Forum Replies Created
Welcome to our community. I like your user name, and also hope that your sister feels better.
Cholangiocarcinoma has few symptoms in the early stages, and for many of us it is discovered when we are treated for something unrelated. In your sister’s case, from what you describe, the cancer revealed itself with your sister’s pregnancy. As difficult as that was, the earlier this cancer is found and treated, the better for the patient. It sounds like your sister’s doctors have figured out a treatment plan for her.
There is a lot of good information for patients and caregivers on this discussion board, and on the website of the Cholangiocarcinoma Foundation. Please send any questions you have. We are patients and caregivers so cannot give medical advice, but have a great collective experience coping with this rare cancer that may be of help to you and your sister.
Take care, regards, Mary
After a lot of trial and error, my go to remedy has been Bisacodyl 5 or 10 mg at bedtime plus an over-the-counter probiotic, together with lots of water, fiber and exercise (taking walks). Bisacodyl is not for everyone as it can cause cramping. Any laxative you try should be checked first with your doctor to be sure it does not interfere with any treatment or with recovery from surgery. There are many remedies out there, but it can take some trial and error to identify what works for you.
Regards, MaryAugust 13, 2019 at 2:44 pm in reply to: Starting radiations Monday 11th March with xeloda chemo #98968
I am glad to hear you have started your trial, but sorry you are having so many side effects. I hope they calm down or at least can be managed. What type of new drug is being added to the gem-cis? Fingers crossed the trial treatment brings you good results.
I am sorry to hear that your mom is battling our rare cancer. As you heard from vtkb, with our cancer it is essential to receive skilled medical advice from doctors who have seen a lot of cholangiocarcinoma patients. The Cholangiocarcinoma Foundation website has a provider map tool that can help you find doctors and treatment centers in your area.
Generally surgery is not offered in cases where the cancer has spread outside the liver and bile ducts, although there are occasional exceptions based on the surgeon’s judgment. Once the cancer has spread, the concern seems to be that the surgery could do more harm than good, so doctors turn to chemo and other treatments in hope of shrinking the tumors and keeping the cancer stable.
There are a lot of cancer drugs being tested through clinical trials. It is not clear to me why your mother would not potentially be a candidate. If you go to clinicaltrials.gov you can search for trials in your area or as far away as your mother might be willing to travel. You can try several searches: “cholangiocarcinoma,” “solid tumor” and “biliary cancer” would bring up a set of trials. Each trial listing toward the bottom gives information for a point of contact whom you can call or write to and see if your mother might be a good candidate.
Often the trials are offered when the initial treatments lose effectiveness — each trial listed at clinicaltrials.gov will tell you the requirements for eligibility. But with this cancer, doctors and patients look to have their Plan B and even Plan C in mind (just as your mom’s doctor is mentioning possible radiation.)
I hope your mom’s treatment keeps her cancer well controlled. Please take a look at the many patient and caregiver resources on the Foundation website and please send any questions our way.
Regards, MaryAugust 3, 2019 at 7:35 pm in reply to: 2019 Cholangiocarcinoma Foundation Annual Meeting Videos #98941
Information on the 2020 Annual Conference of the Cholangiocarcinoma Foundation will be posted on the Foundation’s website. It is a little early so there are not yet many details, but if you check back from time to time, more information will become available.
Here is the current link: https://cholangiocarcinoma.org/misc2/2020-annual-conference/
I would really recommend that patients and caregivers take a look at this, and consider attending. While there is not yet information on conference plans for 2020, in some years in the past there have been scholarships to help with costs of attendance. The conference is a wonderful opportunity to meet other patients and caregivers, learn about the latest treatments and research, and hear presentations from some of the top doctors and researchers. I first attended the conference a bit over a year after I was diagnosed, and it was the first time I met other patients with the same cancer. I came away with a lot more hope, with a lot of information to share with my doctors, and with new people in my network.
Salt Lake City is a beautiful place to visit as well. We will post additional information on the conference on the discussion board as it comes available, or you can check when you look at the Foundation website.
Regards, MaryJuly 31, 2019 at 10:12 pm in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98924
It is good to hear from you. Your message conveys how much support and care you are providing your husband as he pursues difficult treatments and experiences good days and bad ones.
