October 17, 2018 at 9:27 am #97655MaryPParticipant
My name is Johny from India. My mom was diagnosed with IHCC last month during a routine scan. No visible symptoms. Came as a big shock to family, given she was reasonably healthy for her age (mid 70s). Stage IV with some spread to lungs and L4/L5. Tumor on liver seems non-resectable. Oncologist has started her on chemo to reduce the tumor on her liver (Gem and now Gem+Oxi) to improve quality of life.
Came across this CCA Foundation via google search and find it very informational. Thanks!
JohnySeptember 17, 2018 at 6:37 am #97515lilitmParticipant
Hi Betti, I’m so sorry about what your dad is going through, and you with him. I am also on this board for my dad, who was diagnosed in March 2017, also stage 4 from the start.
I appreciate the Greek way of not devastating the patient – the first oncologist my dad saw in the US was so negative and bleak… I would not listen to their time periods, because they truly don’t know how anyone will respond and the median time of a year means that people also outlive that amount. My dad is here 18 months post diagnosis, still fighting. If you saw him on the street, you would not guess what he is going through.
I hear you completely on how hard it is to see him unrecognizably frail. I’m guessing this is his reaction to the chemo. Is there any chance they can lower the doses? They did this for my dad when he was on Gem/Cis, and he stayed on it for 11 months with stability/slight shrinkage before a scan showed progression and he had to switch to Folfiri.
He was on Folfiri for about 3 months but it didn’t work and then he needed a biliary stent. At the end of June 2018, he began a clinical trial at the NIH in Bethesda, Maryland – using immunotherapy (2 checkpoint inhibitors: durvalumab and tremelimumab) and ablation, in the hopes that the ablation will release neoantigens that can be recognized by the primed immune system. The first scan in Aug was stable and we are hoping for even better in the October scan.
The most important thing I would say is to ask them to please send him tumor tissue for genomic testing ASAP (like at Foundation One). If he has targetable mutations or immunotherapy indicators (ask to test for PD-1/PD-L1, MSI, TMB, DNA MMR…) – then maybe he will respond to targeted treatment or an immunotherapy trial.
Unless he is having a major shrinkage response to the chemo, I would question whether it is the right choice for him since when surgery is not the goal, then the goal of chemo here is supposed to be extending his quality of life time – “more good days”, an oncologist told me. But if the side effects of the chemo are taking all the quality of life, then I would reassess the balance… perhaps look into metronomic/low-dose chemo?
Can he also get a CT and not just an MRI? (They always do CT at the major institutions here in the US.) Did they say there is a chance for surgery after chemo? I think you need clear answers on this to better assess the goals of the chemo.
There is absolutely hope – I also read the book Radical Remission and try to apply the 9 factors to my dad in some way. Sending you my hopes and all my compassion and loveSeptember 13, 2018 at 6:42 pm #97493
It is nice to meet you, but I am sorry to hear about the ordeal your father has faced with his diagnosis. It must be hard for you to be watching out for him from a distance.
A cancer diagnosis is usually a shock, and as your father is experiencing, can be disruptive to many aspects of daily life. Feelings of helplessness and depression are not uncommon, and sometimes these symptoms can be difficult to separate from symptoms of the cancer and side effects of the treatments. From what you describe, my impression is that you feel the treatment may be stabilizing his cancer, but your father is not feeling well and is losing interest in eating and in daily activities. Is your father experiencing pain? Are his doctors attentive to addressing any side effects he is experiencing which may be affecting his sense of well-being?
It is good you are looking into clinical trials. The clinical trials.gov website does include listings of trials outside the U.S. Also please be aware that some patients may eventually reach a point where they choose to end treatments that fight the cancer in favor of assistance that emphasizes quality of life and alleviates symptoms. This is a very personal decision for a patient. It may be a worthwhile investment of time to also research what care options would be available for your father similar to hospice in the U.S. so you are prepared with this information in case someday your father decides he no longer wishes to pursue treatment. With a rare cancer, the burden of researching treatment options does tend to fall to patients and their caregivers.
Hopefully the chemo is doing its job, the next scan will confirm this, and your father begins to feel more positive. As you mention, it is important that he maintains good nutrition.
There are no easy answers when a loved one is fighting a serious illness. You can find a wealth of information and resources for caregivers on the Cholangiocarcinoma Foundation website. Finally, it is important to be sure that your father’s medical providers have experience with this rare cancer.
There is a great community here for you. Please stay in touch, send any questions or concerns our way, and let us know how your father is doing.
Take care, regards, MarySeptember 13, 2018 at 9:40 am #firstname.lastname@example.orgParticipant
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.
BettiAugust 27, 2018 at 9:04 pm #97429
Hi Roger and Tracey,
Welcome to our community. It is truly concerning how difficult it was for Tracey to get to a diagnosis – especially since, as you note, time is of the essence with a cancer diagnosis. But, given the circumstances there was a hopeful ending as she was able to have surgery followed by adjuvant treatment. It is great Tracey is tolerating the capecitabine well. Should that change, if you search the chemo name on our search engine, you will find a lot of practical advice on how to cope with side effects.
If you haven’t already done so, you might try searching “Australia” on the discussion board search engine. There have been members over the years from Australia, and there might be info on doctors and treatment centers. I know a few of the trials available in the U.S. have sites in Australia. You are probably aware of the following already, but to get this information out there for everyone: Clinicaltrials.gov while a U.S. website does provide worldwide clinical trial information, and there is a similar site for Australia which is australianclinicaltrials.gov.au.
Your upcoming vacation sounds great. I hope you and Tracey enjoy your time getting away, it will be especially pleasant given the recent ordeal you both have been through. Please take a look at the patient and caregiver resources on the Cholangiocarcinoma Foundation website, and stay in touch.
