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Welcome to our community. I am sorry to hear that your father is experiencing such a difficult time with his treatment. He is lucky to have your support and assistance as he deals with chemo and treatment side effects.
A few other patients on this board have reported post surgery issues including drain problems. I think in some cases, a second opinion from another surgeon helped in terms of identifying potential solutions. The treatment regimen your father is following is an aggressive one, and may be difficult for some patients to sustain. I am not a medical person, but my advice would be to ask what the trade-offs might be in reducing doses or otherwise toning down the chemo. It also would be beneficial to push for more information as to why infections keep reappearing. Is it the chemo, or the drain issues, or general poor health status that keeps the infections recurring?
I hope your dad recovers soon from the latest infection and can be released from the hospital. Please take a look at the caregiver and patient resources on the Cholangiocarcinoma Foundation website, and send any questions or concerns our way.
The gemcitabine with cisplatin chemotherapy combination is considered standard of care as a first line treatment for cholangiocarcinoma when surgery is not possible (“nonresectable”). First line means it will be the first chemo tried. The results of a past clinical trial (“ABC-01”) undertaken in the U.K. showed that the two chemos taken together are more effective than gemcitabine alone, and the results of this trial contributed to establishing this chemo regimen as a go-to approach for nonresectable cholangiocarcinoma.
Standard of care does not mean that everyone gets the same cookie-cutter treatment. Oncologists look at the specifics of each patient and determine an appropriate treatment regimen, which may or may not be gem-cis. Factors that may be considered include the patient’s health status, the location and aggressiveness of the cancer, and the oncologist’s own clinical judgment of what treatment is most appropriate and likely to be effective.
Chemos tend to lose effectiveness over time–sometimes because the cancer mutates and becomes resistant. When this happens, a second-line chemo treatment may be selected. Folfirinox, which I will describe further below, is an example of a chemo regimen that may be used as a second-line treatment for cholangiocarcinoma. There is not yet a second-line chemo considered standard of care for cholangiocarcinoma, to my knowledge, so there are several different ones reported by patients and caregivers on this board. Some have similar names – folfirinox is different from folfox which is different from folfiri. The selection criteria for a second-line treatment would be the same as mentioned in the paragraph above.
Folfirinox is a combo of four drugs: folinic acid, fluorouracil (or 5FU), irinotecan and oxaliplatin. The first drug is a vitamin which protects against some possible adverse side effects of the chemo, and the last three are the chemos. Because this regimen involves three chemo drugs, it is described by some (not all) patients as a tougher one to tolerate; however, it has shown effectiveness in slowing down the cancer. If you search folfirinox using the discussion board search engine, you will find stories on patients who had this treatment.
Patients tend to hone in on their CA 19-9 results as strong signals of how they are doing. My CA 19-9 gets measured every two months and waiting for the results always causes anxiety and worry. That said – interpreting CA 19-9 movements during treatment is best left to doctors. CA 19-9 does not always track disease progression and the treatments themselves for some patients will induce temporary increases in this tumor marker. This number is just one bit of information that is factored into the overall picture, which also includes imaging, patient symptoms, and other blood tests such as liver enzymes. I am repeating what my doctors have said about not paying so much attention to CA 19-9, and it is a reminder to me to try and listen to that good advice myself.
I hope the folfirinox is effective in bringing your family member’s cancer under control without too many side effects.
Hi to Mims1924 and your husband,
Welcome to our community of patients and caregivers, but I am sorry you had to find us. As you describe, cholangiocarcinoma can be complicated to diagnose. It sounds like your doctors are working toward a good treatment plan.
Usually second opinions at the time of diagnosis center on whether or not the tumor is operable. Surgical opinions can differ among surgeons, and job one at the time of diagnosis is to figure out if the tumor can be surgically removed. Is surgery being offered, or are the doctors recommending chemo first?
Gem-cis is the workhorse chemo for our cancer – it is generally tolerable for patients with manageable side effects, and for most (not all) patients, gem-cis will slow down or stabilize the cancer.
If the doctors are taking a tissue sample, be sure to ask about having genomic profiling performed. Many cholangiocarcinoma patients have genomic defects for which there are targeted therapies in development and available through clinical trials. The Cholangiocarcinoma Foundation website has material on this important topic under the heading “Mutations Matter” that I would urge you to look at if you have not done so already. There is a wealth of good information generally on the website for newly diagnosed patients and their caregivers.
Going back to the topic of second opinions, there is a specialist map on the Foundation website that can help you find other medical centers and doctors with experience in cholangiocarcinoma. The specialists on the map are those which insurance data show to have the highest volume of cholangiocarcinoma patients. Given the rarity of our cancer, it is imperative to find a medical team that has a lot of experience with our patients.
I hope the remaining diagnostic tests help determine a good way forward with treatment. Please send any questions our way.
Take care, regards, MaryJune 12, 2019 at 6:35 pm in reply to: Imaging studies during chemotherapy: CT vs MRI vs PET-CT #98744
You asked about which scanning mode is best for cholangiocarcinoma. My expertise is as a patient who asks a lot of questions to my doctors, and from learning from the experiences of other patients and their caregivers.
