Forum Replies Created
May 24, 2019 at 3:14 pm in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98668
Thank you for the update. Radiation is effective for many patients in relieving the pain from bone mets. Hopefully it will work its magic for your husband. It is important to be proactive in getting the medical help needed to manage pain, whether through radiation or other means. Some medical centers offer a palliative care practice that supports pain management for any patients whose illnesses may bring pain; this may be something to investigate in addition to whatever the oncologist recommends.
Your comment about the unreliability of CA 19-9 testing to flag recurrence is an important one. I saw a research study along the way that showed, for its sample of cholangiocarcinoma patients, that only about half saw their CA 19-9 rise in advance of recurrence, and this included some patients whose CA 19-9 was high at diagnosis. This is why doctors often tell patients not to get too focused on tumor marker numbers.
I hope the continued treatment stabilizes this recurrence, and that your husband feels better.
Take care and regards, Mary
Just checking in to see if you and your mom have seen progress in having a firm diagnosis and staging. I hope your mother is feeling better.
Take care, regards, Mary
Thanks again to Darragh for reporting on his treatment with the trial drug Acelarin.
Here is an abstract posted by ASCO that alerts us to an upcoming Acelarin Phase III trial for cholangiocarcinoma that will involve centers in North America, Europe, and Asia/Pacific.
There is also an abstract reporting results from an earlier trial that had a small number of cholangiocarcinoma patients:
Gavin and I will keep an eye out for additional information as it comes available.
Thank you for letting us know how you and Peter are doing. It is good to hear that Peter’s bilirubin is back to normal range and he has a treatment plan through the clinical trial. I hope it brings positive results. I looked Peter’s trial up on clinical trials.gov and was reminded again how resolutely the medical community is pushing the boundaries of cancer treatment.
From what you describe, the external drains are doing their job but not without inconvenience and discomfort, plus a worrying incident of sepsis. Hopefully this will get better.
We all look forward to your next update. Take care, regards, Mary
It is great to hear from you and that you are doing well after three years.
Acelarin is a promising new drug in development, with potential for cholangiocarcinoma and other cancers. My understanding is it is still in testing in the U.K. (home of a lot of cutting edge cholangiocarcinoma research). Did you receive Acelarin as part of a clinical trial?
Here is a link to an article on Acelarin.
I had read about Acelarin and had the opportunity at the last Cholangiocarcinoma Foundation Conference to speak to several informed folks from U.K. about it. This is definitely something to keep our eyes on. I just looked at clinical trials.gov and there does not yet seem to be a trial in the U.S. for patients with cholangiocarcinoma.
Please keep us posted on how you are doing, and fingers crossed your cancer continues to be well controlled.
Take care, regards, MaryMay 16, 2019 at 2:46 pm in reply to: Addition of Abraxane to Standard of Care May Prolong Survival for Advanced Bilia #98636
Thank you for the link to the full set of abstracts.
Just to clarify – I am not needing chemo at the moment (gratefully am still NED at 42 months from surgery) but in the event I need chemo in the future, it is reassuring to see reports of new and better options. I do mention information from articles you have posted when I see my oncologist because he treats all types of cancer, and seems interested when I bring him news of new effective treatments for cholangiocarcinoma.
Having so many medical article abstracts relevant to our community come out for the upcoming ASCO meeting shows how intensely focused the medical and scientific communities are on finding treatments for our rare cancer.
May 16, 2019 at 8:28 am in reply to: Addition of Abraxane to Standard of Care May Prolong Survival for Advanced Bilia #98633
- This reply was modified 1 week ago by bglass. Reason: Add comment
Thanks to Gavin for posting the recent spate of articles related to cholangiocarcinoma.
If you are like me, and find some of the medical-speak tough reading, I would still suggest taking a glance at this material. Some of the drugs are in testing through clinical trials, which may be something patients are thinking about or will think about in the future.
This report out on adding abraxane to the standard-of-care chemo (gemcitabine and cisplatin) is worth highlighting. While the number of cholangiocarcinoma patients involved in the study is not large, the results are sufficiently promising to take note. I showed these results to my oncologist because they had just come out at the time of my last appointment. One comment he made was this chemo combination involves medications that are available now for cancer patients, as compared to other reports in the medical literature that discuss treatment options only accessible by enrolling in a trial.
Regretfully, this board cannot be of much help in deciphering imaging and pathology reports which requires some medical expertise. Typically the reports describe everything the radiologist or pathologist sees without much interpretation of how significant some of the findings may be. With the input of the oncologist and other specialists, that information feeds into a prognosis and treatment plan. I know it must be really frustrating to lack answers. How soon can your mother get in to see a cancer specialist? Also, it would be good to take written notes with you of all the questions you and your mother have, to be sure you get all the info you need at the appointment. A cancer diagnosis can feel overwhelming and we all have the experience of forgetting to ask important questions during an appointment.
There is a lot of good information on the Cholangiocarcinoma Foundation website for newly diagnosed patients and their caregivers, to help you with your list.
This cancer is really variable. It can be aggressive and spread quickly in some patients; in others it moves slowly. In some patients, it responds well to treatment, while in others less so. Regretfully at this point with the partial information you have, it is probably not very possible to guess how your mother’s case will evolve.
