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Hi Sangram,
Thank you for your note. When a patient or caregiver posts an update, this is so helpful for others reading this board. With a rare cancer, it can be hard to find information, so every post on this board is highly appreciated.
Your father has been fortunate to have good care from the family through diet, exercise and rest. The dietary improvements, from what you describe, seem to have benefited his quality of life. I hope the news from the test results is optimistic. If not, please be sure to ask your father’s doctors to give you advice on the care he should be having and how to keep him comfortable.
It is a hard experience when a beloved family struggles with serious illness. Please take care of yourself and know the thoughts of our community are with you.
Regards, Mary
Hi Billy,
Thank you for posting an update, and it was great to hear your wife has had a year without treatment. The latest development of a possible recurrence is not the best news, and it seems hard to find information when a rare event (in this case, a suspicious lymph node distant from the original cancer) happens with a rare cancer. Since there are many reasons a lymph node can be swollen, hopefully further investigation will determine the cause is a benign one.
My impression from patient case studies is that a recurrence in one lymph node may be treated systemically with chemo, or locally with surgery or radiation. The doctor’s judgment on which treatment seems to be based on the lymph node’s location as well as views on whether the recurrence is confined to the one location or if it suggests a process where the cancer is spreading. As with round one of cholangiocarcinoma, it seems important to get a surgical opinion and maybe to consult a radiologist if radiation is a possibility.
Your question about repeating a previous chemo combination is interesting. Hopefully other board members will chime in on this one.
Take care, regards, Mary
Hi Betti,
It must be so hard to have your father far away at this difficult time. I am sorry he is not feeling well.
Chemo can certainly make a patient feel foggy, but what you are describing seems more severe. There have been a few cases on the discussion board of cholangiocarcinoma patients with advanced disease reported to have symptoms similar to dementia. Possible explanations that would be serious matters for doctors to look into have included high ammonia levels in the blood and a progression toward liver failure. The cause for dementia-like symptoms could possibly also be unrelated to cancer, or as you mention, depression and antidepressants.
It is certainly good news that the cancer seems to have stabilized, and from what you describe, your father has a caring doctor going the extra mile to treat the cancer and preserve your father’s quality of life.
Immunotherapy is very new, so we don’t yet have a lot of patients and caregivers reporting on side effects. If you know the name of the immunotherapy drug, you can internet search it and see if there is more information. I know in a very general sense the side effects for immunotherapy are perceived as milder than with chemo, but patients are carefully monitored to be sure their immune systems don’t go into overdrive.
Sending prayers your way that your father is feeling better, and is helped by the immunotherapy. Please take care of yourself during this difficult time.
Regards, Mary
Hi Johny,
I am sorry to hear that your mother is feeling weak while having chemo. I am not a doctor so cannot dispense medical advice, but can make some observations from what I know of patient experiences.
With cholangiocarcinoma, while we all hope for shrinkage of the tumors while on chemo, stable disease (no growth or spreading) is a positive result as long as the chemo itself is tolerated by the patient. If there is progression of the cancer or if the side effects cannot be managed in a way that preserves quality of life for the patient, then doctors may recommend a change in treatment.
Similar to what you describe, we have had some reports on the discussion board of older patients whose doctors recommended switching to a single agent chemo, in order to continue chemo but with fewer side effects. One chemo in pill form that may be recommended for cholangiocarcinoma is capecitabine (xeloda). Is that the chemo your mother’s doctor discussed with her? An advantage of chemo in pill form is the patient can receive chemo at home without the exertion that comes from having to go to a hospital or infusion center.
In the U.S., alternatives to chemo for cholangiocarcinoma that has spread outside the liver tend to involve clinical trials, where promising newer treatments are being tried with patients. You could consider looking at clinicaltrials.gov which has information on trials worldwide to see if there are any trials for which your mother might qualify in your area. You can search for “cholangiocarcinoma,” “liver cancer,” “biliary cancer,” and “solid tumor.”
