Topic: Hello

Been lurking for a week reading so many mixed experiences of CC.  My sister was very suddenly diagnosed with a klatskins tumour 6 weeks ago.  She had portal vein embolisation done 4 weeks ago to try and grow the unaffected 14% of her liver so that surgery is viable.  Her ct scan to determine the liver growth was today and she is awaiting the results to see if surgery is happening on Monday.

Clare

In the stars now . . . .

Re: Hello

Dear Clare, welcome to our extraordinary family but sorry you had to find us. Wishing your Sister the best and sincerely hope she is able to have the surgery! I am glad you graduated from lurker to Member. Please keep us updated on your Sister's progress!

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: Hello

So sorry to hear about your sister. Where is your sister being treated? Did the portal vein embolization cut off blood supply to part of the liver so the "good" parts will grow to compensate? (Not super familiar, but heard of one other person going this route). 
My sister also has CC but its Intrahepatic. I'm sure you're as scared and upset as many of us are knowing the battle our loved ones are facing. Take Care, Willow

Willow

Re: Hello

She is in Scotland Willow.  Yes the embolisation is to grow the 'good' part.  To remove all the liver that needs to go would only leave behind 14% so embolisation to try and grow to 25% is her only chance of cure. Should know in next 48hours once the calculation is done if liver resection will go ahead on Monday.

Clare

In the stars now . . . .

Re: Hello

Do hope it's good news from this scan. It's nerve-wracking waiting for results. Best to you and your sister!

Willow

Re: Hello

Hi clarem,

I am glad you decided to join in. Welcome to our little family. I am hoping very much that your sister will be able to have surgery. Please keep us posted. We love hearing great news!! Take care.

-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: Hello

Clarem....this has worked before for others.  I wish the same for your sister.  Please keep us posted and thanks for joining in.
Hugs,
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: Hello

Thank you everyone.  The positivity and support on this forum is truly incredible.

Clare

In the stars now . . . .

Re: Hello

Clare
I too had an embolisation and my surgeon told me it was nearly always successful an I'm sure you sister will be fine.  My liver grew 25% in three weeks and I ate spinach, broccoli, red peppers and chocolate every day in abundance.  I wish your sister the best. X

.... because I can ....

Re: Hello

Hi Clare,

Welcome to the site. So sorry that you had to find us all and I am sorry to hear about your sister also. But I am glad that you have delurked and joined us all here as I know that you will get a ton of support and help from everyone here.

I too am from Scotland, Dundee, born, bred and still live here! And I came here back in 2008 after my dad was diagnosed with his CC. He was diagnosed and treated at Ninewells here in Dundee. Can I ask where your sister was diagnosed and had her portal vein embolisation done as well? The reason that I ask is that this information may be of interest and use to others from Scotland who may come here in the future. I assume that if your sister does have her resection then it will be done at the same hospital?

Sorry for the questions!! My fingers are crossed for good news for your sister and I so hope that she will be able to have her resection on Monday. Please let us know if she can. I know that your head will probably still be spinning with everything about all of this, I know mine was when I was in your shoes. But please know that we are all here for you. We so know what you are going through right now and we care.

My best wishes to you and your sister,

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: Hello

Hi Gavin, she had the embolisation in raigmore hospital in Inverness and will get her surgery there although her home is a 2.5 hour drive from Inverness.  I have met her surgeon and have complete faith in him - we both do.  Every wall he has come up against he's found a way round it for her.  I also know though that he will not put her through surgery unnecessarily.

I did my nurse training in ninewells many years ago now - have good memories of my student nurse years there:-)

Clare

In the stars now . . . .

Re: Hello

Hi Clare,

Thanks for letting me know about your sister and Raigmore. I hope you didn't mind me asking but that info could be of use to someone else in the future who comes here. I am very happy indeed to hear you say that both you and your sister have complete faith in her surgeon and from what you have said, it does sound like he is indeed fighting in her corner. Good stuff and I hope all will go as planned.

