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Thank you for posting your mum’s story, but I am so sorry to hear that she has had a recurrence.
When cholangiocarcinoma recurs and has spread outside the liver/bile ducts, the most common treatment is chemotherapy because it is systemic and can fight cancer anywhere it has located. From what you describe, your mum has already had some chemo treatment, so you may be familiar how different chemos work. Some patients tolerate chemo without too much problem, and there are chemo regimens (e.g., gemcitabine alone or capecitabine alone) that discussion board members have reported being used with patients not able to tolerate a strong treatment. So even if you and your mum are hesitant about the idea of chemo, before deciding it might be good to hear what the oncologist thinks might be helpful as treatment.
Some of our patients are being treated with immunotherapies or targeted treatments through clinical trials, as these drugs are new and still being tested. You can look for clinical trials worldwide in the registry clinicaltrials.gov, or if you are outside of the United States, there may be a registry operated by your local public health service. In clinicaltrials.gov, each listing for a trial gives information on the trial location, the eligibility criteria, and points of contact you can call to see if the trial is a good fit. The targeted treatments are used for patients who have specific biomarkers or genomic mutations that can be treated. While immunotherapies and targeted treatments also come with side effects, for some of them, patients have reported finding the side effects to be less difficult than with chemotherapy.
Here is a link to a message the Cholangiocarcinoma Foundation has developed explaining molecular profiling to look for genomic mutations. This is a topic that you can raise with your mum’s doctors if of interest.
I hope your mum’s doctors can offer good treatment ideas that she can consider. Be sure to push for prompt attention to any pain or other discomforts she may be feeling. Please send any questions our way, and take a look at the many resources for patients and caregivers on the Cholangiocarcinoma Foundation website.
Take care, regards, Mary
It is good to hear from you, but I wish your husband had gotten better news after such lengthy and difficult treatment. I hope the pain and fatigue can be addressed so he has some relief and can feel better.
Please do not forget to take care of yourself, at the same time as you are helping your husband and having your kids back at home. I hope the next weeks and months include many happy moments as your family spends time together, and your friends drop by. You are in the thoughts and prayers of our community, and I hope you will stay in touch.
It is great to hear from you and that you have reached another amazing milestone. Congratulations!!! and thank you for sharing this good news.
Your CA 19-9 and CEA results were not what you wanted to hear after two surgeries and chemo, but please hold judgment on what this means til you see your oncologist.
Tumor marker tests are more difficult to interpret during treatment because for some patients, an effective treatment itself can cause tumor markers to initially rise before subsequently falling. (In other patients, an effective treatment can result in their reducing right away.) In my own case, after surgery I had both chemo and radiation, and my CA 19-9 more than doubled from what it was just after surgery. It drifted down afterwards.
Generally, if doctors suspect a possible recurrence, they will look for other evidence for example by ordering scans. It can take up to nine months or so after a rise in CA 19-9 for a recurrence to be visible in a scan, so it may take your doctors a little time to figure out what is going on.
Patients are usually reminded that there can be non-cancer reasons for tumor marker test results to fluctuate. I had a personal experience with this earlier this year when I had both a higher CA 19-9 and a scan finding related to colitis (essentially a bout of stomach flu). I learned that colitis is a benign factor affecting CA 19-9. My CA 19-9 has since returned to its prior level so hopefully that was the cause.
In sum, a higher CA 19-9 (or CEA) is not welcome news but the number alone does not tell us much. Your doctor will work with you to figure out the cause and then take action. Please don’t worry too much until you hear from your oncologist.
Fingers crossed your next scan brings good news. I wish your medical folks had better manners when interacting with their patients. I didn’t like hearing about the lack of courtesy. Let’s hope it was just bad days and future interactions will be more professional. if not, you should report this to someone. The lump you are perceiving in your abdomen should be carefully checked out, hopefully at your next visit this will happen. In a clinical trial, the researchers are supposed to be meticulous in monitoring what happens with patients so it was surprising to me your observation was not given more attention.
Take care, regards, Mary
The discussion board seems a little glitchy of late. If you are having trouble posting, please send a note to Rick through the form you can click on the discussion board main page. For me, switching to a different device helps. Hopefully we can get the glitches fixed.
Regards, MarySeptember 11, 2019 at 5:41 pm in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99069
It is nice to hear from you and thank you for posting an update on how your husband is doing with treatment.
