Tagged: #genetictest #genomeprofile
December 2, 2017 at 1:10 am #96189MalepiParticipant
Many thanks for your comments. Spain is an option we are evaluating. Until then we hope the standard chemo results as much as posible.
Best regardsDecember 1, 2017 at 9:56 pm #96188bglassModerator
Welcome to our community. I hope you have been able to look through the resources on this website, particularly the information for newly diagnosed patients and their caregivers.
Healthcare systems are different from country to country, so it is hard to know if practices in one location also apply elsewhere. Many cholangiocarcinoma patients are treated first with chemotherapy, and then should chemo lose effectiveness, other therapies are considered. For some patients, this will include clinical trials or other arrangements for treatment with targeted therapies that require the patient to have undergone genomic testing. In the U.S., this may require a new biopsy or tissue from a prior biopsy if such was saved. A few patients have reported using a new technology that tests cancer cells circulating in the blood to find genomic defects. If you search “liquid biopsy” you can find more information on this option.
Foundation One is the source of genomic testing most commonly mentioned by patients on this discussion board who are treated in the U.S. It may be that there are other options for genomic testing outside the U.S.
Patients in the U.S. sometimes travel long distances to participate in clinical trials. You had mentioned there are not many treatment options in Portugal. I was wondering if it would give more options to look at trials in nearby countries. Some of the same clinical trials our folks in the U.S. are participating in seem to have sites in Spain, for example, according to the information on clinicaltrials.gov.
I hope your father is having good results from his current treatment. Please send any questions you have. The discussion board has a good search function which may also be helpful.
Take care, regards, MaryNovember 30, 2017 at 11:36 am #96179MalepiParticipant
Dear Marion and all,
My father was diagnosed with Cholangiocarcinoma stage IV in July 2017. He started chemo with gemcitabine/oxaliplatin one month later. We live in Portugal and he is being treated there. There is only a clinical trial for solid tumors including Cholangiocarcinoma and at this time nobody suggested for a genetic test.
We knew that is posible to do the FoundationOne test with the samples of the biopsy however we were advised that the samples can be lost if we want to do a new genetic test (for example before starting a specific clinical trial) and also that more validation is needed to accept FoundationOne test as routine work-up at the hospital.
Based on this I would like that someone comment and also if there is a genetic test/genome profile more valid that we should use instead?
Thanks in advance for all the help given!
March 22, 2017 at 4:42 pm #89506
- This reply was modified 3 years, 3 months ago by Malepi.
This trial also checks for somatic mutations, which are alteration in DNA that occurs after conception. Somatic mutations can occur in any of the cells of the body except the germ cells (sperm and egg) and therefore are not passed on to children. These alterations can (but do not always) cause cancer or other diseases.
https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=46586January 28, 2017 at 12:59 am #89505
The NCI-MATCH clinical trial is open at more than 1,000 sites, and about 6,000 patients will be screened http://cancer.gov/nci-match #NCIMATCHJanuary 26, 2017 at 10:49 pm #89504
SWOG Launches National Immunotherapy Clinical Trial for Rare Cancers
If they don’t have a treatment option under NCI-MATCH, or if they didn’t respond to treatment on that trial, and their rare cancer is eligible, they can enroll.October 23, 2016 at 7:17 pm #89501
googily….agree with your comments. Although the trial is to end sometime in 2017, I think that MATCH will make changes along the way. Feedback such as this from people involved in the process is of incredible importance not only to the global patient/caregiver community, but to the trial coordinators as well.
Thank you for always responding. Moderators are here to help guide conversations, but the real value of this blog lies in the value that patient/caregivers provide to us all.
MarionOctober 23, 2016 at 1:28 pm #89500
They definitely need to come up with the appropriate way to use Foundation One results–Bill got his Foundation results back a month before starting to apply to MATCH and now still has to wait for the MATCH folks to redo the testing themselves. They hope they can get the testing done in about two weeks, but there was also time spent getting the sample back from Foundation One, and then a billing/insurance snafu with the MATCH folks that delayed things as well.October 23, 2016 at 5:22 am #89483
Here is a brief update on the NCI MATCH INTERIM ANALYSES
Physicians are encouraged to select only those patients able to tolerate being off treatment for up to six weeks
This is a nationwide trial that is not only available at large cancer centers, but it is available LOCALLY at COMMUNITY HOSPITALS. In fact, the majority of patients are enrolled in the local community hospitals. MATCH is hoping to increase participation of cancer centers currently performing currently performing tumor testing in people with advanced cancer. Additionally, there are plans for collaboration with commercial sequencing labs to notify physicians of relevant NCI-MATCH treatment arms for their patients who have matching mutations.
