Introduction / Welcome

Hi all,

I’m not sure if I’m posting this in the correct place (intro), hoping someone will be able to read it.

I’m the daughter of a cholangiocarcinoma patient.  My 71 year old father was  diagnosed with this disease in June 2018.  Came on like a storm out of nowhere. Some abdominal pain, misdiagnosed as gastrointestinal issues, totally missed it on the ultrasound.  Then severe jaundice came on, so obviously dad ended up in the hospital, underwent series of tests to receive the final diagnosis.  Had succesful stent placement.  Started feeling better.  Doctors, surgeons and oncologists gave us a very poor prognosis, stage 4, inoperable, metastatic, some in the lymph nodes, some in artery and wall behind organs.   Dad knows some of this information because he’s currently residing in Greece, where doctors will give minimum information to the patient in order to avoid a complete psychological meltdown where one can just pass away from hopelessness and sadness.  Us, the family are fully aware.  Dad has been given a time period of maximum one year.  He has started chemo, has had 4 sessions that have completely wiped him out.  For one he’s unrecognizable, my 6’2″ 195 pound dad is now a very fragile, frail man.  Lots of weight loss and exhaustion.  He sleeps all the time, refuses food, claims no appetite and pain if he eats anything solid.  So, it’s power drinks, yogurt, some cream and juices he linli.  Has lost interest or cannot participate in any activity, even watching his favorite shows, reading or playing on his Kindle, which he did following the first chemo session.  His latest blood work showed signs of somewhat of an improvement.  Oncologist told us all, including dad, that yes this is good news but due to the nature of the disease we don’t know whether these good news will reappear in the next exam.  Dad is scheduled for an MRI on October 3 following his 5th chemo session.  I’m just amazed at the complete collapse the treatment has caused.  I was under the impression we’re doing this to give him a better quality of life and perhaps a chance of tumor shrinkage and possible surgery, I’m being very optimistic, it’s my father though so I can only hope.  I currently reside in MD, in the US and am frantically looking into any clinical trials he may be a suitable candidate for.

Thank you for reading.  I would appreciate any words of encouragement!   I’m so glad to have been able to read many of your stories.  They are comforting and inspirational.

Thank you!

Betti

Hello. My wife aged 56, was diagnosed with CC four months ago. She initially presented with severe itching followed by a slight jaundice. Her regular doctor diagnosed her condition as menopause related and began treatment. The condition of course did not improve but her doctor continued to try to relieve her symptoms. Fortunately she was absent on one occasion and so my wife saw her colleague and he  saw things very differently. Within a short time she had blood tests, an ultrasound, CT Scan and MRI which confirmed a much more serious diagnosis. To say that we were stunned was an understatement. In a moment we went from planning a European vacation to planning her treatment. On reflection we are horrified to think of how long her regular doctor would have continued to prescribe lotions and diet as a cure.

We had recently returned to Australia after an extended stay in New York so we had to make a decision as to where to have treatment. We considered MDA in Houston based on their reputation and advertising, but decided eventually to stay in Australia where there is more family support and where costs are so much lower. The first specialist that we saw was far too relaxed about treatment and basically uncontactable so apart from placing stents he did little to help. By this stage I was starting to look at flights to Houston but with time passing we sought recommendations from friends and family about treatment options in Sydney. As a result we contacted Dr. David Yeo at the Chris O’Brien Lifehouse in Sydney and from there the situation improved dramatically. Five days after seeing him, my wife had a Whipples procedure and the tumor was removed with thankfully, clear margins.

She has now moved on to adjunct therapy with Capecitabine oral chemotherapy for six months. So far, she is now in cycle three, she is tolerating the drug well even with high dose. Her oncologist has also approved a three week break in treatment after cycle five so that we can spend a few weeks relaxing in Hawaii, visiting Disneyland and seeing relatives in Las Vegas.

So far we are doing as well as can be expected in these circumstances and are hopeful of a positive outcome. These are truly the times when the effort and commitment that you put into your relationship over the years is there to sustain you so that you face challenges together.