Treatment side effects can sometimes be different with each cycle, and stomach problems are not uncommon. Regarding the new finding seen in the scan of the liver, with surgery and other treatments, patients do have spots and scarring that turn up on scans. Doctors monitor these in case they are or become cancer, but until something is determined to be suspicious, try not to worry. If a scan finding raises questions, doctors may send the patient for a different type of scan to get a better look, e.g., a PET scan.
I hope your husband feels better in the coming days and that his treatment continues to keep the cancer well controlled.
It is good to learn you are recovering well from your second surgery and tolerating the chemo reasonably well. I hope you continue to feel better and have good scans ahead. There always seems to be anxiety with scans, but they are a necessary part of keeping this cancer under control.
Take care, please stay in touch, Mary
The researchers associated with the trial you are interested in may be amenable to providing more explanation if you contact them again or reach out by phone.
The purpose of a trial is to test the effectiveness of a new treatment. For this reason, close attention is paid to patient selection to be sure that the statistics that come out of the trial paint a clear picture of the treatment’s outcomes for patients and document any side effects. If a patient has other health issues, there may be a determination that it would be difficult to know if an adverse outcome or side effect was due to the treatment or to the other underlying health issues. With their experience with earlier patients, they may have a sense of a patient profile at higher risk of infection. Patient selection involves careful judgment calls by doctors and researchers in charge of a clinical trial.
The message you received suggested to me that the trial doctors and researchers are concerned that the treatment might further harm your father’s weakened liver function.
I hope you can get the answers you are looking for. If you have additional medical records that would support your case, there would seem no harm to asking again about his eligibility.
Welcome to our community. Congratulations on getting through surgery with a good result.
Restarting chemo is something to address with your doctor, who may have qualms given your prior bad reaction to the xeloda. Adjuvant treatment after surgery is generally started as soon as the patient recovers as it is intended to mop up any stray cancer cells, especially cancer cells that may have been released via surgery or in conjunction with wound healing. I am not a doctor, but my understanding is adjuvant treatments risk becoming less effective the longer after the date of surgery. Typically, adjuvant treatment would start about 6-8 weeks after surgery and no later than 12 weeks after. The BILCAP clinical trial that tested the effectiveness of post-surgery xeloda, for example, accepted patients up to twelve weeks after surgery.
Since you did have some xeloda, hopefully there was benefit even though you stopped early. Your doctor can advise if any additional treatment is advisable at this time. With a clean surgery of a single tumor with no lymph node involvement, your results are positive and hopefully the October scan will bring good news.
Every cancer patient I have met, myself included, endures an anxiety freak-out when facing a scan. There are articles on some of the cancer association websites with tips on handling the anxiety. My own approach is to limit my “scanxiety” to a couple of specified days (e.g., the two days before the scan) and ban myself from worrying about it otherwise. This sometimes sort of works, at least for me.
Not getting into a clinical trial of great interest must be disappointing and frustrating.
As I understood your message, it seemed that the doctors thought your father may be at higher risk of infection due to the specifics of his stents. Infection risk would be a concern in TIL trials because the treatment involves reducing then rebuilding the patient’s immune system, as I (not a doctor) understand it. Trials choose patients carefully not only to ensure safety but also to be certain their patient group fits the characteristics that enable having statistics at the end that are valid to demonstrate effectiveness.
There are many trials for cholangiocarcinoma (and solid tumor) patients, including outside the U.S. In your search, have you found others to look into? Has your father had genomic testing to see if the new targeted treatments being tested in trials would be of potential benefit?
Regards, MaryAugust 25, 2019 at 5:48 pm in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99010
I hope that when you hear the full scan report, it confirms that the chemo is doing its job in controlling the cancer. It is common for chemo to affect blood counts, so doctors are very experienced in making adjustments along the way. Chemo might be delayed a week or dosages are adjusted or treatments such as transfusions are used. Blood counts do go up and down with treatment which is why they are so frequently tested.
Hopefully you and your husband will be given options to deal with blood clots and the possible appearance of cancer in the bones, if that is what is found. Cancer patients have a higher risk of blood clots, especially with some chemo drugs, and this is also something oncologists look out for and are experienced in addressing. If a bone met is present, radiation is often recommended as you mention.
