hi my sister 30 years has been told she has 11 months
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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.
Hi Shonny,
I hope that you and your sister have a great time at your concert and that it does indeed cheer your sister up. I am sure that you both will have a great time! And yes you are right, never give up!
My best wishes to you both,
Gavin
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.
Shonny:
Welcome to the best CC site on the internet. I’m certain that you, like me, didn’t really want to become a member of this site.
Your sister is lucky to have you in her corner! As a caregiver to my husband Tom who is also fighting this terrible cancer, the one thing that I can tell you is to take it one day at a time and be grateful for the time that you have with your sister. One never knows what twists and turns this cancer is going to take.
One day you may get good news and the next day it may not be so good. But we have to take the good with the bad.
My advice would be:
1) Do all the research you can, the internet is wonderful for that.
2) Write down all the questions you can think of. There is no such thing as a dumb question
3) Ask all those questions of your sisters doctors
4) Never take no for an answer, there is always something that can be done
5) Think outside the box and ask your sisters doctors to do the same
6) Don’t be afraid to seek 2nd and 3rd opinoins. Your sister’s doctor may be wonderful but you need to see if other doctors have the same opinoin as he/she does. You may be surprised!Case in point for number 6 on my list. Tom’s original oncologist told him to go home and get his affairs in order and that he would give him 6 months. His reoccurance of a tumor is inoperable. He said that chemo and radiation would not help. His bilirubin level was at 9.2 at that time.
After getting more opinoins, etc. he started on radiation and his bilirubin level kept climbing. At his all time high of 24.7 and with an external drain tube his bilirubin level started coming down. After 28 radiation treatments his bilirubin level in now down to 8.1, his yellow color is almost gone. His radiation oncologist has told us that the tumor has shrunk. Next step is to stent the liver and then he starts on chemo. We are going for broke on this fight!
Prayers are coming your sister’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Shonny….I would also like to chime in and welcome you to our site. I am hoping for the radiation to be of great benefit to your sister and that the pain medication will give her some relief. In regards to you living on the other side of the world: I guess, that goes both ways as we are living far away from you. But, this does not matter because, the Cholangiocarcinoma Foundation is a borderless Foundation and home is wherever we are. I am glad that you have found us.
My best wishes are coming your way,
MarionHi,I think if you have a wonderful doctor you should stick with him.I also think you should accept that your sister has advanced cancer and may not have long to live.This doesnt mean you cant hope for a miracle but you need to have a realistic outlook. The treatment she has had sounds right to me,and I am hoping she is ok painwise ,particularly with that tumour in the leg which sounds terrible for her.
She needs some quality time with family and particularly her kids and you need to talk and say all the important things.Does she have a partner?There is a lot of community support available so make sure you access it,it might help to talk to a counsellor/psychologist too.We all need all the help available!
JanetHi Shonny,
Don’t worry at all if you can’t post that much, we all know what you are going through right now. And I love what you say about never stopping fighting and how no one can take hope away from you. I hope your sister achieves many milestones indeed!
My best wishes to you and your sister,
Gavin
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 FOREVERHi Shonny,
Welcome to the site, although I am sorry that you have to be here and also to hear your sisters diagnosis. I hope you will come back and ask questions as I know that you will get answers from us all. And venting here is also good as we can relate to how you feel.
My dads treatment was PDT so perhaps that is something that you could speak with your sisters doctors about for her primary tumour. My dads CC was deemed inoperable from diagnosis and that is why he had PDT.
I know it is hard, but please don’t give up hope. Your sister will need you there with her throughout all of this.
My very best wishes to you and your sister,
Gavin
Shonny,
You have already gotten a lot of good advice and searching the site will give you even more. I am sure you will be hearing from Janet as she is in Australia and is a nurse. There are a few others who post here from Australia. Welcome to our “family”. I know it is not where you want to be, but it is the best place to be for support & help when dealing with this rare type of cancer. The people on this site are all so kind & understanding and willing to help with support, information or just a shoulder to cry on when you need to vent & let your feelings go. Keep coming back. We are all here for you.
Wishing for the best for your sister and everyone who loves her.
With Love & Hugs To You All.
Darla
Dear Shonny,
The time ahead will be tough for your family and I am very sorry for your sisters diagnosis. I am going to be blunt, and I am also sorry for that, but we need to know what is in front of us so we can handle it.You sister will not qualify for surgery while she has cancer in her bones. Other treatments can help with the tissue mets, but bone mets are tough. Radiation is sometimes successful. Your sister might be one of those that it works wonderful for, we all hope that for her and her family.
Treatment options for the other mets and main tumor will depend on their placement. We have a member here who had 70% shrinkage with chemo. We have had members try several treatment options, one after the other, some with amazing results as each treatment zapped a different tumor, some with no results.
The truth is statistics are statistics. They show what is likely to happen, not what will happen. Your sisters case sounds tough. But that doesnt mean give up, but it means to be realistic while you keep that hope.
Your sister needs to decide how hard she wants to fight and balance these needs and desires. I am not trying to be negative, but there will be difficult decisions ahead and it is important your sister feels like she is as in control of them as she can.
I personally dont listen to much to statistics except that I am trying to get my things in order. Like you I believe someone has to be that 1%. Hang on and let your sister do the best she can. I firmly believe things are coming down the pipeline. I try to look at my life now in chunks. I was diagnosed 3 years ago at age 32. I am now a big walking tumor and I will be undergoing a very high risk procedure soon. I think, well it might give me 3 more years. Then in 3 years something else might come along. I know there is no cure now, but there might be later if I hold on enough. I am not explaining myself well and babbling at that.
I guess I should just say to be realistic, have hope, and dont forget we like to prove doctors wrong.Hugs,
KrisYou do feel helpless in the beginning. It’s such a shock and you just go into panic mode. You will calm down and then you will just start doing whatever you can to help your sister. Regardless of the outcome. My sister was 42 and she survived 10 months after being diagnosed. She also had two children. You will make it. You will be there for her.
Dear Shonny, Welcome to our wonderful family but so sorry to hear about your sister. Your doctor sounds especially good as well. We have a great member in Australia, Janet and I would imagine she will pop in soon and can maybe have some ideas for you right in Australia. We also do not listen to statistics as we have had members surviving years after their diagnosis. Good luck and please keep us posted about your sister.
P.S. One of our heroes, JeffG had mets to the spine and if you go to his posts using our SEARCH site at the top of the page you will get some ideas on what he tried.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.
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