Tagged: Our story ...
August 13, 2019 at 10:40 am #98967GetwellsoonParticipant
My 32 years old sister got diagnosed with bile duct cancer, psc, and recently seen a lesion (bad tumor) in her liver that they could not see on ctscan or either MRI. They have seen it when they were changing her stents since her bilirubin is always very high that they can not start chemotherapy. She needs a liver transplant. But since they have seen a lesion in the liver they put her on hold. Thankfully they have burnt the 2cm bile duct cancer that has not been spread. She started having itchy hand and feet right on her due date. She was pregnant. And after few days of her delivery she turned yellow. And then they found out she has psc , and bile duct cancer. Anyway, but we have seen so many miracles on the way. Thank god for the new technology and awesome doctors. She is in UCLA hospital. I am glad that I have found this website to share put experiences and also read your experiences. Now we are just waiting on their decision for the liver tumor. I am sure everything will be fine soon. It just takes a long time. It is a long journey but fixable.May 3, 2019 at 2:42 pm #98526
Welcome to our group and please do send any questions our way. There are a lot of patient and caregiver resources available on the Cholangiocarcinoma Foundation website as well.
Keytruda is a complicated topic for our cancer. A few patients have had incredibly good results – they tend to be persons with the mismatch repair deficiency (dMMR) or microsatellite instability-high (MSI-H) – related genomic defects. These genomic defects are relatively uncommon for our cancer but a few patients are found to have them, and some (not all) of this small group have a good response. Other patients without a genomic indication for Keytruda have also occasionally been treated. My understanding is that such patients tend to have much less success with Keytruda but it has helped a few. For that reason, my impression is some doctors are apparently willing to try Keytruda with certain patients lacking the genomic indication if their treatment options are otherwise limited.
If you search “Keytruda” on this discussion board, you will find some of the patient stories. There is a Facebook group related to immunotherapy for cholangiocarcinoma which can also be searched out.
Best wishes that your husband’s treatment goes well. Please stay in touch.
Regards, MaryMay 3, 2019 at 2:25 pm #98525
Thank you for posting your story and congratulations on completing treatment. I remember how good that felt especially after getting through the weeks of radiation.
I hope your doctor has worked out a solid surveillance plan to keep an eye out for the cancer possibly making a reappearance. Hopefully it won’t! The most typical approach among our patients who have posted on the discussion board is quarterly chest-abdomen-pelvis scans during the first two years, as well as blood tests including tumor marker(s). Years 2-5 this typically drops to two scans per year then an annual scan after five years.
Please stay in touch and let us know how you are doing.
Take care, regards, MaryMay 1, 2019 at 1:48 pm #98520CorgigalParticipant
I am a 65 year old woman, diagnosed with distal bile duct cancer in Sept 2018. I had a successful Whipple procedure at Stanford in Oct 2018, followed by 5 months of gem/xeloda chemo, and another month of radiation/xeloda. I finished my treatment earlier today!!
I was fortunate to be diagnosed fairly early, as I recognized the skin itching and pale stool symptoms and saw my primary doctor immediately, since my mother got cholangiocarcinoma at age 89. I thought I was being overly dramatic to worry about such a rare disease striking me too, but am very glad I had my symptoms checked out right away. My mom was unfortunately diagnosed much later in her process, and passed away very quickly after her diagnosis.
I’ve definitely had a few side effects from treatment– mostly a bit of nausea, hand/foot syndrome from the xeloda, and other skin issues. Overall, everything has been very manageable, though not always fun. I encourage anyone to consider treatment if it is possible, and to make sure you don’t ignore symptoms, but check things out.
Fingers crossed that my treatment took care of any lingering cells and that I’m back to normal. I’m glad to have found this group to continue my education on this disease.
I’m happy to share my experiences if it is helpful.May 1, 2019 at 10:24 am #98519CmkornParticipant
I am new to the group and thankful to read about the successes and treatment options. My husband is being treated for bile duct cancer but with no mention of using ketruda. It seems all the questions I ask lead to more confusion. His cancer is in the liver and the T 12 vertebrae ……Please share anything similar …..We are in Pittsburgh and have good doctors …….February 25, 2019 at 1:04 pm #98218Constructioncm619Participant
Thank you, Mary!