I hope your mother feels better and that her treatment path going forward keeps the cancer at bay. Your support and concern for her health and well-being are so valuable and comforting for your mother as she pursues treatment.
Regards, Mary
Adding a link for India’s clinical trials registry website:
http://ctri.nic.in/Clinicaltrials/
When you go to this site, if it asks whether to block or allow a pop-up, pick “block.” Use the keyword search function on the left-hand side to hunt for trials.
Hi Taxman,
Your question is a timely one. I had been recently looking at the medical journal websites wanting to update information on patient access programs, and discovered that some programs I was aware of seem to have been discontinued.
Here are some things I do if wanting to look at an article that is not open access and for which the journal website has no patient access program:
1. Internet search the title. Some articles circulate in various forms both limited and open access.
2. Then click on “images” on the search menu. Sometimes this will let you look at the charts and graphs from the article even if you cannot read the article itself. Most articles have the important info summarized in the charts and graphs, so this may tell you nearly as much as the full article. Also, sometimes the medical journal page with the abstract will also allow you to look at tables, graphs and attachments, even if the article itself is not accessible.
3. Look at the different ways to buy the article. Some journals offer a “read only” version that expires after a few days that can be just a few dollars. I have only bought one article so far — it cost me $8 but I could not download it and the access expired after three days. I took a lot of notes from the article while I had access.
4. If the study is about a specific treatment, e.g., a new drug, internet-search the drug name. I find good information on cholangiocarcinoma treatments on investor websites. Companies developing new drugs raise funding in the market or report out to shareholders, and they publish information on how their products in development are doing.
5. Check to see if your library or employer carries medical journal subscriptions. The latter might work if you have a job in the health field or in a big government agency that operates an internal on-line library.
6. Your doctor may not have the time or willingness, but if a medical journal article seems crucial to making a treatment decision, you could ask his or her help in accessing a copy.
Having a rare cancer forces patients and caregivers to become researchers, doesn’t it?
Regards, Mary
Hi Jonathan,
Welcome to our community, but I am sorry that you have been diagnosed with our rare cancer. It is positive you were moved into treatment quickly, and that you are at an experienced major cancer center. Hopefully gem-cis will do its job for you.
Were you able to have genomic testing? Quite a few cholangiocarcinoma patients have genomic defects for which there are targeted treatments available through clinical trials. This cancer is not good news, but on the positive side, the science is rapidly evolving and each year there are more treatment options available.
Please keep us posted on how you are doing, and send any questions our way. If you use the discussion board search engine, you can find other patients’ stories about chemo and other experiences that may be helpful to read.
Regards, Mary
Hi Jules,
Welcome to our community and thank you for sharing your husband’s story.
What is striking to me is how frequently cholangiocarcinoma is symptomless and discovered accidentally when doctors investigate other complaints. Your husband is beyond lucky that his cancer was found in time to have surgery. The capecitabine (xeloda) he has taken after surgery was found in a British study called BILCAP to have positive results in prolonging survival for patients post resection.
It is essential to have close surveillance after surgery because this cancer can recur, and can do so without symptoms just like the original cancer. Doctors have different approaches to follow-up but they should take patient views into account. After my surgery, I had scans every three months for two years, plus monthly CA19-9 tests and quarterly metabolic panels and CBCs. If you have the CA19-9 monthly, it is easier to see if a movement is a blip or a trend. In my own case, I had both chemo and radiation after surgery. My CA19-9 drifted slowly upward during treatment, then drifted downward after. I am now -gratefully- three years past surgery. I still have my CA19-9 checked every two months plus now two scans each year, because with this cancer, there is always risk it will come back.
My doctors did not seem to worry about small movements in the CA19-9. One said he only worried when there was a “doubling or tripling.” Hopefully, in your husband’s case this is just a blip. Fingers crossed.
