Topic: Hopeful!!!

Hi
We are from Australia. My name is Melissa. My husband has recently been diagnosed with Cholangiocarcinoma following a transplant.
We have been through 3 different hospital to find a diagnosis.
On arrival at the 3rd hospital, they were convinced it was PSC (Primary Sclerosing Cholangitis). Due to this diagnosis, they placed him on the liver transplant list, which he has just recieved.
It has been 3 weeks since the transplant, the doctors have biopsies his old liver to find Cholangiocarcinoma. They say it had spread to the surrounding lymph nodes attached to the liver. It is also down the main duct and the lower parts. They do not know if it has spread to other organs. They have also staged him at Stage 4??? This is based on what they found in his old liver.

My worry is that now he has had the transplant (the major part of the cancer has been removed) he is on immuno-suppressants. Will this speed up the growth of the left over cancer?? He can not receive any type of chemo for 3 months until the transplant has settled.

Re: Hopeful!!!

Hello Melissa and CONGRATULATIONS on your husband's surgery as surgery is our favorite word. I cannot help on this part but I do know members will be coming on to share with you. I wish your husband a good recovery and please keep us posted on his recovery and progress. I know he went through a lot but he is lucky to heave been able to have the surgery. Wishing you both the very best and hang in here as other will be along to help.

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: Hopeful!!!

Hi Melissa. I, too, would like to welcome you here. There are many members to offer support, knowledge and experience.
First off, congratulations to your husband on getting a transplant! That is great news!! Unfortunately I can't help you about the surgery, but I do know that taking the immunosuppressants can make dealing with cc difficult.
Please let us know how things go. Hopefully the 3 month wait won't make too much of a difference. And as Lainy said, I'm sure someone will chime in here that has a bit more knowledge about your situation.

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: Hopeful!!!

Hi Melissa,

Don't have the answers you need, but would also like to welcome you aboard.  We are a friendly, supportive group.    There are several from Australia who post here, so you may be hearing from some of them soon.   My friend Janet lives in Austinmer and is a nurse.   She checks in now and then.   She may have some answers for you.  If it is OK with you I can try to contact her and ask her to get in touch with you.  Let me know if you would like to have me do that.

Glad the surgery went well and hope things continue to work out for your husband.

Take care.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hopeful!!!

Hi Melissa
Welcome to our unique family and I'm sorry you've had to join us. You have come to the right place for tons of support and a wealth of information. I will keep your husband in my prayers that is transplant will lead to a healthy healing. Although, I have no input to share trust me help is on the way. This is an awesome group that will share as much knowledge with you as they possibly can. You have come to the right place for not just knowledge, but venting purposes also. God Bless

Michelle

6 (edited by Daisy Fri, 03 Jan 2014 20:50:54)

Re: Hopeful!!!

Hi Melissa,

My mom had a resection in August. She has intrahepatic CC so she was not a candidate for a transplant. If she had Hilar CC like "Jathy" you can read her posts...she had a transplant more than 4 years ago.  From my understanding they say that once you have a transplant you can not receive chemo?? Your post says your husband needs to wait 3 months?? This is ONLY my opinion I am NOT a doctor but I do think that getting the transplant is not a negative!! CC is not always receptive to chemo so getting rid of the tumor seems like a good start!!

Re: Hopeful!!!

Dear Melissa,
What a crazy ride you and your husband have been on. Wish the CC was easier to diagnose. PSC is a risk factor for CC as you know. Yes, Cathy (Jathy is screen name) had a coue transplants and is doing well. She would be a good person to talk to. Its true that if some cancer cells are still in the body, recurrence of the CC can occur. My sisters surgery consult dr said growth factors stimulated (or turned on) by liver surgery can stimulate cancer cells too. Its good for repairing g liver but bad for suppressing cancer cells. This is kind of the opposite of chemo in that it suppresses cancer hopefully but suppresses healthy rapidly regenerating cells. So, the delay to allow healing before chemo makes sense to me but I'm no expert. Also, Multiple opinions from doctors who are well versed in this rare cancer is highly recommended. Sometimes you can just send the records instead of physically flying to another state to meet with the Dr for an initial opinion. Focus on one day at a time and try not to stress about the unknowns.
Sincerely, Willow

Willow

Re: Hopeful!!!

Hi, Melissa,

I remembered about one and half years ago, a young men in the early 20's had liver transplant (again PSC was the risk factor) at Mayo Clinic. He communicated with me for quite a while via e mail. He told me the explant (the liver that surgeon taken away from his body.) later  was discovered  cancer cell in it even he went thru the neoadjuvant chemotherapy before the surgery.
the link below was his story.

http://www.cholangiocarcinoma.org/punbb … 757#p62757

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.

Re: Hopeful!!!

Thank you everyone for your positive comments and prayers. The doctors are telling us that they believe to have removed 99% of the tumour. The challenge is to find the remaining 1%.
We are very grateful for the gift of a new organ, it has truly made a huge difference. My husband has been given a new lease on life.
Darla, I would really appreciate it if you could ask your friend Janet, Thank you!

Thank you. Your kindness is heartfelt smile

Melissa

10 (edited by Lainy Mon, 13 Jan 2014 07:43:08)

Re: Hopeful!!!

Dear Melissa. I keep saying how I love to wake up to good news and it doesn't get much better than this! Wonderful! Now they need to send out the detectives to locate that measly other 1%. I wish for a speedy and non eventful recovery. YIPPEE!

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: Hopeful!!!

Hi Melissa,
                 I think your husband's situation is complicated and pretty unusual,Percy mentions one other similar case but I am not sure how that worked out.
  Some people,I think just saw the word transplant and assumed he had it for the cancer and of course that is quite different.
  The transplant history changes the treatment options a bit but they can juggle a bit with the immunosuppressants,reduce or change them when giving chemo,other than that I think it will be a wait and see type of thing and hopefully it had not spread much further than the nodes.
  How strange that the cc wasn't picked up before they operated but it is a weird cancer in that way.
  As we always say here ,just be optimistic but realistic
                                                                            Kindest regards      Janet