Yes, we did do tumor profiling by Caris Life Sciences out of Arizona but I was already taking the Keytruda. The molecular testing was done as an option in the event the Keytruda and Gemzar/Cisplatan did not work and I needed to find another clinical trial for treatment. At least that was my understanding of it.
Have a terrific week,
ChrisFebruary 23, 2019 at 7:10 pm #98207
What a story – to have battled your way through two tough cancers, and with such a hopeful ending.
Did you have genomic testing that suggested Keytruda would be effective in your case? We have had a couple other Keytruda success stories posted on the board – one was a patient who had tested positive for the MSI high genomic defect.
I hope the continued Keytruda infusions wipe out any cancer cells that might still be around. Please keep us posted.
Regards, MaryFebruary 23, 2019 at 10:56 am #98193Constructioncm619Participant
Hello and I wanted to introduce myself and share my CC story.
My name is Chris Shepard. I went through 2 years and three months of immuno-therapy treatments (Yervoy and Keytruda) starting in 2014 for Stage IV Melanoma. I had a tumor in my leg and the melanoma spread through my lymphatic system to my lungs and liver. Thankfully, I responded well to the treatments and am currently in remission or NED.
In April of 2018, I had a maintenance scan done that showed a “shadow” on my liver. It was not present 6 months prior at my previous scan. It turned out to be an aggressive CC tumor. I had no side effects and was feeling really good as I was training for a 100 mile bike ride up at Lake Tahoe. My oncologist, Dr. Steven O’Day at the Saint John’s John Wayne Cancer Institute in Santa Monica, started me on Gemzar and Cisplatan Chemo infusions which are a treatment standard for CC. He also found a couple clinical trials that showed initial success treating CC with immuno-therapy. He reached out to Merck and made the justification case for me to treated with Keytruda while I was doing the chemo through a special Merck Access Program. I was basically a one person clinical trial.
October of 2018, my scans showed the tumor had stopped growing and the CA 19 9 Enzyme was down to much lower levels. Actually, the tumor shrunk significantly and oncologist and surgical oncologist decided to remove what is left via surgery. They did not know what caused the reduction in the tumor. Was it the chemo, was it the Keyruda or a combination of both. In surgery, they removed my gallbladder, about 30% of my liver, and removed lymph nodes in the area that they believed were impacted by CC. The surgery was deemed a success and they were able to remove 99.5% of the CC. My lymph nodes were impacted and I was considered Stage IIIB.
They dissected the tumor and sent it to a lab for analysis to determine what caused the reduction in size. The tumor was dead and it was encased in lymphocytes (white blood cells). This showed the Keytruda was successful in energizing the T-Cells to recognize the CC tumor and attack it. My oncologist (and my family) was very happy with the results and I continue to get Keytruda infusions every three weeks to address the minute .5% of CC left in my body.
I cannot tell you how fortunate my family and I feel to be in remission of two very serious cancer diagnoses in the last 5 years. I wanted to share my experience / story to hopefully inspire and help others that are dealing with this horrible disease. If you wish, I wrote a more detailed description of the process on my Caring Bridge Website located at https://www.caringbridge.org/visit/chrisshepard
Please do not hesitate to contact me if I can be of any assistance. Wishing you all the best!
November 29, 2018 at 1:31 pm #97848
- This reply was modified 2 years, 5 months ago by Constructioncm619.
Welcome to our community. My heart goes out to you and your mother. She is going through a heartbreakingly difficult ordeal, not helped by the seeming conflicting information you are getting from the various medical practitioners who are seeing her.
Cholangiocarcinoma is a rare cancer, and sometimes it is hard to fathom what this means until you start realizing that the doctors and nurses attending your mother may have seen few or even no other cases before. Moreover it is complex to treat. The best advice is to try to get your mother seen as soon as she is comfortably able by someone who really knows this cancer, e.g., at the cancer center that she was originally slated to go to, or another option if there is one available. There hopefully will be treatment options for her, but at minimum, you and she will get better advice about managing her care. It is common that with a treatment or care plan worked out with the experts at the major cancer center, you can arrange to have at least some of the day-to-day part take place at a facility closer to home.
