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Hi Brigitte,
I hope others will chime in on dealing with neuropathy.
Here are some resources I found on the board:
https://www.ons.org/practice-resources/pep/peripheral-neuropathy
https://www.cancer.net/navigating-cancer-care/side-effects/peripheral-neuropathy
Unfortunately, neuropathy can develop during chemotherapy. I was sorry to hear your oncologist had no suggestions. It might take some trial and error with the different treatment ideas to find what works for you. Karen, our nursing advisor who sometimes posts on the board, has suggested trying a topical cream with Benadryl, as one idea. Other sources mention topical creams with lidocaine or menthol. Medications are sometimes prescribed such as antidepressants. If the neuropathy is really impairing your quality of life, it may be worthwhile to consider consulting a specialist.
Regards, Mary
Hi Kim,
The news from Rich’s scans was not what you were hoping for, but it is positive he has been feeling well and that a new trial is lined up. Thank you also for the information about the additional genomic testing he is having – please let us know how that turns out.
The doctors’ concern that the new tumors may have different mutations than the earlier ones has implications for testing and treatment. There was discussion at the annual conference about how often the genomic testing should be repeated, and your posting highlights two of the factors for this question – the other one is that the tests themselves are evolving and over time are adding new mutations to look for.
I hope Rich’s washout period goes by quickly and easily.
Regards, Mary
Hi everyone,
The news about Marion’s passing is such a deep loss for our community. Like many, I benefited from Marion’s expertise and advice in my early months dealing with this cancer. Marion was relentless in seeking out the doctors, researchers, clinical trial sponsors and anyone else who knew about cholangiocarcinoma, picking their brains, and using what she learned to benefit all of us. She was passionate in bringing patient and caregiver perspectives into research discussions. I will miss her.
The Cholangiocarcinoma Foundation is collecting testimonials for a tribute on Marion’s work. A notice is posted on the Foundation’s Facebook page with instructions on how to submit input, if you would like to contribute.
Testimonials should be provided to Jordan Giles at Jordan.Giles@cholangiocarcinoma.org by Monday August 6.
Thanks and regards, Mary
Gavin,
Thank you for posting this abstract. Looking at the authorship, this appears to be an initiative by our wonderful Cholangiocarcinoma Foundation Nursing Advisory Board members.
I am wondering if there is an open access version available.
Regards, Mary
Hi Brigitte,
I am sorry you are experiencing back pain, not to mention having to go through more scans and wait for results. I hope the results are good ones. If the pain is affecting your daily activities, are the doctors helping with that?
It is good you are following up. With this cancer, we have to pay attention to what is going on with our bodies and consult our doctors when anything seems amiss.
Take care, all the best, Mary
Hi Pooh,
Welcome to our community. I am sorry to hear you were diagnosed with cholangiocarcinoma, and hope your chemotherapy treatments are doing their job without too many side effects.
Please, if you have not already done so, take a look at the many patient resources on the Foundation website.
I hope you have found medical providers with experience with our rare cancer. Upon diagnosis, given the complexity of this cancer, patient cases are often reviewed by a multidisciplinary medical team, including not just an oncologist but also a surgeon, radiologist and possibly other specialists — this sort of team review is called a tumor board in the major cancer hospitals.
Yes, the online material about cholangiocarcinoma can be daunting, but there are now more treatment options for us, with a number of new drugs being tested through clinical trials. Medical research on cancer right now seems to be evolving rapidly.
Please keep us posted on how you are doing, and if you have questions, you may be able to find other, similar experiences among colleagues here.
Regards, Mary
Hi Sangram,
Welcome to our community. I hope moving your father to a cancer unit goes well. This is news none of us wants to hear, so I understand your worries about explaining the diagnosis.
In the U.S., one of the first pieces of advice after diagnosis is to find doctors having experience with this rare cancer, which usually means a major cancer center in an urban area. Be sure to ask doctors you see if they have treated other cholangiocarcinoma patients.