We are none the less realistic about the challenges ahead and once this course of treatment is complete we will likely be back in the US to participate in clinical trials. Developments in immunotherapy look particularly promising. We can but hope. Best wishes to you all. Roger and Tracey

Hi Judy,

Welcome to our community.   I am so sorry to hear about Joe’s diagnosis – cholangiocarcinoma sadly can be symptomless at the beginning, and patients can be blindsided when it is discovered.

I hope you and Joe have been able to look through the patient and caregiver resources on the Cholangiocarcinoma Foundation’s website.

It sounds like your husband is in good hands with Sloan Kettering, with a trial in hand and a back-up for when you need it.  The treatments through clinical trials can produce good results for many patients (shrinkage or stable disease) for a period of time, then may lose effectiveness, and a new treatment may then take over.  I hope Joe gets good results from the AG-270 trial.  Please keep us posted on his progress.

AG-270 is a newer trial.  The INCB054828 trial has been around for awhile.  There is a patient blog that describes experience with this trial – the link is  http://pattysjourneyoffaith.blogspot.com  and the posts on the trial start with December 2016.

Please keep the faith.  Sending prayers your way that the trial does good work in keeping Joe feeling well.

Regards, Mary

Hi Pamela,

Thank you loads for your most generous donations from your store. It is much appreciated indeed! I know how proud your mum will be of you and like you as well I too hope that we will find the cure as soon as possible. Thank you!

Hugs,

Gavin

Lauren,

Thank you for your post.  Your father is having a tough time, I hope he is feeling better and can come home quickly.

This discussion board is a welcoming community and although we are not doctors, together we have a huge body of experiences when it comes to this very rare cancer.  Please take a look at the Foundation website resources for newly diagnosed patients, and with the search engine you can find other caregiver and patient experiences with the treatments and symptoms your father faces.

Which chemos will your father be treated with?

Please stay in touch!  Regards, Mary

Hello Mary,

His first treatment of Chemo went alright, He came to my work after and was in good spirits and actually was acting like his old self. I do not know what meds they are using. He goes to see his Dr. next Wednesday and I told him I am going to tag along to ask some questions. We want to get a second opinion, but everyone I have talked to says start the Chemo first to get the cancer from spreading. According to this Dr; Cleveland Clinic read his reports and looked at his scans and said there was no hope and he was not a candidate for surgery. I have this feeling in my gut, that this Oncologist doesn’t know what he is doing. Now mind you this could be a daughter trying to save her dad, or my gut could be right. I live in Canton Ohio and I do not think that the Dr.s here have any idea what to do with this kind of cancer. I have contacted Cancer Treatment Centers of America and they say that they treat this cancer, but in my research I have found that they are not good places to go but I don’t know. My dad fears if he doesn’t listen to this Dr. then he could die now. In all that I have read the outlook is bleak, but I do let him see it. I give him honest and upfront answers on the research I have done. I will not give him false hope, but will not let him wither away either. He lives an hour away. But I call him and make sure that he is moving around. He is so tired all the time. My fear is he will give up. Even though, he said he can’t go yet, he has to make sure everything is in order. He does not want to die so I think that positive is helpful. I will keep you posted.

Hello, My name is Sherry. My father was diagnosed 1 week following his 70th birthday (Feb 3rd 2018). He went in for a gallbladder issue, came out with the horrific news that he is dying. In my research on this ugly monster I came across this site. I have been doing what I can to get all of the information as he is not getting all of the information from this particular Dr. He started Chemo last thurs. After his treatments are completed I will take him for a second opinion as to the depth of this cancer and its ability to be removed. Thank you for allowing me to join this group though I wish there was not a need for it.

Hi Rhondarn,

Thanks for responding. I have been doing more research and it alternatively scares and calms me. How is your mother? Was her IHCC found early? The survival rates are very scary. But I need to focus on the positives and be optimistic. I am very nervous about taking Xeloda. Did your mother take that?

KasotaK