I don’t know if this would be helpful in your mother’s case, but some of the major cancer centers do offer remote second opinions where you send the medical records and scans electronically. If she cannot travel, this idea might be worth exploring. I don’t know if some of her particular concerns such as the blood clots would mean her case needs to have the doctor directly examine her. Your local doctor might be able to advise on this. Please also check with the insurance company beforehand to know if it is covered, before you go this route.
I am not a doctor, but I am puzzled your mother’s caregivers are not pushing to figure out whether it is ascites that is causing her bloating. Ascites can be treated, by draining or by other methods prescribed by a doctor such as diuretics or limiting salt intake. And it can relate to how the liver is functioning, something important for her doctors to follow. So this is a question I would suggest you ask at the next contact with her doctor.
I hope your mother regains her strength and feels more comfortable. Please stay in touch and let us know how your mother is doing. There is a community here that knows what you are feeling and hopes to be of help.
Regards, MaryNovember 28, 2018 at 2:25 pm #97845Caitlin16Participant
My name is Caitlin and my mother Judi was diagnosed with bile duct cancer in October. It was somewhat of a gut punch to us as she had just been told in May that she was cancer free, she had a previous diagnosis of uterine cancer in June of 2017. She had a hysterectomy, 16 weeks of chemo and 5 weeks of radiation. She received treatment at Karmanos in Detroit as we are only an hour away and Dr. Morris is one of the top oncologist for uterine cancer in the state.
The issues started when her PCP noticed that she had a hernia, we were told that that is pretty common after having the hysterectomy. she had been having a hard time eating big meals for a few months after she finished her treatments, and we attributed it the hernia, as part of her stomach was in the hernia. She was given the all clear by her oncologist to go ahead with the surgery. The surgeon also took out a substantial amount of scar tissue while he was in there. We were told everything went well with the surgery, this was at the end of September.
About a week after her hernia surgery she became very jaundiced. We took her back to the hospital where she got the hernia surgery and they did a CT scan, and immediately admitted her to the emergency. The scan showed two large cysts on either side of her stomach, and we were told it was outside the scope of the local hospital to do anything, so she was transferred to Henry Ford Hospital in Detroit that night.
She was in Henry Ford for 8 days, they did not know where the cysts came from or what caused them we still do not have an answer to this, they took a sample of the fluid in them, as well as putting a temporary stent in her bile ducts as the bile duct was inflamed. They took a scraping of the bile duct tissue while they were there. She had also been having pain in her back and her left shoulder, and when we told them of that pain they ordered a bone scan. The bone scan showed that cancer has spread to a spot on her spine, her shoulder and her hip. They suspect the bone cancer is from her original uterine cancer, but they did not do a scraping to know for sure. The liquid in the cysts was bacterial, so she was put on a cocktail of antibiotics and when they drained some of the fluid she was able to eat more than she had been able to in weeks, so they ended up putting a stent in the bigger cyst to drain into her stomach.
The scraping from the bile duct showed that is was cancer. We told them that we wanted to go back to Karmanos for treatment since she had been comfortable with them before, and after we said that it felt as though Henry Ford was done with us, and they released her soon after. The only follow up we were given was to get into her primary care physician when she got home and then follow up with Karmanos from there, and that they would call to make an appointment to put a permanent stent in her bile duct in a few months. She was not given any blood thinners when they discharged her.
We had set up an appointment with Karmanos in November because that was the earliest we could get in. However our plans were derailed. Her ankles were swollen when she returned home from Henry Ford, the floor Dr. said that she had to give her an abundance of liquids due to the fact that her kidneys were close to failing. She said the swelling should subside with time. Her PCP prescribed her diuretics to try to get rid of the fluid, as she was having a hard time walking because her feet were so swollen. The Thursday before Thanksgiving we had to take her to emergency. Her left leg had nearly doubled in size and her right leg was also extremely swollen and they were both painful. She also was having a difficult time breathing.
After initially thinking it was Pneumonia, she was admitted to McLaren Hospital in Port Huron Michigan, our local hospital. They found that she had several blood clots in her left leg and one in her right. She also had a Pulmonary embolism. After a CT scan, it showed that she had fluid buildup on her lungs, as well as several spots on her liver and a few spots on her lungs. They were able to drain fluid off of her lungs, 700 cc of it and we were told there was still more. The CT scan did show that her stent in the bile duct was still working, and the bigger cyst had drained completely and the other one was getting smaller.
