Saludos hace como un año me diagnosticaron con Amy Aún se muy poco de todo...
watch the video...French Subtitles on the CC bar https://vimeo.com/3358025
read the booklet http://amyloidosissupport.org/AmyloidAware_French. pdf
Never stop fighting, receive care from Amy specialists and keep positive. There is great support here.
Donde consigo el folleto? Viene en español?
Que tipo tienes? De eso depende mucho si hay tratamiento o no. Yo soy AA y lo tengo en el riñón. No hay tratamiento para este tipo solo diálisis y transplante
Where do you live? It matters because correct diagnosis is essential. You say that you have been referred for chemo but only AL systemic amyloidosis is treated with that. You mention that your kidneys are affected and a liver biopsy confirmed amyloidosis. The kidneys are affected in AL amyloidosis but also in hereditary and ALECT2 amyloidosis. ALECT2 is found in older people and ethnicities such as people of Hispanic origin as I asssume you are, and can be wrongly diagnosed as AL systemic amyloidosis. If you have one of the hereditary types or ALECT2 neither is treated with chemo. Transthyretin a protein found in the liver, produces amyloid in hereditary Amyloidosis which can affect the kidneys. ALECT2 is caused by the protein LECT2 produced by the liver and affecting the kidneys and can affect the liver itself too. If you have either of those chemo would be harmful to you. AA or secondary amyloidosis has no real connection with the liver. Please try and see a specialist Dr. To be sure of an accurate diagnosis, your biopsy sample(s) need(s) typing by sending it/them to Mayo. Tell us where you live and someone in this group can advise you who best to see. Would someone please translate this into Spanish for Maria?
video had Spanish subtitles and here is the booklet in spanish http://amyloidosissupport.org/AmyloidAware_Spanish .pdf
we see Alect2 in Egyptian and Indian (from India) as well as native Americans in USA and First Nation people of Canada. It is not from the liver but from a novel newly found protein. We have a group on facebook for Alect2 and have a group of researchers working on it headed up by Chris Larson and Nelson Leung. Dorothy Sintas is the head of that group. They are not sure about the hereditary aspect of it. It does appear in some families but that could be because it it so prominent in certain populations.
Here is a link to our website which lists resources, treatment centers and an AL amyloidois brochure in Spanish: http://www.amyloidosis.org/resources/
Yes I have an Indian friend whose Dad from the Punjabi region. He has it. My friend is in contact with Dorothy and is a member of the group you mention. No not from the liver but "produced by a protein mainly produced by the liver and called leukocyte chemotactic factor 2 (LECT2). LECT2 is a normal bloodstream protein, mainly produced in the liver" and as you say it is "probably not hereditary". The NAC has 1 ALECT2 patient. They say "In US studies it accounted for 2.5-10% of all cases of kidney amyloidosis and 25% of all cases of liver amyloidosis", so am just wondering about Maria's diagnosis. She is in Puerto Rico so very difficult indeed for her. There is so little info on ALECT2 , tho' there is some in your multilingual booklets. There is also this from the NAC, saying much the same as your booklet, plus a bit more. http://www.amyloidosis.org.uk/other-types-of-amylo idosis/alect2-amyloidosis/.
Vivo e St. Cloud, Fl. Y me dijo el oncólogo que mi Amyloidosis es la primaria o AL . Pues no se sabe por qué la tengo. Nadie que yo conozca de mi familia la ha padecido, no he tenido enfermedades inflamatorias, etc... me han hecho tres biopsias , una del hígado, una del riñón y ahora la de la médula ósea. Todavía no tengo órganos dañados pero si tienen Amy , el hígado y el riñón.
Gracias a todos son muy lindos en ayudarme, bendiciones para todos.
Maria... as no-one in your family has had the disease that would seem to rule out suspicion of the hereditary types. With no iinflamatory disease that rules out secondary amyloidosis too. Unless the oncologist is a specialist Amyloidosis Dr he may not know about ALECT2. It was only discovered in 2008. There is no treatment available for it yet. If the bone marrow biopsy tests positive for AL amyloidosis then that is an important bio marker. If it doesn't your organ biopsy samples should be sent to Mayo for typing, because sometimes a diagnosis of AL is incorrect. ALECT 2 has been MISdiagnosed as AL. If that happened in your case chemo would be very harmful to you. Have you had a free light chain blood test? That is a standard test for AL systemic amyloidosis which used to be called primary amyloidosis. If elevated free light chains are found to be circulating in the blood in the free light chain blood test that is an important bio marker for AL or primary amyloidosi. Free light chains are sometimes also seen in ALECT2. I know someone with ALECT2 who has elevated free light chains. ALECT2 is a quite a slow to develop form of amyloidosis which could be the reason why you do not seem to have organ damage. The person I know of diagnosed with ALECT2 has amyloid in his kidneys shown in a biopsy which was sent to Mayo for typing. He has good kidney function so far as ALECT2. does not progress rapidly. Are you of Hispanic ancestry, because ALECT2 is seen in Hispanic ethnicities? ALECT2 is a very rare and recently discovered form of amyloidosis found in older people, predominantly men but it was first discovered in a woman and there are known cases in women but there more cases diagnosed in men thus far. There are only approx 220 known cases worldwide. If you have been diagnosed with AL but no organ damage has shown itself yet, that will be because you have very early stage disease. However if it is definitely diagnosed as AL by the free light chain blood test, and bone marrow biopsy then without chemotherapy it will progress. Do read the sections in the Spanish booklet on AL and ALECT2 very carefully. Show the booklet to your oncologist. Print off the information on ALECT2 from the NAC link I posted above and show that too your oncologist too. Ask someone who is bilingual to translate it into Spanish for you. You must also try to see an amyloidosis specialist DR as soon as possible. Only a specialist Dr knows how to diagnose it correctly and treat it properly if you have AL that is. For ALECT2 there is no treatment.
Maria says she lives in St Cloud FL. Please, please, please can someone suggest a specialist Dr to her.
Dr.Taimur Sher at Mayo/Jax or James Hoffman at University of Miami
AL , según el médico está sobre mi riñón y mi hígado. Pero aún no los ha dañado.
Xxxxxxx Yzzzzzz , tiene mucho sentido para mí lo que escribe aquí . Voy a hablarle de esto al Dr., el es especialista en leucemia, dice que en ese hospital , lo más que se puede ver es un caso de Amy por año. Si soy hispana, de Puerto Rico.
That is the problem Maria. Drs who are not Amyloidosis specialists do not know enough about it. The fact that you are from Puerto Rico, and Hispanic origin, ALECT2 should be considered. Your Dr could be right that you have AL primary amyloidosis. To be absolutely sure can you see one of the Amyloidosis specialists Muriel has recommended above.....Dr.Taimur Sher at Mayo/Jax or James Hoffman at University of Miami. Are they near enough to where you live in Fl? The wrong treatment would be harmful to you.
Xxxxxxx Yzzzzzz , gracias.