To conduct clinical trials for the treatment of cancer in a consistent manner across many participating hospitals, cancer centers, and clinics requires the use of standard criteria for measuring how the disease impacts a patient’s daily living abilities (known to physicians and researchers as a patient’s performance status). The ECOG Scale of Performance Status is one such measurement. It describes a patient’s level of functioning in terms of their ability to care for themselves, daily activity, and physical ability (walking, working, etc.).
In order to be considered for enrollment, patients have to have a good health status as defined in ECOG.
Patients must be fully active, able to carry on all pre-disease performance with out restriction (ECOG status 0)
patients may be restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work (ECOG performance status 1)
The NCI MATCH enrollment status, as of October 16, 2016, consists of 230 patients of which 47 are cholangiocarcinoma patients, representing 2.7% of all patients.
Recent changes to the trial include allowance of tumor tissue obtained 6 months prior to registration. This is development is particularly beneficial to our patients, as tumor tissue can be difficult to retrieve and often times patients had to undergo an additional biopsy in order to register for this trial.
As of now, the trial mandates needle aspiration as well. The latter will be a lesser problem, as the majority of cholangiocarcinoma patients have this procedure done for diagnostic purpose.
Resources for NCI MATCH
Main webpages: cancer.gov/nci-match
For e-mail inquiries contact: email@example.comOctober 18, 2016 at 12:47 am #89485
The MATCH trial is accompanied by another study examining whether educating patients with cancer about genetic testing will increase their knowledge and reduce their stress levels after receiving the results of their tumor profiling tests.
What do you hope to learn from COMET?
How do you think COMET participants will react if they’re among those who don’t have a match?
What about patients who receive uncertain results or results that could affect their family members?
How will COMET benefit people in NCI-MATCH who are not matched with a treatment?
How quickly could the COMET study results change how doctors interact with their patients regarding genetic test results?
COMET is an ELSI (Ethical, Legal, and Social Implications of medical research) study. How can studies of this type broaden the impact and effectiveness of treatment trials?
The answers are found here:
https://www.cancer.gov/news-events/cancer-currents-blog/2016/comet-study?cid=eb_govdelOctober 5, 2016 at 7:20 am #89486
Here is the official MATCH interim analyses:
the link also allows for downloading of slide deck
MarionSeptember 30, 2016 at 9:46 pm #89487
Fingers crossed, dear gooogily.
MarionSeptember 30, 2016 at 8:08 pm #89490
Thanks, Marion. We are proceeding with paperwork to get Bill enrolled locally in MATCH’s arm for the FGFR mutation/AZD4547 drug.
We are being told that they won’t have to do a new biopsy, though they will do the testing themselves, even with a just-completed Foundation One test.
And we will be avoiding FOLFOX if at all possible before the trial. But uncertainty on the timing of the restart of enrollments is making this even more uncertain than I assume trial enrollments usually are.September 27, 2016 at 4:50 pm #89489
googily….as much as we wish it to be different, traveling to other locations for enrollment in a specific clinical trial is the norm rather than the exception. It’s inconvenient and costly as well. Eventually, the MATCH trial as well as the TAPUR study will be offered throughout the US, but at the present numerous obstacles have to be overcome.
Given your situation I think your plan is well laid out, dear googily. My only concern, which may be unwarranted, is related to the inclusion criteria for future clinical trials if indeed you resorting to FOLFOX. But, for all we know, Bill do will well with either treatment.
Good luck and tons of good wishes,
MarionSeptember 26, 2016 at 4:56 pm #89488
We were told by our oncologist today that, at least in the Johns Hopkins system and also at Georgetown University, enrollments in MATCH are currently on hold. I guess it has something to do with changes in the program that then require the hospitals to have the protocols go through their administrative approvals again?
Our plan is for Bill, with his FGFR2 mutation, to go into the AZD4547 arm. if they accept him. But if they don’t get enrollments started up again by the end of his four weeks off of chemo (he’s at two weeks right now), he will begin FOLFOX.
Marion, do you have any additional information on this?
Also, I have not found on the boards anyone who seems to have experience with this AZD drug, though it’s in Phase 2. I had hoped for BGJ398 or ARQ 087, but openings for those would require travel or Phase 1. We’re not ruling that out (especially if MATCH continues to be on hold), but of course would prefer staying close to home.
In the meantime, his liver functions continue to be normal and/or normalizing (ALP dropped again on today’s blood work). Our oncologist admitted to being as absolutely shocked as we were that gem/cis didn’t work, given how well he seemed to be responding. But that’s why the scans are the only real arbiters….
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