I hope the next days bring some answers. Regards, Mary
I hope your mother continues to recover. I hope also that her doctors are providing more clarity regarding her diagnosis and staging. I am not a doctor, but have observed that bile duct blockages in some patients can cause a lot of issues that may calm down with stenting. So hopefully, with the stent placement, her numbers will improve and she will feel better.
This cancer can be hard to diagnose and stage. Fingers crossed that you and your mother get the answers you are looking for quickly.
Take care, regards, MaryMay 10, 2019 at 9:43 pm in reply to: Good morning from Italy, some advice for second opinion? #98548
I was saddened to hear that your mother’s health has worsened.
It is understandable that, at this moment, you mentioned being worried that your mother’s declining health might be partly due to treatment choices you helped her to make. But please do not be so hard on yourself. Your advice to pursue a trial was similar to choices made by many others in the same situation, often because caregivers appreciate that trial drugs may have fewer side effects which is an important consideration for preserving quality of life. And as you mention, second-line chemos bring their own risks that must be considered. The speed at which a cancer progresses may outpace any treatment chosen. From what you describe, you have supported your mother tremendously, as much as anyone could, with loving, thoughtful care and advice.
The next days may be difficult and heart-breaking, but please know this community has you and your mother, and your family, in our thoughts and prayers. Your continued love and care for your mother will bring her much peace and comfort.
Take care, regards, Mary
Thank you for the update. Chemo plus radiation after surgery is a typical treatment if the surgery outcome identifies risk factors for recurrence. In my case, for example, I had four cycles of gemcitabine with capecitabine followed by five weeks of radiation with capecitabine. If this is the treatment your husband will follow, you can read about it by internet-searching “SWOG S0809” which is the name of the clinical trial for this regimen.
A number of patients and caregivers describe their experiences with the same regimen on the boards, so you may wish to search this site as well.
I am sorry to hear about your mother’s diagnosis and that she is feeling poorly.
We are not medical experts on this website, just patients and caregivers, so cannot give medical advice. The information you provided seems consistent to me with what you were told, namely that more diagnostic information will be required to stage and determine a treatment plan. If the cancer has spread, the initial treatment is usually chemotherapy. If the cancer is just found in the liver/bile ducts, there are more treatment options potentially available but this cancer is complex and your mother’s information would likely need to be looked at by a team (often referred to as a “tumor board”) including an oncologist, surgeon and radiologist, among other specialties. Treatment options would reflect your mother’s health status among other factors. This rare cancer most commonly affects seniors, and many older patients do have success undergoing seemingly demanding cancer treatments including surgery and chemo.
As you will see reading patient stories on this board, cholangiocarcinoma behaves differently in each patient, and experiences are all over the map. In some, it is lazy and slow-developing while for others it can be aggressive and move quickly. At this early stage in diagnosis, my suggestion would be to hope for the best but think your way through how you and your mother would manage different types of scenarios including less optimistic ones.
No one can tell with any certainty what a patient’s life expectancy will be. Doctors will do their best if asked to give an informed answer, but the unexpected can happen. It may be helpful to make quality of life a focus and to be sure that any treatments are well tolerated and any side effects are quickly addressed.
I am happy you and your mom have found our community. Please do take a look at the resources on the Cholangiocarcinoma Foundation website for newly diagnosed patients and their caregivers. If you have questions, send them our way.
Take care, regards, MaryMay 10, 2019 at 8:35 am in reply to: Starting Rick Simpson Oil with Grandmother – Stage 4 CC #98541
Thank you for sharing the news that your grandmother is feeling better and doing well with her treatment. I hope she continues to do well. She is fortunate to have such a devoted and caring family.
Take care, regards, Mary
Welcome to our community. Thank you for posting your mother’s story. I am sorry to hear she is now confronting a stage IV diagnosis, and hope that her chemotherapy is successful in controlling the cancer.
A healthy diet is helpful in maintaining well-being for cancer patients. There is a lot of incorrect information on the web, however, about what cancer patients should or should not be eating. It is important to only consider information from reliable sources such as the major cancer organizations (e.g., American Cancer Society) or major cancer hospitals. Here are a few sites:
If you or your mother are considering dietary changes or supplements, please be sure to first run them by her doctor to ensure they do not interfere in any way with her chemotherapy or diabetes control. From my own experience reading patient stories, I would add that sometimes it can be challenging for cancer patients to maintain their appetites and body weights, and it does not help matters if there is pressure that they only eat unappealing foods thought to be “good” for cancer patients. A balanced, healthful, and tasty diet should be the objective.
If the chemo treatment is causing nausea, the doctor should be able to prescribe medication to help. If one does not work, another can be tried.
I hope you and your mother have found the many resources available on the Cholangiocarcinoma Foundation website. Please send any questions our way.
Hi Patti and Jim,
Welcome to our community, but I am sorry to hear about Jim’s diagnosis. I hope your meeting with the oncologist goes well.
There is a lot of good advice on the Cholangiocarcinoma Foundation website for newly diagnosed patients, and the patient stories on this website will give you a feel for this rare cancer and the questions to be asking doctors. I guess the principal question I would recommend is to be sure your doctors have experience with cholangiocarcinoma. Ask how many similar cases your doctor sees in a typical year.
Please let us know how it goes with the oncologist and send any questions our way. One positive thought to keep in mind is the science for our cancer is evolving rapidly and every year new treatments are emerging.
Take care, regards, Mary