Usually the oncologist selects the scanning mode based on what he or she is trying to look at. Most of our patients seem to be sent for chest-abdomen-pelvis CT scans, although sometimes MRI is used if there is reason to focus on the liver. The choice seems to involve which features of the liver and other parts of the anatomy the doctor wants to examine in detail. The most common sites of metastasis for cholangiocarcinoma include in the liver, lymph nodes, lungs, bones and peritoneum, so the hunt for metastasis will look at these areas, as well as any other areas the doctor is worrying about based on what he or she hears from the patient.
PET scans seem to be reserved for when there are indicators the cancer is spreading, and the oncologist is looking for where new metastases might be appearing. Sometimes if a CT scan is inconclusive, an MRI or PET scan will be ordered to clarify any concerning features that show up on the CT scan.
So my impression is that one type of scan is not always better than another – the choice depends on the purpose of the scan at the time it is ordered. Doctors will listen to patient and caregiver input regarding the type and frequency of scans, but may resist some scanning if in the oncologist’s judgment it will not add any additional information. In addition to the cost, the radiation and contrast agents create risks for patients, so doctors would tend to discourage scanning that seems not to offer sufficient benefit for the patient.
Regards, MaryJune 12, 2019 at 6:18 pm in reply to: Round up of st benefical supplements from forum user-inputs? #98743
Welcome to our community. I love your user name, it really expresses how most of us feel when we or a loved one gets a cholangiocarcinoma diagnosis. It is good to hear your mother is getting through her treatments without too much discomfort.
You raised a question about supplements. In terms of the medical literature, to my knowledge, there are no supplements that have a proven connection to curing or slowing the progression of cholangiocarcinoma. Nutrition and diet can help a person achieve better health, and certainly being healthier aids in fighting cancer, but there is no direct medically-verified link that I am aware of between a specific supplement and cholangiocarcinoma.
Some supplements and vitamins can, however, make the prescribed cancer treatments less effective. I recall, for example, that I was warned by my radiologist not to take certain vitamins during radiation treatment because they interfere with the radiation. So any supplements a cancer patient is taking should be reviewed first with the oncologist to be sure they are not going to impair treatment.
I hope the chemo does its job for your mother, and her upcoming scans bring good news.
Welcome to our community. I am so sorry to hear of your diagnosis. Cholangiocarcinoma is a rare cancer, so it is good you are making arrangements to be seen at a specialized hospital with experience.
Please take a look at the new patient resources on the Cholangiocarcinoma Foundation website.
It adds to the anxiety of a cancer diagnosis if your insurance impedes getting the care you need. You may wish to look at the specialist map on the Foundation website to see if there are any cholangiocarcinoma experts in other nearby medical centers your insurance would cover. A number of patients posting on the discussion board have been treated at Moffatt, for example.
The other suggestion I would make is to ask your doctors about genomic profiling. Many cholangiocarcinoma patients have genomic defects related to their cancer for which there are treatments being developed. Usually these targeted treatments are not the first line of action, but for many patients they become important later on and this is where much of the research and clinical trial activity is taking place for our cancer.
Please send any questions or concerns our way. Because this cancer is a rare one, it can be hard to find good information. There is a lot of good patient and caregiver expertise represented in our community and we are here to be of help.
Regards, MaryJune 11, 2019 at 8:53 am in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98731
Hannah’s advice from her mom’s experience is spot on and what others on this board have described. The medications prescribed to address pain or treatment side effects are intended to nip symptoms in the bud, when they first emerge. When patients try and tough out symptoms without the meds, and only reach for them when pain or nausea are out of control, the meds do not work as well.
It also helpful to try these meds out early on to verify they work for the patient. There are multiple options, so if a pain or nausea med does not work well, another can be tried.
Going back to the question of pain meds, this is a good opportunity to repeat a general comment that pain control works best when it starts early. Pain becomes harder to treat if left untreated until it is unbearable. I know we would all like to be tough, hate having to swallow pills and recognize that the meds for pain and side effects can have side effects of their own. Nonetheless, meds prescribed for pain and side effects have their important place in cancer treatment, in helping us maintain a good quality of life as the chemo and other treatments are wrestling the cancer to the ground.
I hope your husband is feeling better. After a cycle or two, usually the bad days of the cycle can be identified and planned for. I was working while having chemo and learned to time the bad days to the weekend.
Take care, regards, Mary
Welcome to our community.
Financial assistance programs for rare cancers are lamentably rare. Just over a year ago I contacted about a dozen of the cancer financial assistance program organizations and at that time, none of the groups I contacted had funding for cholangiocarcinoma. There are a few ideas however you might consider trying:
Look for financial assistance programs for treatment components. I have seen references to programs for pain management and neutropenia (low white blood cell counts due to treatment), for example.
Look at the company websites for individual drugs to see if they offer patient assistance programs.
Consider finding programs that offer other types of financial support, such as transportation, childcare or lodging, if you are bearing these types of costs as part of your treatment. Some of these may be local in your community.
If you are being treated in a hospital setting, you may wish to reach out to its financial office to see if it can help in any way.
Don’t forget that in some cases medical costs can be deducted from federal income taxes if you itemize. Fewer of us are itemizing now with the new tax law, but if you have toxically high cancer treatment costs, this avenue may offer some relief. If you think you might be able to itemize, take a look at the IRS tax booklet on medical expenses to be sure you are saving receipts for every last item that is eligible (e.g., parking receipts).
Finally, it is worth really scrutinizing your health insurance policy to see if there are ways to get copay costs down. As an example from my own experience, the scans I was having every few months at my oncologist’s hospital radiology department were being billed at about $6500 and my copay was about $1000 after deductible. I switched to a less costly insurance that only covers outpatient scans at a non-hospital free-standing imaging center. This change forced me to do research into which imaging centers in my area had comparably sophisticated scanning equipment, were on the same patient portal as my oncologist and were covered by my insurance. I found the charges at the free-standing centers to be a lot lower and asked my doctor to write the orders for scans accordingly. After consultation with my doctors, I now have my scans at a center about 40 minutes away from home, and I like the center and its radiology folks very much. My last scan was billed at about $1100 with a correspondingly lower copay ($60 after deductible). It did take a day’s research, doing spreadsheets and phone calls to verify scanning equipment to get to a better place cost-wise. I cringe thinking how much I could have saved if I had only thought to investigate earlier how to lower my scan costs.
I hope this is helpful. If any board members have found creative ways to lower the financial burden of their medical treatment, please add them to this chain.
It is nice to hear from you and thank you for posting an update. It is great that your headaches are resolved and treatment is going well.
I don’t have personal experience seeking approval for abraxane but wanted to pass along a tip for discussion board readers wondering if insurance will pay for a treatment. Some insurers post their medical policies on their portal. A former insurance I had offered no explicit links on the portal to its medical policies but if you typed “policies” into the portal search engine a page came up with a directory to policies. Another route is to do a general internet search of the treatment in question and “medically necessary.” “Medically necessary” is insurance-speak for “we may pay for this.” I tried this searching “abraxane” and “medically necessary” and several insurer medical policies came up, including some that seemed to define circumstances where abraxane could be medically necessary for certain cholangiocarcinoma patients.
Fingers crossed that your next scans bring positive news.
Take care, regards, Mary
CA 19-9 numbers are just one piece of information among several that doctors use to make treatment decisions. One of my doctors told me that he looked for a doubling or tripling of the number. Complicating this topic is that sometimes the treatments themselves can temporarily raise the number.
Doctors can’t base treatment solely on a tumor marker because the number does not say anything about where and how the cancer is evolving. Usually the next step if a rising tumor marker looks concerning to the oncologist, is to order scans to take a look at what is going on. When are your next scans planned?
Regards, MaryMay 28, 2019 at 11:25 pm in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98672
Some of our patients have had radiation therapy for individual lymph nodes, also to alleviate pain and to slow down the cancer’s progression. I hope the therapy works well for your husband. Gem-cis is an effective chemo for cholangiocarcinoma, with many patients seeing either shrinkage of tumors or their cancer stabilized. The concern with mutation is why, with this cancer, it is always good to be thinking one step ahead as to what the next treatment will be if or when the current treatment loses effectiveness. From what you describe, your husband’s doctors are thinking about this, for example, by flagging an upcoming clinical trial.
A point that seems to come up a lot for patients is pain management. This is a concern that needs to be strongly pushed with doctors, to find the medications and other treatments that keep pain under control. There can be a lot of trial and error in figuring out the right mix and the right mix may change over time. I hate to see stories of patients having a pain medication prescribed by the oncologist that is not working, where patients feel they must soldier through.
I hope that your husband’s treatments go well and get the cancer back in check. Take care and regards, Mary
I am so sorry to hear the news of your mother’s passing. This must be very hard to accept given how quickly she succumbed to the cancer. Please accept my condolences and prayers.
Regretfully, because cholangiocarcinoma can be fairly symptom-less until it is very advanced, patients like your mother may be further advanced than appearances would suggest. Some patients are discovered to have cholangiocarcinoma at a point where it is too late for treatment, even though the diagnosis is unexpected. Your frustration at not getting a better diagnosis is very understandable. I know you were doing all you could to get good medical advice and keep her comfortable. With the cancer apparently very far along and your mother’s poor health, there may not have been much more that doctors could have done for her.
Not having a doctor’s assessment of how long she had remaining was a concern you had raised. My impression from reading many patient stories is that there is not a good way to estimate with precision how long a patient will survive, so it may not have been possible for a doctor to give an accurate prognosis.
Your loving care and concern for her well-being surely brought your mother much comfort as she faced this difficult challenge to her health.
Best wishes to you and your family. Regards, MaryMay 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.