Be sure to detail for your husband’s doctor how tired he is feeling. Apart from the side effects, the mechanics of cancer treatment are exhausting for patients (and also caregivers) and at times take over one’s life what with all the medical appointments, tests, treatments and everything else that goes with it. It can be hard to maintain a semblance of normal life during periods when the medical interactions are so frequent and you are feeling lousy. I remember a period when I was having nine medical appointments in a single week and trying to hang on to working. For many patients this calms down once the treatment stabilizes the cancer, but there will be ups and downs.
I hope the Wednesday appointment goes well. You might want to ask if you can have quicker access to scan reports. In my experience, scans are read fairly quickly after the image is taken. The hospital where my care is given puts the scan into the patient portal a day or two after the imaging, sometimes before I see the doctor. There seems to be a different approaches from one center to the next but it does not hurt to ask if there are long waits to hear results.
Take care, regards, Mary
I am sorry to hear this sad news about your beloved father. Please accept my condolences. From what you describe, he was a person of great heart and character and will be greatly missed.
Take care, regards, Mary
Thank you for this extremely helpful post with many ideas for dealing with the financial cost of cancer treatment.
I wanted to add a couple more. First, if you are in the United States, cholangiocarcinoma is a diagnosis that qualifies patients for Social Security Disability benefits on an expedited approval basis. This program is referred to as compassionate allowance, and here is a link:
Also, local organizations can help with rides to and from treatment in your area. You will have to do a little internet digging to find which organizations help in this way. In some communities, organizations affiliated with Meals on Wheels seem to offer this support, and I believe the American Cancer Society can help with rides in some communities.
Here is the link to the American Cancer Society information:
If any board members have other ideas on how to defray the high costs of cancer treatment, please add them to this thread.
Regards, MaryAugust 16, 2019 at 6:54 am in reply to: Please share your knowledge towards High bilirubin and chemo? #98983
I do not have personal experience with chemotherapy in a situation of high bilirubin. I did look through reliable medical articles to see if I could find any information. Because cholangiocarcinoma is rare, there was little information related to our cancer, so I also looked at the topic for other liver cancers and metastases.
My layperson’s appreciation of what I read is as follows: When a patient has cancer in the liver and/or bile ducts, a primary objective of treatment is to maintain or improve liver functioning. Poor liver functioning is evident through bilirubin and liver enzyme testing and presence of visible symptoms most notably jaundice. Liver function is an essential aspect of human health and this will always be taken into account for liver/bile duct cancer treatment.
Chemotherapy is used to stabilize or shrink tumors found in the liver and bile ducts, and can help to lower bilirubin and liver enzymes. The complication is that chemotherapy is a strong treatment and can itself stress the liver. I found many patient postings, for example, reporting that chemo was delayed or the dosage reduced because the patient’s bilirubin had gone up or liver enzyme levels had deteriorated. So doctors may be reluctant to offer chemotherapy to patients whose liver function is impaired.
Complicating this question further is the concern that if the liver is not functioning well, chemotherapy may not be effective because some chemos may need the liver to be relatively healthy to do their work.
There do not seem to have been any large scale clinical trials or other studies that demonstrate whether or not chemotherapy should be given to patients showing signs of a very stressed liver. There are a few case studies and small number studies, some of which show encouraging results but the patients described mostly had bilirubin that was somewhat high, not excessively high. There are studies showing which chemotherapy drugs are less likely to cause additional harm to a patient’s liver. But otherwise, it is left to individual doctors using their clinical experience to determine if chemo is warranted for a specific patient.
For cholangiocarcinoma, where the liver issues often relate to blockages in bile ducts, remedies such as inserting a stent into a blocked duct or some other form of drainage, will be tried as a means to address jaundice and reduce bilirubin levels. This may be done prior to starting chemotherapy for the reasons described above.
For any patients and caregivers facing the concern of treatment when the liver shows signs of high stress or poor functioning, the topic should be reviewed with the doctor to be sure available steps are being taken to address liver function (e.g., through stenting) and to take a careful look at whether chemotherapy is possible, which may mean looking at chemos with less potential to further harm the liver, looking at reduced doses or other means to ensure safety. It is possible that a doctor would assess that chemo under these circumstances would not be very effective and would do more harm than good. As with any other complicated medical question, a second opinion might be helpful to seek if another set of eyes would add clarity to treatment decisions.