Your father is just at the beginning of this road, so it is premature to be worrying over prognosis comments. Wait and see what the experts say and remember that a prognosis is like an average over many patients, so some will do better.
There is a wealth of information here and on the Cholangiocarcinoma Foundation website. If you use the search engine on the discussion board, you can find stories from other patients who have faced similar treatments or symptoms.
Please keep us posted how your father is doing.
Regards, Mary
Hi Judy,
Welcome to our community. I am so sorry to hear about Joe’s diagnosis – cholangiocarcinoma sadly can be symptomless at the beginning, and patients can be blindsided when it is discovered.
I hope you and Joe have been able to look through the patient and caregiver resources on the Cholangiocarcinoma Foundation’s website.
It sounds like your husband is in good hands with Sloan Kettering, with a trial in hand and a back-up for when you need it. The treatments through clinical trials can produce good results for many patients (shrinkage or stable disease) for a period of time, then may lose effectiveness, and a new treatment may then take over. I hope Joe gets good results from the AG-270 trial. Please keep us posted on his progress.
AG-270 is a newer trial. The INCB054828 trial has been around for awhile. There is a patient blog that describes experience with this trial – the link is http://pattysjourneyoffaith.blogspot.com and the posts on the trial start with December 2016.
Please keep the faith. Sending prayers your way that the trial does good work in keeping Joe feeling well.
Regards, Mary
Victoria,
I am sorry to hear that Patrick’s chemo regimen is taking such a toll on him, and might be starting to show signs of losing effectiveness; hopefully the next scans will paint a more optimistic picture. With this cancer, one always has to be mentally lining up possible next treatments however, so it is good you are doing so.
I looked at the research on BRCA and cholangiocarcinoma and the two institutions you have identified seem to be leading on this rare subset of CCA patients. In considering which to go with, you might also investigate the requirements they place on new patients, e.g., must there be a washout period from current treatment, do scans and tests have to be repeated, how long is the wait for an appointment.
Please keep us posted, and best wishes that Patrick’s infections calm down.
Regards, Mary
Gavin,
Thank you for posting this article.
Having a rare illness can be isolating, as there are few opportunities to meet other patients with similar experiences. It was more than a year after diagnosis that finally I met other cholangiocarcinoma patients, and it was the Cholangiocarcinoma Foundation annual conference that made that happen for me.
This discussion board is also a forum to bring folks together. The patient stories that are posted give information, suggestions and comfort to readers.
It can be hard to share health information as it feels very personal. On this board, if you wish, sharing can be done anonymously. Patients and caregivers know first-hand what it is like to go through the various tests and treatments, and these experiences enlighten us all.
Regards, Mary
Hi Dancer41,
Welcome to our community although I am sorry you had to find us.
If you haven’t already done so, please look through the many patient and caregiver resources on the Cholangiocarcinoma Foundation website. It can be hard to find good information for a diagnosis as rare as this one.
From what you write, I have the impression your husband’s cancer is confined to the liver. If this is the case, please ask the doctors about whether he is a candidate or could be a candidate for other therapies that can be used. I put a citation below about liver-directed therapies. There are patients initially deemed inoperable who may even see their tumors shrink enough with chemo treatment to subsequently be eligible for surgery.
It is important to be treated at an institution with experience with this rare cancer, usually a major cancer center. And your husband’s case should be reviewed by a multidisciplinary team – rather than relying on an oncologist to tell your husband chemo is the only option. In the major cancer centers, cases are reviewed by teams that include oncologists, liver surgeons, radiologists and other specialties – the teams are called “tumor boards.”
Few of us see this diagnosis coming, and the initial days can be frightening as you absorb the news and figure out a treatment plan. In recent years, medical treatments for cholangiocarcinoma have expanded, so patients now have more options, including a number of promising treatments available through clinical trials.
Please send us your questions – there is a wealth of experience within this community here to help.
Here is the citation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5411273/
Take care, regards, Mary
Randi,
It is so good to hear from you. Thank you for sharing this article. With more knowledge about what causes this cancer, people may have options such as lifestyle choices or early testing to help steer clear of it. So many of us have no known risk factors and are blindsided by the diagnosis.
