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Thank you for writing. I am sorry to hear about your diagnosis and that you are having insurance problems. This cancer can be very hard to diagnose as in your case, and doctors often have to do a lot of heavy lifting to persuade insurance companies. I suspect the roadblock you describe has to be resolved between your doctors and insurance, but in my own experience, often it falls to patients and caregivers to frequently contact the various parties to be sure balls aren’t getting dropped along the way. For rare illnesses, sometimes it takes more effort with insurance as their reviewers do not have specialized experience.
I hope this can resolve quickly so you can start treatment. Please let us know how this turns out.
Regards, MaryApril 25, 2019 at 11:34 am in reply to: I am a 68 year old woman diagnosed with Cholangiocarcinoma in 2015 stage 1B no l #98506
Welcome to our community. Thank you for sharing your story. I hope the latest tumor board review offers you some clarity about your case and if needed, some good treatment options.
It was positive to hear that your medical providers have worked with you to honor your personal preference of avoiding chemo and radiation. The science is advancing for treating our rare cancer, and there may now be newer options that you may feel willing to consider given your personal views, particularly if your doctors feel surgery is not fully doing the job of mopping up all cancer cells. Have you had genomic profiling to see if your cancer has mutations that can be treated through some of the new non-chemo cancer meds (they are mostly available through clinical trials)? Also, if the cancer is only in the liver, there may be localized treatments possible that can send chemo or radiation directly to the tumor — they can involve much less treatment time and fewer side effects than the older approaches. As an additional thought, a recent study (BILCAP) showed many patients benefited after surgery from adjuvant chemo with capecitabine. Capecitabine comes in a pill form and is lighter on side effects than some of the other chemo options.
Cholangiocarcinoma can be hard to diagnose, just as your own experience highlights. Tumor markers can start moving up months before there are clear findings on a scan, and doctors are cautious because markers are not 100 percent accurate in determining the cancer is returning. Awaiting a clear diagnosis is nerve-wracking – I hope you have answers soonest and, should more treatment be needed, that your doctors work with you to again find an effective treatment you are comfortable with.
Please keep us posted. Regards, MaryApril 24, 2019 at 11:58 am in reply to: pet peeves of cancer.the small stuff i hate. go ahead and add your own #98497
Thank you for posting. Your thoughts are shared by many of us. I am sorry that you are not feeling well, and that the cancer and your treatments have so affected your quality of life. As you describe so eloquently, cancer changes our lives and those of our families in so many ways. I hope your chemo is keeping the cancer at bay.
Please know our community is here for you, and please send any questions or concerns our way. Cancer treatment can be tough and unpleasant at times. I remember feeling like I had to avoid complaining about that because my family, friends and doctors were all being wonderful and I didn’t want them to worry more. This board is a safe space to express how you feel. This particular topic on our board has attracted a lot of authors and readers, and it is appreciated that you took the time to post your thoughts.
Take care, regards, MaryApril 24, 2019 at 8:50 am in reply to: Gemcitabine, Cisplatin, and nab-Paclitaxel for the Treatment of Advanced Biliary #98495
Thank you for posting information on the very encouraging early results for this treatment option. This chemo combination so far is showing promising outcomes in terms of survival, progression-free survival and making surgery possible for previously unresectable patients. The numbers of studied patients who were treated with this regimen so far is small, however, which means more study will be undertaken to be sure of the results. Hopefully the next round(s) of clinical trial testing will continue to show this chemo triplet to be effective. In the interim, certainly this chemo option is one interested patients and caregivers can ask about with their oncologists.
Thank you for the encouraging update on Brian’s super long run with this trial. Hopefully the next trial will bring yet more positive outcomes. Please let us know which trial comes next.
Wishing you and Brian all the best as you navigate this fork in the treatment path.
I am sorry you are not finding others on the board dealing with the HER-2 mutation. With a rare defect combined with a rare cancer, the size of the community is very small, just one of many frustrations with this cancer.
Re the HER-2, I was looking around in the medical articles and there is another treatment, similar to and sometimes used together with Herceptin, which is Perjeta (pertuzumab). This is something you could ask about if you have not encountered it already. Not being a doctor, I do not know if this would be considered for cholangiocarcinoma or not.
Re PD-L1 targeted treatment options for patients with HER-2, I have not found any information for you but will keep looking.
It is good to hear from you and thank you for the update on Patrick. I wish the news were better, however, and as you describe, even as there is an urgent need for treatment decisions to be taken asap, they will be complex and probably involve consultations with multiple medical providers.
I thought about what questions I might ask.
As you noted, better pain management would be a primary concern. Is Patrick being seen by anyone with expertise in addressing pain and quality of life? There are different remedies for pain and if the current approach is not working well, it should be revisited.
Clinical trials would be an option, but it may take research on your part to find candidates that do not involve too much travel. It may be worth, if you have not already done so, a few hours spent on clinical trials.org looking at trial options and calling the principal investigators to doublecheck about Patrick’s bilirubin level and other eligibility concerns. Another key variable to ask about is the washout period which may be a month or so. If Patrick’s cancer seems to be moving aggressively, this may be something to ask doctors about, namely if waiting for a trial poses a risk as compared to moving quickly to a different chemo.
