r\u00e9mission (pic pass\u00e9 de pr\u00e8s de 50 \u00e0 environ 5). J'ai retrouv\u00e9 une vie normale.<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Nathalie <\/div>\r\n
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Nathalie HERBULOT<\/h3>\r\n

Nathalie, femme de 54 ans vivant \u00e0 Saint Sylvain pr\u00e8s de Caen \r\nTouch\u00e9e par la maladie de Waldenstr\u00f5m, je souhaite avoir des renseignements, pouvoir \u00e9changer avec d autres personnes elle m\u00eame diagnostiqu\u00e9 Waldenstr\u00f5m<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Olivier\" <\/div>\r\n
\r\n

Olivier<\/h3>\r\n

Bonjour, j'ai 54 ans, je suis mari\u00e9, papa d'une fille de 22 ans et j'habite en Gironde.\r\nDepuis 2021, je suis suivi pour une gammapathie monoclonale \u00e0 IgM.\r\nEn mars 2025, apr\u00e8s un malaise, on me d\u00e9couvre fortuitement un aspect de leptom\u00e9ningite c\u00e9r\u00e9belleuse lors d'une IRM c\u00e9r\u00e9brale et la ponction lombaire r\u00e9v\u00e8le une mutation MYD88 dans le LCR. (Suspicion d'un syndrome de Bing Neel)\r\nLe 29\/07\/2025, apr\u00e8s la biopsie ost\u00e9om\u00e9dullaire, j'apprends que j'ai probablement Waldenstr\u00f6m. \r\nLe neurologue m'annonce un suivi tous les 6 mois et aucun traitement pour l'instant. \r\nJe suis sportif et esp\u00e8re pouvoir poursuivre mes activit\u00e9s mais je reste tr\u00e8s fatigu\u00e9 depuis mon malaise du 09\/03.\r\nJe suis tr\u00e8s heureux d'avoir rejoint l'association et d'avoir pu \u00e9changer avec certaines et certains d'entre vous.\r\nMerci.\r\nOlivier<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Patrice <\/div>\r\n
\r\n

Patrice CAILLY<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Patrice <\/div>\r\n
\r\n

Patrice Ostermann<\/h3>\r\n

J'ai 55 ans et j'ai \u00e9t\u00e9 diagnostiqu\u00e9 en 2005 \u00e0 45 ans dans la force de l'\u00e2ge. J'ai eu 4 chimioth\u00e9rapies depuis: R-CHOP en 2005-2006, RFC en 2009, Bendamustine et Velcade en 2014-2015.\r\nJ'ai \u00e9t\u00e9 d\u00e9clar\u00e9 handicap\u00e9 en d\u00e9but du mois et \r\nmon \u00e9tat de sant\u00e9 se stabilise.\r\nJ'envisage peut-\u00eatre une invalidit\u00e9 avec une reprise du travail limit\u00e9e \u00e0 2 jours par semaine. Actuellement je m'investis dans l'association comme pr\u00e9sident.<\/p>\r\n <\/div>\r\n <\/div>\r\n

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\r\n \"Patrick\" <\/div>\r\n
\r\n

Patrick<\/h3>\r\n

<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Patrick <\/div>\r\n
\r\n

Patrick BAILLY<\/h3>\r\n

Mari\u00e9. 2 enfants. N\u00e9 en Mars 1961.\r\nDiagnostiqu\u00e9 en Mai 2023 avec des sympt\u00f4mes neurologiques ayant d\u00e9but\u00e9s mi-2022<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Paul <\/div>\r\n
\r\n

Paul Henri BURRION<\/h3>\r\n

N\u00e9 \u00e0 Mons le 10 juillet 1962, j'habite Namur, Belgique. \r\nMari\u00e9 \u00e0 Cl\u00e9lia L\u00e9onard. \r\nP\u00e8re de deux enfants Juliette et Vladimir. \r\nJournaliste TV \u00e0 la RTBF t\u00e9l\u00e9vision belge. \r\nCoach de rugby \u00e9quipe nationale U17 et U18.\r\nJ\u2019ai \u00e9t\u00e9 diagnostiqu\u00e9 le 25 juillet 2024 et actuellement en traitement chimioth\u00e9rapie.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Philip <\/div>\r\n
\r\n