Thats great that you did your nurses training at Ninewells and have such great memories of your student years there! My little cousin is training as a nurse at Dundee Uni and part of her placements have been at Ninewells amongst other facilities. And Ninewells itself just seems to keep expanding in size! They say that if you ran through every corridor there then you would have run the equivalent of a marathon! Considering how much time I have spent walking the corridors there, it feels like I have done that marathon!!!

Please let us know how things go for your sister and if we can help in any way then all you have to do is ask and we'll do our best to help.

My best to you both,

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: Hello

We've just heard from the surgeon and my sisters liver remnant has only grown to 24%.  We also know now that the tumour is round a major artery.  It was always going to be a big ask getting the 14% to 25%.  There are no guarantees with this but she is young, no past medical history and in the last 8 weeks has not been as ill as her doctor would have expected someone in her position to nomally be so he is prepared to operate on Monday. 

I am terrified for her but at least she has chance of beating this.

Clare

In the stars now . . . .

Re: Hello

Clare I am sending a ton of prayers and good wishes for your Sister. Hoping for the best and the best you can do is to stay very strong!

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: Hello

I'm there now Lainy!   The initial relief that they would operate was superseeded by complete terror but I'm fine now and will take Monday an hour at a time.  Her husband, my parents, niece and nephew  are the priority on Monday and together we will get each other through.  Just when you think you can't dig any deeper, somehow you do.

Clare

In the stars now . . . .

Re: Hello

Clare, I love your attitude and you are right it will get you through and your attitude is also extremely helpful for your Sister and family.I know you will let us know how everything goes as soon as you get a breather on Monday.

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: Hello

That's wonderful that your sis is having her resection Monday! She sounds strong and I expect she will come through just fine. Still, understandable that you have anxiety about this, you're only human. This is the best news, that she became resectable!  I will be keeping you and your sister in my thoughts.
Willow

Willow

Re: Hello

Clarem.....fantastic news.  Know that a tidal wave of support and love is heading your way.
Hugs,
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: Hello

Clarem: love love this news! My fingers toes and everything else will be crossed and prayers sent for a successful resection on Monday.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Hello

Hi Clare,

This is great news that your sisters surgery is going ahead on Monday, and my fingers are crossed for her and a ton of positive thoughts is coming her way as well from me. Yes I can understand your feeling terrified, but please stay strong and positive as well. Let us know how things go for her and remember that we are all here for you.

Best wishes to you both,

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: Hello

Thank you everyone.  I am truly touched by the abundance of support, understanding and well wishes.  I will let you know how Monday goes and as my Dad said this evening, she has nothing to lose and everything to gain.

Clare

In the stars now . . . .

Re: Hello

Clare, welcome to this wonderful family of support and love. I am so pleased to hear that they are moving head with the liver resection. I have had two resections and recovered just fine. It is a big surgery but you will be amazed at how each day she will get stronger and stronger.
Sending prayers
Lisa

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: Hello

Dear Clare,

That is great news about your sister's resection, but I'm sure it is also very scary. I am sending positive thoughts to your sister for a wonderful outcome. Please keep us updated and best wishes to all.

Love, -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: Hello

I'm sorry I didn't post yesterday after all the support you offered.  The call I didn't ever want came 3hours into what should have been a 8-10 hour operation.  The tumour was too advanced to remove and the surgeon made the difficult decision to halt the operation.  It is not what we wanted for her but is the right decision so we will move on to the next challenge of chemo and give her the best of life for as long as we can.

Clare

In the stars now . . . .

25 (edited by PCL1029 Tue, 18 Dec 2012 13:33:03)

Re: Hello

Hi,
Below are the links for chemotherapy in general.

http://www.cholangiocarcinoma.org/punbb … hp?id=7843

the one below is opinions about adjuvant chemotherapy pros and cons.

http://www.cholangiocarcinoma.org/punbb … hp?id=9333

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.