If chemo side effects become too much to tolerate, doctors will sometimes offer to reduce the dose a bit, or stretch out the infusions. A different chemo is also a possibility, but it seems that if a chemo is working and the patient can tolerate it, the recommendation will generally be to stay the course. Generally if there has been progression of the cancer with a particular chemotherapy, it is not used again with the patient because the cancer may have mutated and become resistant to it.
I hope the upcoming scans bring good news and that your husband’s side effects subside.
Take care, regards, MaryJuly 31, 2019 at 9:50 pm in reply to: Starting Rick Simpson Oil with Grandmother – Stage 4 CC #98923
Thank you for sharing your grandma’s good news of tumor shrinkage. Fingers crossed her treatments continue to show good results.
One suggestion from our collective experience is to be sure any surgical opinions come from surgeons very experienced with cholangiocarcinoma. The surgery needed can be technically difficult, and there is a risk a less experienced surgeon might say that surgery is not possible. I had personal experience with this, where my first surgical opinion said that my tumor was not resectable, but with a different surgeon, the opinion was thankfully a green light. Other patients and caregivers have reported similar stories.
Regards, MaryJuly 29, 2019 at 8:44 am in reply to: Starting radiations Monday 11th March with xeloda chemo #98916
I wish you had had better news after the radiation treatments. It sounds like your doctors have a good next plan in mind, however.
Four years of keeping this cancer under control through treatment is a noteworthy accomplishment, and gives hope the upcoming clinical trial will also do its job. Which trial will you be enrolling in?
Take care, regards, Mary
It has to be beyond frustrating for your husband and you that his nausea and vomiting are not under control. Chemo regimens usually have a point in the cycle when the nausea is most severe – for some chemos it is around the day it is administered, and for others the bad days start later on in the cycle. If this is the case, the timing of the nausea may help in figuring out how to combat it, plus there is a little mental relief in knowing not all days will be bad. There are multiple anti-nausea meds used with chemo. Some are administered at the time of infusion, other just before, others throughout the cycle. We learn to push the doctors to try different meds if the initial ones do not work. In my own case, one of the anti-nausea meds I was given did not help and actually had some side effects of its own, so I was switched to another that worked better.
The cancer organizations suggest that some patients find relief with complementary treatments such as acupuncture and relaxation techniques. Some patients have found ginger products to help, but for these, it is necessary to check first with the oncologist because there are a few chemos that ginger will interfere with. My own chemo nausea was not as severe as you describe, but I found some chemo patient anti-nausea lollipops on Amazon and they helped a little bit.
I hope you find answers quickly to bring your husband’s nausea and vomiting under control. Take care, regards, Mary
Thank you for your note. Radiation is used in some cases with our cancer, so no one should be generically negative about it. It would take an opinion from a radiologist experienced with cholangiocarcinoma, however, to determine if it is an appropriate treatment for your case, either now or in the future. Whether or not it can be used depends on factors such as the location and size of tumors.
Hi Melanie, Hi Jlfa738,
A warm welcome to both of you to our community. I am sorry to hear that your loved ones are battling nausea and poor appetite. Please take a look at the resources for patients and caregivers on the Cholangiocarcinoma Foundation website. As you mention, a cancer diagnosis can be overwhelming — hopefully these resources can be of assistance as you navigate the medical maze.
Maintaining appetite and good nutrition can be challenging for patients under treatment. The usual recommendations for small meals, foods that are easy to digest, protein shakes, and similar are all good ones for our patients. Another concern is finding the right mix of anti-nausea meds if the chemotherapy is causing nausea. If these types of solutions are not working, it is important to consult the oncologist – it may be that the cancer itself is causing blockages in the digestive system or there are other problems (e.g., constipation due to pain meds) affecting appetite. Ascites (fluid in the abdomen) as mentioned by Jlfa738 is one example of a cancer-related issue that affects appetite, and which doctors can help resolve.
Cancer treatments can be tough, and patients experience ups and downs. Your efforts to push for attentive medical care to address side effects and symptoms are important – usually there are options to help relieve discomfort. If your treatment center offers palliative care resources, this may be helpful to investigate. Palliative care is intended to help relieve discomfort and maintain quality of life for patients undergoing medical treatment. Melanie, I hope your husband’s new chemotherapy is effective and that he feels better. Jlfa738, it was good to hear that your mom’s doctors identified ascites as the culprit and are taking steps to keep her more comfortable as she pursues her treatment.
Please stay in touch and send any questions our way. Take care, regards, Mary
Welcome to our community. I am glad you have found us, and hope you have been able to explore the many patient and caregiver resources on the Cholangiocarcinoma Foundation website.
