Small study showed high accuracy but hurdles remain, two experts said
by bats1026 on Sun Apr 29, 2012 10:30 PM
Over the past 4 days my dear friend has been diagnosed with bile duct cancer and is being sent home because there are no more options left on the table. She didn't want to know how long she has but I do. What can you tell me?
by Solutions on Tue May 01, 2012 05:17 PM
Dear Bats1026....Well Bats, it's none of your business how long she has. If you want to do anything good for your friend, honor her wishes. Stay with her and comfort her.
By the way...you asked, "What can we tell you about the time your friend has on this beautiful earth" Well Bats1026 the answer is "NOTHING".
And allow me to say one more thing...What on earth motivated you to ask such a question...do we look like GOD to you.
Read you message again...and if you can not understand what I am saying...you need more help then your dear friend.
Think about it,
Leonard (Solutions) from Alamo California
by bats1026 on Tue May 01, 2012 06:06 PM
I am in shock with the way in which you have responded to me. You have written numerous kind responses before and I never would have thought that you would attack me like this.
Who do YOU think you are? How dare YOU respond to me like that when I was just seeking guidance. I thought that someone caring would understand my concern and confusion and help me comprehend what my dear friend was up against.
by tomco727 on Tue May 01, 2012 08:57 PM
Bats -welcome to to message board where many of us come for answers and support ,right now your friend without a doubt is devastated by the diagnosis and very depressed and In a while may feel she wants a second or third opionon -maybe she was not in a top notch facility like -John hopkins,Mayo clinic or many others -it is hard to say without knowing why the drs said no Hope ,was it an aborted whipple surgury ,or found in many other areas -if it was just an average hospital that does not specialize in pc -just can obtain a copy of the scans and send them to John hopkins or there is a new study mentined on the pancreatic board this morning -just use the drop down box above-a new study that is looking for people that have not been treated ,in one or more locations ,anyway it is your friends decision,and her fight we have to respect there choice -even though it hurts us too.nobody wakes up and says wow what a nice day and browses the cc website -no our lives have been touched by this monster and it will never be the same -what helps me the most on cc is I take the good positive constructive information and support and use it and I just leave the negative mean spirited stuff here ,with its rightfull owner take care and good luck to you and your friend Tom
by bats1026 on Wed May 02, 2012 12:23 AM
Thank you for your kind response. After receiving such a horrible response from Leonard-Soluitions I was afraid to open yours. The only reason I had asked about a time line was so I could help cross off a few things on my friend's bucket list. Leonard made me seem like a monster! My friend was at MD Anderson in Orlando and then at Florida South and both teams confirmed that the cancer had spread to other organs. I will share your info about John Hopkins and the new study. Once again I thank you for giving me advice instead of comdamnation.
by Solutions on Wed May 02, 2012 01:33 AM
My Dear Bats1026,
You are in shock in in which the way I responded.
What did you want to hear from me...your friend has 3 weeks, no she has 2 weeks...no she has 2 years...no she has 5 years.
Just what did you want to hear...
Read my first paragraph.
I did npt attack you...I tried to get you to think a little. You asked a foolish question...
Who do I think I am...well if you wake up you will see I am your best friend with a honest asnwer. Do you want to lie to your friend...You and the doctors have no idea when your friend will pass...so why do you want me to play GOD for you. You are seeking guidance....what guidance are you looking for....Leonard said you will die in 6 months and then when your friend passed away in 6 weeks you blame Leonard....that's the doctors say NOTHING.
You want to know what your friend is against....she in ending her journey of life....and want to play GOD and tell her when....
As I told you...comfort your friend and stop trying to select her day od death.
Your honest friend whether you know it or not.
Leonard from Alamo California
I am caring more than you know.
by Solutions on Wed May 02, 2012 01:47 AM
Hey Bats1026...that was not a horrible response.
False hopes is a horrible response.
The only reason you wanted to know her death timeline is so you can cross off things on her bucket list. WOW...
Remenber your question and everyone responding to you should remember your question. You want to know when is your friend is going to die...another WOW
Tom gave you some good advise....so now what. Does that answer your question.
I will give honest answers....but do not ask me to play GOD for you.
If you lay out specifices about your friends issues I can and will help you. I have 7+ years living with Bile Duct Cancer...I know whats next if you tell me what is going on now.
Stay with your friend and comfort her...that's what she wants....she does not want you to tell her she has 6 weeks or so to live.
Thank you, Leonard from Alamo California
by bats1026 on Wed May 02, 2012 02:34 AM
I did not come to this site to upset you or to be berrated by you. I was just seeking guidance and you made me out to be a monster.
Since anyone can read your responses please stop your rants against me because new visitors to this site might be turned off by your negativity and lose out on an opportunity to obtain valuable information as Tom shared.
by curriewalla on Wed May 02, 2012 05:52 AM
I am not a medical professional. I know someone who has gallbladder cancer which, like bile duct cancer, is a cancer of the biliary tract.
The information that you have provided in your posts is not detailed enough for anyone - doctors included - to comment meaningfully about your friend’s situation. Even if you provided more details, it’s likely that most attempts at answering would involve alot of speculation.
If you surf the internet, you can find statistics about biliary tract cancers. However, if I understand correctly, statistics tell you about the group of people with cancer but don't map a personalized path for each individual in the group. Overall, the statistics for gallbladder cancer and bile duct cancer are grim. These cancers tend to be very aggressive.
My relative’s approach was to be informed, keep notes of all doctor’s appointments and get copies of all blood tests (e.g liver panel, tumour markers) and CT scan reports. I have become what you might call a research buddy. I self-educated, and can discuss things with my relative when he gets results. Both my relative and I made a deliberate choice to know the hard facts about his cancer. Not everyone wants to know.
If you are looking for additional sources of support and information in this difficult time, the cholangiocarcinoma foundation board is more active right now than this cancer compass board. Newcomers are welcomed warmly. The participants on the cholangiocarcinoma.org board are a combination of proactive, realistic and cautiously optimistic. They take the approach that no one has a time stamp. cholangiocarcinoma.org /punbb/index.php" target="_blank" rel="nofollow">http://www.cholangiocarcinoma.org /punbb/index.php
by curriewalla on Wed May 02, 2012 06:09 AM
It appears that I cannot edit, so I want to clarify this paragraph: "The information that you have provided in your posts is not detailed enough for anyone - doctors included - to comment meaningfully about your friend’s situation. Even if you provided more details, it’s likely that most attempts at answering would involve alot of speculation."
Clarification: With more information doctors could probably provide information about the stage of the cancer, including survival rates. Perhaps certain medical events (e.g. kidney failure) enable doctors to give a more accurate prognosis. But during much of the time during the journey with cancer, I think it is difficult to say with accuracy how long someone will live.
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