Please check out all the resources for patients and caregivers on the Cholangiocarcinoma Foundation website, and keep us posted on your husband’s progress.
Regards, Mary
Hi Alena,
Welcome to our community. I am sorry to hear about your diagnosis. It sounds like you have a good current treatment plan. Your search for possible Plan B’s is a good strategy for dealing with the cancer. Having genomic testing is an important step as well, as there are treatments now being tested in clinical trials targeted to specific genomic defects. Hopefully you will have a good, long run with gem-cis before a Plan B needs to be activated.
Generally our patients report either a second chemo combo as their second line treatment, or they sign up for a clinical trial. Some patients become candidates for liver-directed therapy like SIRT. For some patients, gem-cis opens a door to possible surgery.
If you have not already done so, please look at websites such as clinicaltrials.gov to research and identify potential clinical trials. I would recommend that you pick a few that look promising and then call or write to the indicated points of contact to introduce yourself, and learn more about how to qualify and what the trial entails. This research may come in handy later on if you need to switch treatments.
Since it is that time of the year, I will also put in a shout-out for the Cholangiocarcinoma Foundation’s annual conference in late January. If you are willing to travel, this international conference is an opportunity to meet other patients, and hear presentations from leading researchers and clinicians expert in this rare cancer. There are videos from last year’s conference and info on the next conference on the Foundation website.
The UK is a major center for research on biliary tract cancers. There were some recent press releases about a new drug – Acelarin – in early testing in the UK. It is showing promising results for biliary cancers that you might want to keep an eye on.
Attached is a list of major cancer centers in the U.S. On the East Coast, patients on this board have reported being treated at Dana-Farber in Boston, MSKCC in New York City, Johns Hopkins in Baltimore, Maryland, among others. In some of the major cancer centers, you can seek a remote second opinion by sending your records electronically and paying a fee.
https://www.cancer.gov/research/nci-role/cancer-centers/
I hope this is helpful. Regards, Mary
Dear Srector,
I am so sorry that your niece is experiencing such pain. The situation you describe is heartbreaking. I wish hospice could do more and better to keep her comfortable.
As you mention, the hospital bed with a built-in commode seems a specialty item not found in the inventory of companies that rent hospital beds. There is an easy-to-find product (e.g., Amazon, some drugstores) called a “fracture bedpan” that is designed for patients in bed and immobilized with fractures. It is shallow and angled to slide under a patient who cannot move. I was wondering if this would help and if it has already been tried with your niece?
I am hoping some of our readers have ideas for you. In the interim, please be sure the hospice service provider is being pushed to solve this for your niece. The other source of help I have found to be good is the nurses in the oncology department where a patient is treated. There is often a help-line or “triage” phone number to reach a nurse, and nurses tend to be great resources to solve practical issues.
I wish I had more information on this, I will keep looking. Your niece must find great comfort in the concern and support from wonderful family members such as yourself.
Regards, Mary
Hi Mpurchis,
Welcome to our community. I hope you have had a chance to look over all the patient and caregiver resources on the Cholangiocarcinoma Foundation website.
Your question is an interesting one for which I have not seen any research numbers. The experiences of patients posting on the board are all over the map in terms of clues about how long the cholangiocarcinoma had been present before symptoms were noticed by the patient or discovered accidentally by a doctor. Some people had mystery symptoms for a few years, and for others the diagnosis came out of the blue.
In my own case, I had completed a very comprehensive four-doctor physical just four months before I was diagnosed. I had been declared to be in excellent health. After the tumor was discovered, it seemed grow a fair amount during the six weeks it took to get me into surgery. So my impression was it had come on quickly and aggressively. But then I remember some mild tightness felt in my abdomen a year earlier that came and went. Was that a first sign? I’ll probably never know.
Cholangiocarcinoma has many manifestations. Some people’s cancers strike hard, for others the cancer is lazy and takes its time.
