Re: Time for my experience and help

I knew from this site that the surgery is the only option of cure.

Re: Time for my experience and help

Hi to all;

First of all sorry for the delay. Today is one of those days when you feel something like what people call happiness.

In July my mother was the in first appointment with the surgeon after the surgery(october 2009) and six months of GEMZAR. That day she was told to take a blood test and a scanner for September. Today has been the day  to know the results and they are correct.The new scan, blood test and surgeon appointmente will be in January without any additional treatament.She said doctor that sometimes she has stomach discomfort answering that "this is normal after this huge surgery"
After one year of surgey my mum

Re: Time for my experience and help

Hi Carlos and that is all just the most wonderful news. Congratulations to your Mother. I really don't believe the Doctor would hide anything as that would mean he is not letting you seek treatment that would be crucial to Mom's condition. It is what it is and enjoy this time. When Teddy was in remission he saw the Oncologist every 3 months so that sounds right. Enjoy!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Carlos...Indeed this is a happy moment.  I am thrilled for you and your family.  Enjoy.
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Time for my experience and help

Carlos
That's excellent news and I'm delighted your mom is leading a normal life, without the need for additional treatment.

Gerry

Re: Time for my experience and help

Hi to all of you;

Today may mom had a new revision and she was told by the doctor that scanner was ok and the only thing was in the blood test.It seems that some transaminase levels are higth once again.
On the other hand  mum

Re: Time for my experience and help

Hello Carlos, good to see you again! Glad to hear Mom is doing well. Another surgery would depend where the CC occurs and if the Surgeon feels it will be successful. I would guess they would start with Chemo again, but then we are not doctors. Mom is doing good, she is a survivor and I would take this and bank it and try to live your gifted lives without too much worry. The doctors seem to be watching her fine and for her to be doing this well, they must be doing all the right things. Good luck and best wishes to you and your Mom.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Thanks Lainy for your answer and support.

Kind regards from Spain;
Carlos

Re: Time for my experience and help

Carlos,

Thanks for updating us, this is great news about the scan. I don't know a whole lot about the different scans but was it a PET scan or a CT scan? If it was a CT scan then maybe they could do a PET scan and see if something shows up there that explains the blood test? I agree with Lainy that your mother's good quality of life right now is a gift.

Re: Time for my experience and help

Hi Carlos,

It is good to hear from you again and also great to hear that your mum is doing well and feeling good, that is very good to hear. One thing I would say to you is to please try and not worry too much about what may or may not happen in the future. No ones knows for sure what the future holds for any of us so I would say to you to please try and enjoy the now and make the most of life right now. Your mums quality of life is good so enjoy this time together as a family.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Thank you Patty and Gavin.

Patty, your Spanish is really good :-)

Un saludo para todos;
Carlos

Re: Time for my experience and help

Hi to all of you;

Today may mom had a new revision(last one in January) and she was told by the doctor that CT scan was clear without any relevant information.
On the other hand  mum

Re: Time for my experience and help

Hi Carlos and thanks for sharing this great news with us.  Congratulations.  I would not worry about the extended time for the next scan.  Generally, when scans are clear the interval of time will be increased.  And, unless your Mom is displaying some symptoms there is no need for her to visit with her doctor.
Life is good. Enjoy.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Time for my experience and help

Hi Carlos, it is so good to see your smiling face again and even better to hear the great news about your Mother. It is an excellent sign that the doctor spaced the Scans further apart. That is the best news. Enjoy, enjoy and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Hi Carlos,

It is good to hear from you again and also great to hear the good news that your mum is doing well, thanks for sharing that with us all. I know that sometimes it is hard not to worry about everything, but try and just relax and enjoy the good news that your mum is doing well.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Marions, Lainy, Gavin and all of you thank you very much.


Regards from Basque Country;
Carlos

Re: Time for my experience and help

Hi to all of you;

Today may mom had a new revision(last one in May) and she was told by the doctor that CT scan was ok.On the other hand  mum

Re: Time for my experience and help

Kaixo!

Did she have to take a bile thinner after her resection? My mom had to take one after her resection and I assumed it was standard procedure.

There is a post on natural bile thinners if you want to try that:

http://www.cholangiocarcinoma.org/punbb … ?pid=32802

I did a search and some alternative/natural medicine websites have information on lemon juice and beets (remolacha? betabel?) as bile thinners, see:

http://www.processedfreeamerica.org/ind … ;Itemid=72

http://altmedangel.com/liver.htm

You would want to discuss this with her doctor before having her start trying these remedies.

Two years with clear scans and good quality of life is amazing, I think your mom is some kind of miracle, maybe there is something in the water in Euskal Herria, perhaps you can bottle it and ship it around the world!

Agur,

Patty

Re: Time for my experience and help

Patty, PCL1029, eskerrik asko erantzuteagatik("thanks for your answers" in Basque).

What I don

Re: Time for my experience and help

Carlos,

She may still have what is called "biliary sludge," see:

http://www.medicinenet.com/script/main/ … lekey=8573

http://www.annals.org/content/130/4_Part_1/301.full

I would ask the doctor why they think she needs to take it.

Patty

Re: Time for my experience and help

Hi Carlos and Hello to your Miracle Mom. While I don't know about thick bile, I just want to say that your Mom is truly a Miracle. 2 years is fantastic!!! I am not sure but perhaps gile itself does not show up on a CT Scan. Bravo that there is no Cancer!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Thanks to all of you.

Carlos

Re: Time for my experience and help

I appreciate reading about you and your Mom. Thanks Carlos. Give my regards to you mom. It must feel wonderful to have the news of clear scans.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: Time for my experience and help

Dear Carlos,
I read your whole story. Your Mom is an incredible fighter. You are the son every mother would love to have. You are so concerned and caring . Your Mom is very lucky to have you. I'm glad to hear your Mom is still doing well after all this time. I hope she continues to stay strong. Best wishes to you both.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Time for my experience and help

Hi Carlos....sorry for chiming in late.  Like the others I am very much pleased to hear that your Mom is doing well and like you, I am puzzled by the comment of the "thick" bile. We have had a few members on this site that also used bile thinners.  I remember our Rickkemp who had been given a prescription for URSO which is used to dissolve gallstones but, is used off-label also. 
Please, keep us posted.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER