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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.
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 4 months 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