Philip Nessling<\/h3>\r\n

N\u00e9 en Angleterre, a travaill\u00e9 dans la publicit\u00e9 pendant 35 ans, a d\u00e9m\u00e9nag\u00e9 en France il y a 7 ans, s'est mari\u00e9 avec Julie (en France !). Diagnostiqu\u00e9 en d\u00e9cembre 2019, sous surveillance et se sentant bien jusqu'\u00e0 pr\u00e9sent.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"philippe <\/div>\r\n
\r\n

philippe lemonnier<\/h3>\r\n

veuf,\r\nParisien puis Sarthois (et Manceau),\r\nfut entre autre correcteur puis graphiste dans l'\u00e9dition<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"pierre <\/div>\r\n
\r\n

pierre vital<\/h3>\r\n

Bonjour, je suis n\u00e9 en 1977 et mon Wald a \u00e9t\u00e9 diagnostiqu\u00e9 fin 2019. J'habite en Gironde et je travaille \u00e0 temps partiel therapeutique. Je suis musicien dans un groupe amateur (violon alto), et je fais pas mal de v\u00e9lo pour m'a\u00e9rer la t\u00eate et me d\u00e9gourdir les jambes !<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"pierrick <\/div>\r\n
\r\n

pierrick lamberton<\/h3>\r\n

Diagnostiqu\u00e9 Waldenstrom en 2017 .\r\nChimioth\u00e9rapie 6 mois avec complication car eau dans poumons .\r\nService pneumologie avec drain et ponction .\r\nOp\u00e9ration par la suite avec talcage poumon droit .\r\nSuis sous Ibrutinib depuis mais plaques rouges sur poitrine et maintenant .\r\nsur avant bras.On me propose nouvelle Chimio au Chu Brabois Nancy .\r\nGarde malgr\u00e9 tout un moral d'acier et profite \u00e0 fond des bons moments .<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"raymond <\/div>\r\n
\r\n

raymond lafarge<\/h3>\r\n

N\u00e9 le 07\/06\/1952 \u00e0 Mouthiers sur Boeme 16440.\r\nRetrait\u00e9 depuis le 01\/10\/2014.\r\nPr\u00e9parateur en Pharmacie de 1970 \u00e0 1980.\r\nTechnicien de laboratoire Qualit\u00e9 chez Lafarge Ciments de 1980 \u00e0 1995.\r\nResponsable du Laboratoire automatique chez Lafarge Ciments de 1995 \u00e0 2014.\r\nWald depuis Mars 2014 asymptomatique et non trait\u00e9 jusqu'\u00e0 aujourd'hui.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Sophie <\/div>\r\n
\r\n

Sophie ANCELIN<\/h3>\r\n

N\u00e9e en d\u00e9cembre 1959 j'habite \u00e0 6 km de TOURS diagnostiqu\u00e9e en avril 2024 chimio pr\u00e9vue les 10 et 11 juillet. Ayant d\u00e9j\u00e0 eu un cancer et surtout un traitement chimio et rayons en 2006 je ne suis pas rassur\u00e9e du tout.\r\nPour l'instant mon sympt\u00f4me c'est l'an\u00e9mie donc je dors beaucoup. A suivre.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Thibaut\" <\/div>\r\n
\r\n

Thibaut<\/h3>\r\n

m\u00e8re WD d\u00e9clar\u00e9 \u00e0 50 ans\r\nWD depuis 2003 \u00e0 42 ans\r\nchimio 2003-2004\r\n r\u00e9mission jusque fin 2011\r\ndepuis traitement par Imbruvica : en r\u00e9mission depuis mais :\r\n- je suis vite fatigu\u00e9\r\n- incapable d'\u00e9crire (tremblement mains, jambe droite surtout)<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Thierry <\/div>\r\n
\r\n

Thierry RAYNAUD<\/h3>\r\n

Je suis retrait\u00e9 j\u2019ai 63 ans je suis tr\u00e8s sportif j\u2019ai pratiqu\u00e9 longtemps le football ensuite la course \u00e0 pied et le cyclisme que je pratique encore j\u2019adore aussi la musique le cin\u00e9ma les voyages les balades en for\u00eat la montagne et la Corse.\r\nJ\u2019\u00e9tais suivi pour un Wald asymptomatique depuis Mars 2020 suite \u00e0 un bilan sanguin montrant un taux anormal de lymphocytes mais \u00e0 la suite d\u2019une ponction de moelle osseuse le 16 f\u00e9vrier 2023 il a \u00e9t\u00e9 d\u00e9cid\u00e9 qu\u2019\u00e0 la date du 28 f\u00e9vrier 2023 je rentre au CHU de Poitiers en protocole th\u00e9rapeutique suite \u00e0 une augmentation de ma spl\u00e9nom\u00e9galique accentuation de thrombop\u00e9nie (103G\/L)et d\u2019une pr\u00e9sence de cryoglobuline en faible concentration.\r\nEn Juillet 2020 j\u2019ai aussi eu une pose de 4 Stents suite \u00e0 des douleurs thoraciques et un test d\u2019effort pathologique.\r\nAutant dire que depuis ma retraite en d\u00e9cembre 2019 je ne suis pas vernis !!!<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"ulrika <\/div>\r\n
\r\n

ulrika bjork<\/h3>\r\n

Suedoise en France d\u00e9puis 25 ans, travaille toujours \u00e0 ma boutique \u00e0 P\u00e9zenas (34). \r\nAime des animaux, j'ai deux chiens recup\u00e9res de la rue et des chats.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Val\u00e9rie <\/div>\r\n
\r\n