HIPEC is the acronym for hyperthermic intraperitoneal chemotherapy. HIPEC is a treatment involving surgery, where heated chemotherapy is introduced directly into the abdomen to bathe and hopefully eradicate cancer cells found in the peritoneum.
HIPEC has been used for a few cholangiocarcinoma patients. Here is a link to a study on HIPEC for cholangiocarcinoma that Gavin had posted some time ago.
As the description suggests, HIPEC is a very demanding treatment mainly deployed in specialized cancer centers. To explore whether your husband is a good candidate, it would be important to seek opinions at top medical facilities with strong capabilities in cholangiocarcinoma and other gastrointestinal cancers. The provider map available on the Cholangiocarcinoma Foundation website may be helpful if you are located in the U.S. The author list on the attached article above may also give clues about facilities that use HIPEC for our patients. (Click on “author information” to see where the authors are affiliated.)
If you search the discussion board for HIPEC, you can find some additional information as patients and caregivers before you have looked into this treatment.
I hope this is helpful. Please stay in touch. Take care, regards, Mary
It is good to hear from you and that your doctors have treatment plans in mind.
My understanding is that the patient outcomes from chemotherapy delivered via a hepatic arterial infusion (HAI) pump generally have been positive when compared to other chemo options. As you mention, one benefit is lighter side effects given that the chemo goes straight to the liver. There are two cholangiocarcinoma patient blogs I am aware of by patients who were treated using the pump. Both patients reported a positive experience having chemo delivered via HAI. Here are the links:
https://becauseicansir.com/ (Look at the posting for April 7, 2018).
http://nowwithouthesitation.blogspot.com/2016/09/me-and-my-pump.html (Look at postings around September 2016) Sadly, the author of this blog passed away earlier this year.
I hope this is helpful. If you have any additional questions or concerns, please send them our way.
My experience after surgery was similar to what Hannah reports. A liver resection is a major re-plumbing, and it can take a while for the digestive tract to settle down and for patients to adjust to the new normal. Also, my recollection is that recovery from the anesthesia and the post-surgery pain medication also affected my appetite. The usual recommendations for small meals, avoiding hard to digest foods and supplementing with juicing or protein drinks are helpful. If there are severe disruptions to eating, this should be reported to the surgeon. My recollection was that it took maybe three weeks to get back to semi-normal eating, and I was not eating much at all in the first week after surgery.
I hope your mom recovers quickly from her surgery and is feeling better.
Welcome to our community, but I am sorry that your diagnosis brought you here.
I am a patient myself, not a medical person, but can provide some general information in response to your questions. The gem-cis chemo treatment you are receiving is standard of care for our cancer when surgery is not possible. You raise a good question about radiation. Radiation is used with our cancer, but it is used with care to avoid harming the liver. A principal goal of treatment is to preserve good liver function. The geography of a patient’s tumors is an important consideration for treatment recommendations. If tumors are too large, too numerous, or near major veins, or if the radiation would have to also affect nearby organs in a risky way to get at your tumor, then it would not be recommended. Sometimes doctors try chemo first because in many patients it will shrink the tumors or eliminate small ones, and this can open the door to surgery or ablation or radiation.
Also, the liver-directed therapies tend to be used in patients whose cancer is confined to the liver. If there is suspicion cancer is moving beyond the liver, systemic therapies are more commonly used. This is not always the case, so again, good medical advice should be sought to identify the best possible treatment approach.
It is imperative with cholangiocarcinoma to be seen by experienced doctors, which generally means in major cancer centers. The Cholangiocarcinoma Foundation website has a tool – a specialist map – posted on its website for finding doctors, which is based on insurance data showing which doctors are treating a lot of our patients. This tool (link provided below) can help you locate doctors who are specialized in cholangiocarcinoma.
Generally the major cancer centers will have a team of doctors of the different relevant specialties (“tumor board”) review cholangiocarcinoma cases, to determine which treatments (you listed several of them) are the best options. You may wish to consider seeking an opinion from an experienced radiologist about whether you are a candidate for some of the treatments you are interested in.
Please take a look at the many resources for newly diagnosed patients on the Cholangiocarcinoma Foundation website. I hope you will stay in touch, and send any questions our way. Patient stories posted on the discussion board are a valuable source of information to others who will walk our path in the future.
Take care, regards, Mary