P.S. Since you enjoy travel to the U.S., I encourage you (and all our community) to consider joining the Foundation’s annual conference, which will take place in late January in Salt Lake City. Information is posted on the Foundation website.August 27, 2018 at 3:04 pm #97428Roger56Participant
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 TraceyAugust 15, 2018 at 10:08 am #97375Carrot2018Participant
This is carrot,the caregiver to my dearest husband who got diagnosed with ICC. He had tumor taken out with clean margin, but lymph node is positive. He is doing GEM&Cap chemotherapy as adjuvant treatment now and tolerated it well. We have been treated at MD Anderson. The medical oncologist is Dr Varadhachary. We feel devastating when got to know the diagnosis but also feel fortunate to know the foundation here. There is Her2 amplifier found in the tumor and dr recommends adding Herceptin(targets Her2 positive breast and stomach cancer)to the adjuvant therapy. This is not done before and no scientific proof. I was asking if anyone had similar experience before?
ThanksJuly 12, 2018 at 4:27 pm #97253
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, MaryJuly 12, 2018 at 1:06 pm #97252FlycatmooseParticipant
Hello, I’m new to the Discussion Board. My name is Judy and my husband’s name is Joe. In February my Joe started complaining of a stomach ache. Being a big guy at 6′ and 210 pounds and very healthy, we didn’t think much of it…he never missed a colonoscopy or a physical at the doctors. The doctor thought it was just an ulcer and asked to do a ultrasound so that he could treat the ulcer. That ultrasound led to a Cat Scan with contrast that same day and by the next day, our whole world turned upside down…..by that night, we were sitting in an Oncologist’s Office going over my husband’s scans. Little did we know at that time how rare and aggressive this cancer was…actually we knew nothing about cancer…..After many tests for 3 weeks straight, it was determined he had Intrahepatic cholangiocarcinoma, It was stage 4 and had already spread to his spine and his periodium. He went through two months of chemo (gemzar and cisplatin) which did nothing to slow his cancer down, infact his tumors grew bigger. He then started on Folfox but got really sick and ended up in the hospital twice for paracentesis and high heart rates and low blood pressure. At this point, they asked us to contact Sloan Kettering to see if they had any Clinical Trials going on. We had gone to Sloan Kettering in the beginning to get a second opinion and they did Genetic Testing to my husband. They found he had 2 Genetic Mutations. He was recently enrolled in a Phase I Clinical Trial of AG-270 which is a treatment for advanced solid tumors with the Homozygous Deletion of MTAP. He fit the criteria and this is his first week on the Trial. He was also tested and fit another Clinical Trial which was a Phase 2 Trial to Evaluate the Safety of INCB054828 in Subjects with Advanced Cholangiocarcinoma including FGFR2 Translocations. He was 99% ready to start this trial when the Drug Company ordered samples of his Liver to do their own biopsys. The doctor did not want to wait and said to go into the Phase 1 Study immediately. We are hoping that this trial shows some progress but it is too early to tell. If it does not, we are hoping to get into the second trial. Right now we are hoping for the best and trying to stay positive. This Cancer is aggressive and unpredictable. My husband had to stay off of Chemo and Radiation for a month to be able to go onto this trial but in the time he was off, his cancer grew to an advanced state. We are hoping that this medicine stabilizes the cancer. We are praying…..July 4, 2018 at 11:21 am #97224gavinModerator
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!
GavinJuly 1, 2018 at 3:07 pm #97213pgaskaParticipant
Hi. I wanted to let everyone know I am donating part of my sales to the Cholangiocarcinoma Foundation. I will be donationg 10% of each sale in my Etsy shop! My shop name is Fired and Wired. I make hand-stamped jewelry.
I haven’t been on this site in quite awhile. I lost my best friend and mother, 8 years ago this September, to this cancer. I wanted to do something in her memory. I pray that one day there will be a cure. Prayers to all on this site!
March 2, 2018 at 1:10 pm #96690
- This reply was modified 1 year, 2 months ago by pgaska.
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, MaryFebruary 28, 2018 at 11:31 am #96685Lauren928Participant
<p style=”text-align: left;”>Hi, I am a caregiver to my 71 year old father who was diagnosed with intrahepatic cholangiocarcinoma with Mets to the lungs on February 7th. On February 18 he was admitted to the hospital with pneumonia, a pneumothorax in his left lung, and a pulmonary embolism in his right. He had a pleurodesis procedure as well as paracentis. He is recovering and we are hoping to have him out of the hospital this week to start chemo next week. This is a tough road. I’m glad I found this site for support.</p>February 28, 2018 at 6:52 am #96681SherrybParticipant
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.February 27, 2018 at 9:19 pm #96680
Welcome to the discussion board, but I am so very sorry to hear about your father.
Yes this is a difficult cancer, but it is treatable and many patients exceed the doctor’s initial prognosis with decent quality of life. Please help your father and family to stay positive and hopeful. What is essential for cholangiocarcinoma, because it is so rare, is to find experienced doctors, which usually means seeking advice from a major cancer hospital. Have you been able to find doctors who know this rare cancer?
If the cancer has not spread, it is also important to seek a good surgical opinion up front. The surgery for cholangiocarcinoma is very complex, and doctors with less experience with this cancer may say “inoperable” when a skilled liver surgeon would say otherwise.
There is a ton of great information on the Foundation website for the newly diagnosed, plus a community of patients and caregivers.
I hope your father tolerates the chemo without too many side effects. What chemo drugs has his doctor recommended?
Please let us know how your father is doing once he starts chemo. There are a lot of great posts in the chemotherapy section of the discussion board that offer advice on calming down any side effects.
Take care, regards, Mary
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