Some patients have reported seeking compassionate or off-label use for treatments, e.g., used in other cancers, that medical professionals feel might be beneficial. There have been a few put on keytruda despite not having the genomic target for it, for example. (I do not know what the results have been in such cases.). So another question to add to the list might be whether there is a treatment of sufficient potential benefit to Patrick that might be available via off-label or compassionate means and equally importantly, if so, will the doctor be willing to devote the time and energy to do battle with insurers or FDA as needed? I would add that approval timelines should be discussed if there is a plan to go this route, because if they are too lengthy, this sort of option may not be the best idea.
As with pain management, there is a lot of experience among medical providers treating ascites although it is certainly wearying for patients the more side effects they must seek treatment for. A question you might consider asking is what does the emergence of ascites mean, if anything, about the course of Patrick’s cancer. It may be of minor consequence, or not, but since this is worrying you, try and get Patrick’s doctor to give more of an explanation of why this is happening.
I think most of the questions that occurred to me are already on your list, and I hope Patrick’s doctors can provide some clarity about potential next steps. Please take care of yourself, and know all of our fingers are tightly crossed that the new treatment plan comes together quickly and brings relief.
When considering treatment at a satellite or affiliated hospital of a major cancer center, it is important to be sure that facility also has experts in our rare cancer.
To give an example from my own case, I was initially diagnosed and treated at Johns Hopkins in Baltimore, but when it came time for chemo and radiation, I asked if that could be done at a satellite facility closer to home. The doctor in Baltimore told me that although he was be happy to give his opinion on anything to my new treating doctors, I had to understand that they would fully take over responsibility for my case. The local doctors he recommended have been very good but do not have particular expertise in cholangiocarcinoma. Once or twice, it was necessary that they consult with Baltimore, which they did by email. Subsequently at one point I felt my case should be reviewed by an specialist, and I made an appointment with a doctor in Baltimore.
If you are considering a satellite or affiliated hospital of a major cancer center, it is essential with a rare cancer to verify that there is expertise where you are being seen particularly for the diagnosis, establishment of a treatment plan and monitoring. It may be that this can only be done at the mothership if that is where the expertise resides. Once the treatment course of action is settled, it may be possible to shift some parts of the treatment to a close-by provider, but be sure you understand what the roles and responsibilities will be going forward.
Good luck as you search out a good hospital and doctors.
Welcome to our community.
Interesting question. I referred it back to Foundation colleagues, and looking at the database used for the specialist map (posted on the Cholangiocarcinoma Foundation website), it appears that MDAnderson might have the highest volume of cholangiocarcinoma patients inferring from the data sources and definitions inherent in this particular dataset. Some other hospitals also showing a high volume in this dataset are Memorial Sloan Kettering, Cleveland Clinic, University of Michigan, Moffat, Johns Hopkins and Barnes Jewish. The specialist map can be consulted for a fuller list of high-volume centers for cholangiocarcinoma.
It is possible that other data sources might show somewhat different results depending on what exactly is being counted.
Here is the link for the specialist map:
Regards, MaryMarch 28, 2019 at 9:53 am in reply to: Sister-in-law recently diagnosed – Ontario, Canada #98366
Welcome to our community. I am sorry to learn of your sister-in-law’s diagnosis and that it has been hard to seek a referral with Dr. McGilvray.
While Canada’s healthcare system operates differently than ours in the U.S., one feature regrettably common to all healthcare systems is they can be mired in paperwork. My own conclusion after having to deal with this and other bureaucracies is that you cannot fully depend on paperwork (referrals, test results, appointments, etc.) arriving at its needed destination, and for really important stuff you need to track paperwork – politely but firmly – from place to place as documentation travels through the system. And be sure you are getting copies.
You may have already done this, but my suggestion would be to make sure the referral was actually sent from your SIL’s doctor, and see if she can have a copy. If that can be verified, check that it was received and deemed complete. If it is with the surgeon, hopefully the doctor’s staff can advise you over the phone of the process and when you might hear something. I always ask when I should call again to check. Some hospitals routinely send cancer cases for a multidisciplinary review (sometimes called a tumor board), which can add time to the process as the board might meet just once every week or so.
If no one at Dr. McGilvray’s office can tell you anything, if it were me, I would suspect it might be stuck or lost somewhere and would ask the referring doctor to resend.
Our medical providers in virtually all cases do their best to support patients, but given how large these institutions can be and how much paperwork medical cases generate, sometimes despite best efforts there are delays. I suspect medical providers are generally grateful for the efforts of patients and caregivers to have additional eyes on the record keeping. For this reason, patients and caregivers should never feel they are being bothersome when asking questions if something seems amiss.