Val\u00e9rie MOYSAN<\/h3>\r\n

je partage ma vie avec un mari ,quatre enfants \u00e0 moi + ceux de ma classe maternelle au milieu des for\u00eats de la haute Saintonge ! diagnostiqu\u00e9e et trait\u00e9e depuis novembre 2022, je cherche encore les moyens qui me feront retrouver un bon stock de d\u00e9fenses immunitaires, mais je ne d\u00e9sesp\u00e8re pas de retrouver une pleine forme !<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"VEILLY <\/div>\r\n
\r\n

VEILLY jean fran\u00e7ois<\/h3>\r\n

Retrait\u00e9, ag\u00e8 de 73 ans, en 2014 ,apr\u00e8s une fatigue persistante, \u00e9puisement, mon g\u00e9n\u00e9raliste m'oriente vers une h\u00e9matologue ,soup\u00e7onnant un my\u00e9lome .d\u00e9couverte de la maladie de WALDENSTROM;\r\nJe ne ressentais aucun autre symptome .J 'ai tr\u00e8s bien r\u00e9pondu au traitement pendant 18 mois ,puis en d\u00e9but 2017,j'ai progressivement commen\u00e7\u00e8 \u00e0 ressentir une fatigue intense ,perdre de l'audition,avoir des troubles de concentration,perte de l'\u00e9quilibre, etc ,La ponction lombaire de juillet 2018 \u00e0 confirm\u00e9e le diagnostic de "syndrome de BING-NEEL" ,traitement par IBRUTINIB ,en 48 H,tous mes symptomes avaient disparus,je me retrouve comme avant le d\u00e9veloppement de cette maladie;<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"V\u00e9ronique <\/div>\r\n
\r\n

V\u00e9ronique BERTHELEY<\/h3>\r\n

Bonjour \u00e0 tous, alors nous s'est mon mari Alain 60 ans qui vient d'\u00eatre diagnostiqu\u00e9 d\u00e9but ao\u00fbt 2024 suite \u00e0 plusieurs pneumopathies donc pour l'instant nous sommes un peu dans le flou car nous n'avons pas eu beaucoup d'infos ,lors du diagnostique. Ce site a \u00e9t\u00e9 une vrai mine d'information pour nous.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Vincent <\/div>\r\n
\r\n

Vincent PITARD<\/h3>\r\n

Diagnostiqu\u00e9 en 2024 (59 ans) suite hospitalisation pour une cruralgie aigu\u00eb avec une inflammation inexpliqu\u00e9e.\r\nCroissance lente IgM sur les 9 premiers mois 2025 puis acc\u00e9l\u00e9ration fin 2025. Fatigues et acouph\u00e8nes r\u00e9currents sur 2025 puis vertiges quasi quotidien en D\u00e9cembre 2025. Je ne me sens pas malade mais mon corps veut me montrer le contraire \ud83d\ude00. \r\n2 \u00e9changes plasma efficaces en d\u00e9cembre pour faire chuter le taux d\u2019IgM de 40 \u00e0 20g\/l permettant de partir sur un protocole immuno (rituximab) + chimio (bendamustine) d\u00e9but Janvier 2026. Tout s\u2019acc\u00e9l\u00e8re mais ce traitement est n\u00e9cessaire pour revenir dans un \u00e9tat physique acceptable.<\/p>\r\n <\/div>\r\n <\/div>\r\n

\r\n
\r\n \"Waldenstr\u00f6m <\/div>\r\n
\r\n

Waldenstr\u00f6m France<\/h3>\r\n

Je vis en r\u00e9gion parisienne\r\nDiagnostiqu\u00e9e WALD en 2005 lors d'une prise de sang : pr\u00e9sence d'agglutinine froide. Comme ma m\u00e8re.\r\nTest combs +\r\nDepuis mon dernier traitement en 2008, mon an\u00e9mie est stable.\r\nCela me permet de vivre sans penser \u00e0 Wald. \ud83d\ude42<\/p>\r\n <\/div>\r\n <\/div>\r\n <\/div>\r\n \n<\/div>\n","protected":false},"excerpt":{"rendered":"

LES MEMBRES Les membres de notre association sont dispers\u00e9s aux quatre coins de la France mais comme notre association regroupe toutes les personnes francophones atteintes de la maladie de Waldenstr\u00f6m, […]<\/p>\n","protected":false},"author":72,"featured_media":0,"parent":0,"menu_order":7,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_uag_custom_page_level_css":"","site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center 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