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It is so nice to hear from you, and so inspiring to learn you are at eight years and counting.
In my early months after diagnosis, like many, I lurked namelessly on this site, and read and read and read patient stories, including yours. The stories gave me a lot of hope, as did the comraderie of this board. Thank you for sticking with us, and please keep checking in.
Yippee! Thank you for sharing this happy news with us. Best wishes to you and your family for a joyful holiday season.
Regards, MaryDecember 21, 2017 at 8:00 pm in reply to: Companion Diagnostic Test with Foundation Medicine – Please Take a Look! #96322
Thank you for posting this information on testing. Very helpful!
Thank you for the update – hopefully moving on to Folfox will bring desired and long-lasting results. Many board members have reported good results with Folfox, with manageable side effects.
CCA treatments can be effective for a while (in best cases, a good long while) but can then taper off. Many patients go from treatment to treatment, managing CCA as a chronic disease. Our doctors should be thinking ahead and engaging us as to what the next treatment might be should the current regimen need replacing (acknowledging it can be tough to think about possible next step treatments when patients and caregivers are focused on getting through a current treatment). Are clinical trials an option if needed in the future? Can the spine lesion be addressed, e.g., with radiation?
Second opinions are commonly sought, and often necessary when dealing with a rare cancer.
Pain management is important to address early. There is some good advice posted on this board about pain management strategies. One key point is that pain management is most effective if relief strategies and medications are considered right away when pain symptoms are first beginning.
Your family has certainly had a tough year, coping with cancer treatment at the same time a major hurricane damaged your beautiful island. I hope your holiday season is peaceful and joyful.
Best wishes, Mary
I wanted to comment on the concern about cancer treatment and the risk of developing a second cancer due to that treatment. As several have noted, we were saddened when one of our board colleagues did develop a second, therapy-related cancer that seemed to stem from her chemotherapy.
Thankfully, this is a rare event. I do not recall any other reports of a therapy-related second cancer posted on this board. You can internet-search any treatment name plus second cancer and see some numbers on the risk – they will be tiny. Also, if a second cancer develops, usually this occurs some years after treatment, in these rare cases.
Our scans, our chemo, and our radiation treatments all can carry small risks of second cancers down the line. If you are concerned about such risks, this is a question to ask when discussing possible treatment. In my experience, doctors generally believe that the benefit of cancer treatments vastly outweighs such risks. Doctors are very aware of this concern – it comes up for example when considering the frequency of scans
In my own case as a patient, I have embraced every treatment offered. This is a tough cancer, and if I am fortunate enough to survive the amount of time it takes (in a small number of cases) to develop a second cancer due to treatment, that would probably be a better outcome than what would have happened with no treatment.
These are all very personal decisions each patient faces.
I am so sorry you are feeling pain in your back.
Have your recent scans shown any spread of the CCA in that area? In any case, I would encourage that you report this pain to your oncologist so the cause can be identified. At the same time, it is important to be sure you are getting good pain management advice from your doctors. If pain issues are left unaddressed, they can be harder to treat later on.
Cancer forces us to become hypochondriacs – symptoms we might otherwise ignore do need to be checked out with our medical providers so nothing gets out of hand. No one will mind that you are asking.
Take care, regards, Mary
Welcome to our discussion board. The Cholangiocarcinoma Foundation website contains a wealth of information for patients and caregivers, so I hope you will take a look around at the various resources.
Most everyone feels blindsided or overwhelmed by this diagnosis. Cholangio – what? Many are diagnosed with few prior symptoms, and by doctors who may have seen few or zero prior patients, as the cancer is that rare. Doctors who are not specialists may not be fully aware of treatment options. If possible, patients should try to be seen by an oncologist who has experience with cholangiocarcinoma, for example, in a major cancer center.
Survival statistics are often misunderstood. It is best not to focus on them, but since a number is out there, here is one way to think about it. The prognoses are usually given as medians, which mean that half will live longer and some will live much longer than the number of months or years mentioned. Think about reasons why you could be in the longer half – you are otherwise in good health, or you are getting good treatment, or you are determined and have a good family support system. The 12 months mentioned to you definitely is not an expiration date stamped on your forehead.
The decision to pursue chemo is a very personal one. Many cholangiocarcinoma patients do have good results with minimal or manageable side effects. This discussion board has quite a few patient stories you can look through to see a variety of experiences with chemo.
Please let us know how you are doing and send us any questions you have. This is a welcoming community with lots of experience and support to offer.
Thank you for sharing your wonderful news. I hope your next round of treatment is uneventful and your next scan is equally positive. What a great holiday blessing for you and your family.
Regards, MaryDecember 1, 2017 at 9:56 pm in reply to: NCI-Molecular Analysis for Therapy Choice (NCI-MATCH) Trial #96188
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, Mary
I looked for information on your question, and did find recommendations in favor of waiting a few weeks or a month after chemotherapy ends before performing a PET scan, but nothing specific to CCA. Sources noted the possibility of false negatives because chemo can repress tumor metabolic activity and the possibility of false positives due to inflammation from chemo, but I don’t know if either would be expected with CCA.
Different types of scans yield different information. A question that crossed my mind when I read your report of your MIL’s positive results was whether she could now be reconsidered for surgery. Usually a CT or MRI would be used for that purpose as they better define the features of the tumors.
Hopefully other board members can chime in on this topic, regarding any timing issues with PET scans they have discussed with their doctors.
Thanks for passing along this great news about your MIL’s awesome response to treatment.
You are right – since she is pursuing both the standard chemo plus alternative treatment, it is hard to know for sure if the results were due to one or the other, or the combination, or some other unknown factor. Some people do have this degree of positive response to the chemo.
I hope her next visit with her University of Michigan medical team presents a good treatment plan going forward.
Thank you for letting us know how you are doing. It is great to hear that despite some bumps in the road, you are moving forward with treatments. Fingers crossed the new FGFR inhibitor will give you another long run of stable health.
Your lengthy response to Votrient (pazopanib) was quite a good result. I don’t recall anyone previously posting that they are being treated with lenvatinib (do I have the generic name correct?). Please let us know how things go with this treatment.
Brain mets are not fun. The medical literature says they are “extremely rare” for cholangiocarcinoma but on this board, patients have reported them. My understanding is they can be more of a risk (still a slight risk) for longer-term survivors. I wonder about the surveillance aspect of this. We get periodically scanned from chest to pelvis but I don’t think doctors systematically look out for brain mets unless there are symptoms.
I hope you and your family enjoyed the Thanksgiving weekend and have great plans for the upcoming holiday season.
Take care, regards, Mary
Thank you for sharing this update – and the happy news of your husband’s two year anniversary. An uplifting milestone and testament to both of your determination to push for good care and to keep moving forward. Your story will bring much hope to many on the discussion board. Chemotherapy is a tough road, but as you describe, it can bring substantial benefit.
I am a fan of your husband’s blog and encourage board readers to check out the link.
It is good to hear from you.
Several board members participated in trials for this treatment. If you search “ARQ 087” using the board’s search function, you can find their (or caregivers’) posts, plus some additional info that Gavin has posted.
Thank you for sharing this positive news.
Wishing you and your family, and all of our discussion board community, a Happy Thanksgiving!