I am Bixilon .
Hi. First of all, excuse my English. I would like to know if there are people with imbruvic treatment in the first line having 17p. And how long it has been with this Lei treatment that the forecast is wrong9 in this case. And I am very disappointed. Thanks
Quite a few members are taking Imbruvica, some as their first treatment, per these posts: healthunlocked.com/search/i...
I don't understand your sentence about the forecast being wrong or why you are very disappointed. Could you please try and explain in Spanish?
Neil
hola Aussie Neil ! Me refiero a que he leido sobre los pronosticos en las personas que tienen delacion genetica del 17 p. Y que es desfavorable. Y yo pense en en contrar a otras personas con mi condicion que toman imbruvica 420. como primer tratamiento. Y saber de sus experiencias. Gracias por responderme
Translation for those who can help our Spanish speaking member "
I mean I read about the prognostics in people who have the genetic del17p. And that is unfavorable. And I thought of opposing (contacting?) other people with my condition taking imbruvic 420. as the first treatment. And know their experiences. Thank you for answering me"
I have been taking ibrutinib for 5 years. It was my frontline treatment with 17pdel and TP53. I am in clinical complete remission since January 2015. Life is good. -- La Verne
Que alegria ! Y que esperanzador! Gracias! Yo empece solo hace un mes y este es mi primer tratamiento despues de 7 años de espera y control. Por ahora mis efectos secundarios son un poco de dolor de huesos . Acidez y el pelo se puso feo . Opaco y finito. Voy a tratar de ver como puedo solucionarlo. Gracias nuevamente
Has tenido efectos secundario? .fiebre ? Gripe? Has tenido alguna vez que interrumpir tu tratamiento? Y ahora.en la remision sigues tomando ibrutinib? Disculpa tantas preguntas? Gracias
YOU WROTE:
Have you had side effects? .fever ? Flu? Have you ever had to interrupt your treatment? And now, in the remission, are you still taking ibrutinib? Sorry so many questions? Thank you
ANSWER:My blog: DrLaVerne.blogspot.com
Yes, I have had side effects, but eventually all went away except for the brittle nails.
Sí, he tenido efectos secundarios, pero finalmente todos se fueron excepto por las uñas quebradizas.
Yes, I had had to interrupt my treatment, as per my doctor's instructions when I had colonoscopy, etc.
Sí, tuve que interrumpir mi tratamiento, según las instrucciones de mi médico cuando tuve colonoscopia, etc.
Yes, I still take ibrutinib every day. It works for 24 hours to keep the cancer from progressing.
Sí, todavía tomo ibrutinib todos los días. Funciona durante 24 horas para evitar que el cáncer progrese.
Gracias AussieNeil ! Has sido muy amable en traducirme . Si quiero contactarme con personas en situacion similar a la mia. Estoy en mi 4 semana de ibrutinib, que por suerte tolero bien. Con efectos secundarios minimos, por el momento. Saludos
You've been very kind in translating me. If I want to contact people in a situation similar to mine. I am in my 4 week of ibrutinib, which luckily I tolerate well. With minimal side effects, for the moment. regards
Google Translate de español a inglés
google.nl/search?q=translat...
Google Translate from English to Spanish
Hello to you as well, Bixilon! Sorry, but I don't speak Spanish. I've been on Imbruvica for about 2 years, and doing amazingly well. I too am 17p deleted, and my lymph nodes were huge before beginning the drug. They went down in size literally in days. I am stable for the moment. The only side effects I've had are brittle fingernails and a tendency to bruise. For me it has been a miracle. It is also important to have a doctor who is a specialist in CLL, if you don't already have one. Best wishes...Karen
Me alegra tu respuesta al ibrutinib. 6 ojala sigas en la misma direccion
Hi Bixilon,
Ibrutinib por sí solo rara vez es una cura para CLL, pero para muchos pacientes puede proporcionar varios años de alivio de muchos síntomas de CLL. Con su eliminación de 17p Chemo como FCR o BR no le dará ayuda, pero las drogas como Ibrutinib, Idelalisib y Venetoclax debe ser muy bueno.
Si cada uno puede agregar algunos años a su vida y hacer que usted se sienta cómodo, eso es bueno. Si uno de ellos le da excelentes resultados y remisión completa con enfermedad residual mínima, tal vez que va a durar muchos años.
Buena suerte
Ibrutinib alone is rarely a cure for CLL, but for many patients it can provide several years of relief from many CLL symptoms. With your 17p deletion Chemo like FCR or BR will not give you help, but the drugs like Ibrutinib, Idelalisib and Venetoclax should be very good.
If each can add a few years to your life and make you comfortable, that is good. If one of them gives you excellent results and complete remission with minimal residual disease, perhaps that will last for many years.
Good luck!
Gracias.
Hello
Like you I have 17p .I have been on Ibrutinib for 26 months now as a first line treatment .It is still doing its job and I have been told by my consultant that if it fails there is always something else to take its place .
Please don't read too much on the internet .Until I joined health unlocked I thought I wouldn't see the following month let alone year .
We have a lot to be thankful for now with all the amazing treatments that are becoming available even to us with 17 p
Take care
Sorry this isn't n Spanish
Brenda
Gracias Brenda. Te entendi perfectamente. Estoy haciendo igual a tu consejo porque sino me doy por vencida antes de empezar y no me lo permitiria.
These questions and answers have been very helpful to me since my husband is 17p del. Recently diagnosed and no symptoms. I just appreciate what to expect the first treatment could be.
Gracias and Thank you!
Linda
Hola linda ! Si algunos testimonio son esperanzadores. Este es mi primer mes de Imbruvica y es mi primer tratamiento. Fui diagnosticada hace 7 años. Y te cuento que por el momento solo tengo sintomas bastante tolerables. Mis globulos blancos descendieron de 110.000 a 47000. En estos 30 dias. Ojala esto siga asi.y lo pueda mantener mucho tiempo. Suerte para tu marido
Hola, I used Google Translator! Wow, I am so happy for your good report of your white count. I so hope you and my husband have continued good health. When I look at the cost of the medication for us, I think my husband should work another year or two! Haha
Linda
Gracias Spacee. Ojala tengamos una buena salud.
El estado no le provee la medicacion? Aca en Argentina lo hace por medio de la seguridad medica. Teniendo el 17p. Justifica que entreguen Ibrutinib en forma gratuita. Suerte !
Hola Bixilon. Esa es una buena noticia para usted y la medicacion que se la entrego a su casa. No es asi en los Estador Unidos. Complicado. Si usted es la edad de mi Marino, pagariamo $6700 al mes. Podriamos obtener alguna ayuda a traves de la compania de drogas. En este moments estamos investigando una demanda contra Monsanto, la marca de roundup que mata a las malas hierbas, Mi espousa lo ha usado durante decadas. Roundup se ha vinculado a CLL. Esperanto lo mejor!!
Oala asi sea . Suerte!
Ojala propere tu juicio!
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