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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 7
I have been visiting this site on and off for a while i have written about my sister who is 30 and has this awful disease she has had her last lot of chemo but all her results are like lainey a and i would like to speak to her i saw she had her one year mile stone etc and wondering if anyone knows how she is going. im not good on the computer and maybe i didnt search it right but i cant find any recent posts. i will talk to anyone who can help with advise re this awful disease. my sister was crying tonight its her daughters 5th birthday and she is afraid she wont be here for her 6th but i wont to find a treatment that will make it happen.
Hi my sister has bone mets hers is in her thigh 16 x 12 they also will not operate she has only in her liver and thigh now gone to her spine. only given her chemo which has ceased and one lot of ray on her hip willnot do the spine. i am like you no one will give answers to questions of why cant you do this or that. my sister is 30 and has two children aged 2 and 4 they have told us there is nothing else they can do. i read this site each day to hope there is a new treatment. please let me know what they are doing for you mum.
Lauren sorry to hear about your dad my sister has this awful disease refer to my introduction. it is very overwhelming and at the moment we were told 11 months from diagnosis for her and she is only 30 like everyone says dont give up and fight ask questions etc i found too that there is not much information so i use this sight and tried to read as many peoples things that i can to see the different treatments etc. i put my sisters details of her diagnosis (eg the big words) in the search section and then read anyones blogs with similar stuff. this unfortunately for me gave me many answers to questions that were unanswered. my sister too was told pallative and i hate that word but thats what they use she just had her first wave of chemo and her liver shrunk 20% the drugs she used were listed on magic quote. she just had ray for her mets on her bone that are over 16cm and the ones in her back they wont touch. unfortunately i need to go but i iwll try and talk to you soon. hang in there keep fighting. and good luck.
hi everyone havent been on for a while have been working and taking my sister to ray treatment everyday. cause i live in the country it takes me 1 hour to get to her then 1 and half hours to get her to ray treatment for like you would all know a 10 minute appointment. but hey its got to be done. good news is she loved the concert so that was great and we had a good time. we are also having a big fundraiser on saturday for her to fly her to queensland with her kids so i hope it goes well. i feel awful not being able to read other peoples situations out there but a the moment i stuck for time with treatments work and trying to be a mum to my two little ones so if any of you read a new person with similar stuff to my sister please feel free to tell them about me. anyway must go. to all the careers i give you a big hug to all the people who are ill i pray for you.
Thank you to all who have replied and given me rays of hope. The advice is great. I am taking my sister to a concert tomorrow night and hopefully that will cheer her up. she is being so positive and thats great. after all the stats are just that. I am going to ask for second opinions though and also question why things cant be done, in the long wrong the worst that can happen is they can only say no, but you never know one might have another idea. To all of thankyou and to those that are fighting this alwful disease never give up and to the careers i send a big hug.
Thanks everyone for your replies advice and wishes. As many of you mentioned i have now joined the family and like you all its not one that you wanted to join but its one that you had to. i will think of this new family as the positive part of this bloody awful disease a place where i can vent my anger frustration questions and also the MILESTONES that my sister will achieve. I WILL NEVER STOP FIGHTING FOR HER and will search constantly for more treatment options. however i do understand that it is her disease and she needs to be in control and that i will support her with all decissions.
unfortunately i have lots of preparing to do today in the next week so i will try and pop on as much as i can unfortunately because she needs a career 24 hours a day my time is spent juggling time with her my family and work, much of which all of you would know. what i am rambling on about is please dont think i wont be reading what you write and that i wont be looking up the adivice cause i will but i may not get to write a thank you or a reply straight away but please keep the information coming. (hope that makes sense)
thanks again to you all its a wierd feeling to have connections with people on the other side of the world but its calming to know we are not alone in this time of sadness. BUT HOPE IS ALL WE HAVE AND NO ONE WILL TAKE THAT AWAY FROM ME AND I WILL HOPE FOREVER
hi everyone my sister is 30 years and was diagnosed in oct 2009 with intraheptatic cholangiocarcinoma with mets in her thigh and spine. she started chemo and has had two rounds and starts ray treatment for thigh tomorrow. she has been in a wheel chair since being diagnosed because the cancer in her thigh is >16 cm and there is no bone left. she has two children aged 4 and 2 and was told today that only 50 % of people survive past 11 months from diagnosis. they have told her she cannot be operated on and that she can only complete this last wave of chemo. i feel so helpless i am her big sister. i found your site and would love any advice of treatment etc. i have all her records and will fax to any hospital in the world and will go anywhere for treatment. we are in australia. i am still navigating the website and understand that there may be similar cases but i would love any advice or suggestions. her doctor is wonderful and i know being told the above sounds bad and it is but we all thought she had 5 years minimum and 10 years at the best etc so today when we said we want the truth it hit us hard but the doctor said its only statistics and we said stuff them she will be the 1% that survive. the time on my login etc is wrong i was too upset to think about the time zone thing but will fix it up.
Posts found: 7
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