I hope your SIL receives the medical opinions quickly that are needed to start treatment. Cholangiocarcinoma is a notoriously difficult cancer to diagnose and it is not uncommon to have the diagnosis rechecked and reconsidered at various points. In my own case, the initial scans had to be read by two medical facilities, then the biopsy went through two rounds of staining because the first round was inconclusive, then the first tumor board deemed me inoperable, then another surgeon decided resection was possible. Not the best month of my life, but in the end the treatment decisions were good ones.
Please stay in touch and send any questions our way.
Regards, MaryMarch 26, 2019 at 8:16 pm in reply to: Starting Rick Simpson Oil with Grandmother – Stage 4 CC #98352
Thank you for your note and welcome to our community. I am sorry that your grandmother was diagnosed with this rare cancer, and hope that our community can support your family with information and a place to bring your questions as her care proceeds.
Medical marijuana is a topic that comes up from time to time on this board, mostly as a complementary care option for patients to ease discomfort from the cancer and treatment side effects. I have met patients who find it very helpful for easing nausea, for example. To my knowledge, there are no research studies yet involving patients that show cannabis-based treatments to be effective as a cure for cholangiocarcinoma. The usual cautions about the safety of supplements or other alternative treatments whose content is not regulated or certified by an independent professional body would apply here. From what you describe, you are investigating which products are best and gathering sound information, and I imagine it helps that medical marijuana is legal and presumably regulated where you live. I hope your grandmother finds relief from her symptoms and that the chemo is effective.
You may wish to check with your grandmother’s medical providers that any alternative treatments do not impair the effectiveness of her chemotherapy.
As you are researching treatments, please take a look at the many caregiver and patient resources on the Cholangiocarcinoma Foundation website.
If it is difficult for your grandmother’s pain to be brought under control, you may consider pushing her doctors to adjust her pain meds. Many healthcare facilities have palliative care practices that work as part of the medical team to support the patient’s quality of life; this might be another resource to call upon. From what you describe, your family is providing tremendous support and loving care for your grandmother. I hope she finds relief from the pain she is feeling and that the chemo does its job.
For readers interested in this topic, I notice the National Cancer Institute has updated its patient fact sheet. Here is the link:March 26, 2019 at 10:35 am in reply to: Starting radiations Monday 11th March with xeloda chemo #98349
I am guessing you are almost through your course of radiation. I hope all is well, not too many side effects and that the treatment brings you the hoped-for good results.
Best wishes, Mary
Thank you for the update. How did the Y90 go? Do you know the results yet?
Treatment gets tiresome, but from what you describe your doctor is doing a good job keeping after this cancer. The fact it has not spread out of the liver is good as well. While having cancer is not what anyone would wish for, there is positive news in your update and hopefully the Y90 will work its magic for you. Patients with cholangiocarcinoma do tend to move from treatment to treatment as they can lose effectiveness over time. Your doctors if they know this cancer well will always be looking ahead to plan the next round.
I am glad to hear you are feeling well during the treatment break. Take care, thankfully spring is upon us. The winter has been horrible in many parts of the country, so I am hoping we all see some sun and warmer climes in the next weeks.
Thank you for your note. I did look around as you have, and did not find any information that would shed light on the allergic-type reaction your mother is experiencing. I found just a few case reports of very rare allergic reactions to just about any element of surgery, e.g., bandaging materials, pins, anesthesia, etc., but they seem to turn up at the time of contact, not days or weeks after.
I am not aware of anything similar being reported post resection. From my own experience and what I have seen reported on the discussion board, the liver in most cases heals fairly uneventfully, and the reported post-resection issues seem to pertain other things like incisions, drains, pain relief or infections.
The itching that accompanies liver dysfunction usually relates to biliary issues, for which there would likely be other symptoms. I hope your mother’s doctors are good detectives to figure out what is going on so she gets relief from this discomfort.
Regards, MaryMarch 15, 2019 at 3:56 pm in reply to: Good morning from Italy, some advice for second opinion? #98305
I am sorry to learn that your mother is experiencing some difficulties related to treatment. From what you describe, the gem-cis cycles have not produced the results hoped for, and the doctor has suspended chemo for now to address her leg pain. It sounds like there is not good communication from the doctor since your mother seems to have been left without a clear plan forward. Has the doctor given an opinion as to whether it is time to give up on gem-cis (e.g., switch to another chemo)? Has he discussed second-line chemo options? Are there concerns that your mother cannot tolerate more chemo?
Clinical trials are an option worth looking into. Some trials require the patient to have first tried a standard-of-care treatment, and some require patients to have a wash-out period (no treatment) for a specified number of weeks prior to starting. Usually there is contact information given for clinical trials, so you could call and see if the trials you identified would be possibilities for your mother.
It seems from your description, the most important next effort is to push hard that the doctor gives clear information to guide your mother’s next steps. Is the doctor expert with this rare cancer? If he is, then he should be giving more information on how he sees your mother’s treatment proceeding. If not, can your mother be referred to a doctor more specialized in cholangiocarcinoma?
I hope your mother’s pain is reduced and she can proceed with treatment. Let us know how she is doing and if you get clearer advice from her doctor.