They told us she is not a candidate for surgery.
After speaking with the oncology Nurse Practitioner, she suggested that we get my mother on palliative care and she wanted to send her home to be with us on Thanksgiving. She said it could potentially be her last one and that she should not spend it in a hospital she should be with her family, and work on getting stronger in the hope that she will be strong enough for a treatment down the road. She was released last Wednesday the day before Thanksgiving.
We received many mixed messages within that hospital, the hospitologist essentially told her that she had six months to live and to forget about palliative care that she was basically in hospice, and that as he put it “It’s everywhere.” However when we spoke to the oncologist he told us that chemo would be the likely treatment, and once he got the pathology from the fluid on the lung he would be able to decide which course of treatment to go with. He told us not to hit the panic button yet. We only saw him once in the six days she was there. The oncology nurse practitioner, who has been great through all of this, told us that she wanted palliative care in the hopes that she could work to get stronger and that they would use it to treat the symptoms to gain her strength.
We saw the palliative nurse practitioner and she was just as baffled with how this was being handled as we are. She said she doesn’t understand them sending her home and giving us the impression that nothing could be done when they hadn’t even tried to fight it. My mother has made it clear since we got the diagnosis at Henry Ford that she wants to fight. She is only 58, and doesn’t want to give up.
The big setback is that her legs are still swollen, she is on blood thinner and they have gone down significantly, her right leg is almost back to normal, however she is going to be limited in what she is able to do travel wise, and the pulmonary embolism will take 3 to 6 months to fully dissipate. She also has not ambulated on her own in weeks, and as a result her muscles are extremely weak and she has lost a lot of muscle tone. She has a visiting nurse once or twice a week, is on oxygen and she has seen a physical therapist and occupational therapist. They have given her exercises to do in bed to try to build strength up, but at this point we have been told that she is not a candidate for chemo because she just is not strong enough and it would do more harm to her in this state than good. She is also still not able to eat anything significant, she can tolerate fruit and protein shakes, but that is about it. She feels full and her stomach is very bloated. The palliative nurse practitioner said it could be ascites, and that it is a possibility to get those drained. The visiting nurse today however told us she is not sure if they will be able to drain the fluid in her abdomen because of the blood thinner.
It has been nothing but frustration on top of a devastating diagnosis because we just feel as though everywhere she has turned we have been getting different messages and mixed signals. I am also frustrated that this was not caught earlier as she had a PET scan in January at Karmanos and we were not told anything negative about the results.
I would like to get a second opinion as I think a larger hospital would be better equipped to handle this than our local one, even though I have heard nothing but good things about the oncologist here. The palliative nurse practitioner suggested if we wanted a second opinion to look at Karmanos in Detroit or the University of Michigan. As I said before however, the issue we are going to run into is getting her to the appointment if we do decide to get a second opinion. But it sounds like the doctors here are going to wait for her blood clots to dissipate before they do anything, but I think by then it might be too late. She is supposed to have an appointment with the local oncologist on December 7th but I am not sure what he will even tell us at this point.
If anyone has any advice on what we should ask, or do or who we should see it would be greatly appreciated. Right now we could really use a solid game plan and something to go off of, because I feel like the last week has just been watching her suffer and not knowing if anyone was going to do anything substantial to try and help her.October 18, 2018 at 4:05 am #97660MaryPParticipant
Thank you for your kind words and suggestion.
Will surely consult with th oncologistonc radiation for the bone metastases; and based on how mother takes the current (harsher) combination chemo regimen. Each day (sometimes even mornings and evenings) is different for her; sometimes in pain & weary while other times cheerfully chatting with her grand kids!
JohnyOctober 17, 2018 at 3:04 pm #97659
I am glad you found the Cholangiocarcinoma Foundation website, but very sorry to hear about your mother’s diagnosis. I hope she is tolerating the chemo well.
You mentioned her cancer was also found in the L4 and L5 vertebrae. Some of our patients have reported having radiation to address bone metastases, including to reduce any pain. Since I am not a doctor, I don’t know if that would be something relevant or not to your mother’s case but it may be something to ask her doctors about.
Your support is a blessing to your mother as she pursues her treatment. Please stay in touch.
Regards, MaryOctober 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, Mary
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