I hope you are feeling well and having good medical care. Take care, regards, Mary
Hi Mommers,
Welcome to our community. It is very good news that your husband is able to have surgery.
Liver resection surgeries, as your husband’s doctors have described, can be complex. From what you describe, your husband’s surgical team is highly skilled. Also, prior to a major surgery, doctors will take steps to ensure the patient gets through safely. In my own case, for example, I was sent for a stress test of my heart prior to surgery. Also, the doctors performed a laparoscopic look-see of my liver to determine that the surgery was feasible just before starting the operation. My own surgeon was also a liver transplant specialist, this is not uncommon.
I am guessing the chemo pill afterwards is capecitabine. This follows a major study from Great Britain that showed benefits from capecitabine after surgery. If you look for “Bilcap” (the name of the study) on the internet, you can read about these results.
If you search “resection” on the discussion board, you can find patient and caregiver stories about their experiences.
Also, please send any questions or concerns our way.
Regards, Mary
Hi Srector60,
Welcome to our community. I am so sorry to hear about your nephew’s wife’s diagnosis and the ordeal she has been through at her young age with her metastases and treatments.
From what you described, she is now in hospice care, which suggests her treatment is focused on preserving her quality of life. One important aspect of this is that the patient is able to communicate what she needs. For example, there are different ways to treat pain, so if one is not working, an alternative should be quickly sought. Another concern I have heard among caregivers is that some hospice arrangements place a lot of responsibility on family members to administer care, so it is important to be sure that is working well and that caregivers are not left overwhelmed.
You asked about options for restarting treatment or joining a clinical trial. This is a question that is best addressed to doctors. If a patient strongly wants to pursue additional treatments despite likely side effects, that is a personal choice that his or her doctors would take into consideration. Starting hospice care where treatment is focused on quality of life can be, for some patients, a choice that can prolong survival.
You and your family are providing such heartfelt support. I hope your nephew’s wife feels better with the care she is receiving. Please stay in touch.
Regards, Mary
Dear Positivity,
I am so sorry to hear this sad news of your mother’s passing. Please accept my condolences and prayers.
Throughout your mother’s journey with this difficult cancer, you have been at her side ensuring she had every support and the best medical care possible. You could not have done more. Your generosity in sharing what you were learning each step of the way with our community here has been beneficial for other patients and caregivers.
Please take care of yourself at this difficult time. Regards, Mary
Hi Barish,
According to the press release, infigratinib is a targeted therapy for patients with the FGFR mutation. Targeted treatments are those designed to counter a patient’s specific genomic mutation that is helping to cause a cancer or make it more aggressive. Unlike other cancer treatments that are focused on the location of the cancer (e.g., bile ducts), targeted treatments are instead developed to attack specific genomic defects that may be factors in different types of cancer.
Immunotherapy drugs, by contrast, intend to boost the patient’s immune system. There are some treatments that are BOTH immunotherapy and targeted. For example, the immunotherapy drug pembrolizumab (Keytruda) is reported to be most effective for those cholangiocarcinoma patients with MSI/MMR genomic defects when used as a single agent.
These developments are new and evolving in the medical field. As patients and caregivers, it is important nonetheless to keep an eye on where the science is heading for our rare cancer.
Regards, Mary
Gavin, thanks as always for this helpful post.
I wanted to note that infigratinib is the new name for BGJ-398. A number of folks on the board participated in trials for this.
Something I have wondered but have not gotten around to looking up is where these complicated and, for me at least, hard to spell drug names come from. Not to make light of a serious topic, but some look like the Scrabble letters fell out of the bag.
UPDATE: I looked into how drugs get their names. There is a committee of various medical/pharma groups called the United States Adopted Name (USAN) Council which is responsible for assigning unique generic names to new drugs being developed for sale in the United States. Some syllables in the name tell you something about the medication. For example, according to the USAN list, “tinib” means the drug is in a class called tyrosine kinase inhibitors.
There is always something new to learn.
Regards, Mary