Regards, Mary
Hi April,
Welcome to our community. I am sorry to hear about your mother’s diagnosis — no matter what the patient’s age, no one wants to receive this sort of news.
There have been a number of research studies on the experience of elderly patients with liver resection surgery, and the good news is it is generally safe, assuming the patient is healthy enough to undertake the procedure. Here is a link to a recent study.
https://www.ncbi.nlm.nih.gov/pubmed/29135100
In the case of chemotherapy, the question can be more complicated and depends on the health status of the patient. Your mother’s doctors will look at her overall health and functioning, for example, does she have conditions such as heart or kidney ailments or anemia. They will look at the medications she already takes, which might negatively interact with chemo. Many older patients are able to tolerate chemotherapy, but some are not.
As you will see in the patient stories posted on this board, there is a lot of variation on how patients fare under treatment. A good number will do better than the statistics might suggest. In some patients, this cancer can be slow-moving even without treatment. And research is advancing quickly with many new treatments emerging or on the horizon. So there is always hope that a patient will surpass any prognosis a doctor may offer. It sounds like your mother is being seen by doctors who are expert in this rare cancer, which is a factor in her favor.
Please stay in touch and let us know how your mother is doing.
Regards, Mary
Hi Lili,
I hope the appointment at MSK goes well.
Here is an American Cancer Society link on choosing a clinical trial, for readers looking into this topic. The clinicaltrials.gov website has a similar page. https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/picking-a-clinical-trial.html
Information on the results of an on-going trial is often not publicly available. If a trial is Phase 2 or 3, then there may be published reports on the results from earlier phases. Sometimes early results are described in company reports related to its investors. If you search the name of the drug, the name of the company and what is being treated (e.g., cholangiocarcinoma or solid tumors), you can sometimes find this sort of report. Medical professionals may have some anecdotal knowledge of how trials are going, if they have contact with enrolled patients or the researchers.
Early numbers may not be all that helpful. If the trial has just a few patients enrolled, or if it is early in the study time-line, then information would extremely preliminary and not likely very revealing. As with any treatment, there is regretfully no sure way to know in advance if a specific patient will have a positive response.
What you have been working on is a good approach – namely compiling a list of possible studies, speaking to the researchers listed as points of contact, and consulting with your father’s doctors. In considering which trials may be promising in your father’s case, you can look at what is known about response rates and the severity of side effects (for early phase trials, the information may be very preliminary or even not yet available). Other factors are important as well, such as whether the trial is close to home, how demanding is the trial (e.g., how frequently will the patient have to report to the trial site, what testing is required and how invasive is it), and how much financial cost will there be.
While a doctor might encourage involvement at a trial at the same institution, this may simply reflect a higher degree of comfort with the institution and researchers that are better known. If other trials look more interesting to you, your father’s doctor should be able to give an opinion on whether a trial is a good option, and hopefully could guide you on how to pursue enrollment in any appropriate trials you and your father feel strongly about.
Let us know how it goes at MSK – best wishes that your father’s doctors will have a good treatment plan for him.
Regards, Mary
Hi Katemarykate,
Not being a scientist or doctor, I struggle to understand the details of the new treatments. My layman’s understanding is there are two classes of new treatments that overlap. Targeted treatments as their name suggests go after specific genomic defects that cause or influence the course of a cancer. Immunotherapy builds the body’s immune defenses to fight cancer. They overlap when there is a genomic defect present that limits the effectiveness of the immmune system. For example, the new checkpoint inhibitor drugs such as Pembrolizumab (Keytruda) act upon a genomic defect related to the immune system called micro satellite instability.
Immunotherapy as a class of treatments does not necessarily need there to be an underlying genomic defect to target. A number of the trials available now are combining immunotherapy treatments with traditional chemotherapy out of a belief that they may boost chemo’s effectiveness.
In other words, even if genomic testing does not show a targetable defect, there may still be immunotherapy options to try, for example, through participation in a clinical trial.
Regards, Mary
