Stage 4 patient
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Hi
Me again. I live in Spain and I’m very fortunate that the Spanish Health Service is well known to be excellent .So I have faith in the medics here. They are sending me to a top cancer hospital in Barcelona for trails soon.
I hope you are having a reasonable week Hannah.
Regards
Hi
Thanks. I am now going to partake in trials. All that info is very useful. And I’m prepared to travel.
Sooo grateful to be on this site with you all.
Hi Hesw,
It is good to hear from you. Our community is always a safe place to express your concerns, ask questions and connect with others who are walking the same path.
Like Hannah who answered earlier, I am wondering if you had genomic profiling done to see if your cancer has mutations for which there are available treatments, including in clinical trials. For some mutations found in cholangiocarcinoma, there are treatments that are promising. In other cases, our patients are found to have mutations that are more commonly found in other cancers, and treatments used for those cancers may have benefit. If you have not been tested for mutations, this is something to ask your doctors about.
Because our cancer is rare, it is the case that many treatment options are going to come through clinical trials. I agree that this is something for you to consider. Trial participation offers potential benefits for our patients, as Hannah notes. But I am hoping that first you see results from your current treatment.
Cancer is tough, and it can be discouraging to deal with the many treatment ups and downs. You had some positive outcomes from the second chemo tried, and hopefully the new treatment can stabilize your cancer further. If the cancer or chemo are causing pain or adverse side effects, be sure to push your doctors to address them so you feel as well as possible while you are receiving treatment.
Take care, please stay in touch,
Regards, Mary
Hi there. So sorry to hear about your diagnosis and the rocky treatment journey you’ve experienced so far, but a warm welcome to our community. Hopefully you’ll find support and information here. As someone who has lurked quite a lot on this board, I highly recommend using the search function to hunt back through old postings and see what other people’s experiences might have been (this would perhaps be useful for your question about the use of cannabis oil–try using a variety of different keywords and see what comes up).
Others may have other thoughts to contribute, but for now I would ask whether your doctors have performed genetic testing yet on your tumor. You may learn through this test that there are other treatments available that target your tumor’s specific characteristics.
As far as clinical trials go, I would encourage you to explore the possibility! Before my mother was diagnosed, I imagined the clinical trials were a sort of “last refuge/hail mary” type resort for people without any other options. That is certainly not the case. Clinical trials are carefully structured to ensure that enrolled patients get the highest quality of care. In many cases, they may even get more attention than they otherwise would. Considering that there are a number of new kinds of treatments currently in the pipes, clinical trials are an excellent way to gain access to drugs that might otherwise take years to arrive on the market. Even when an enrolled patient is randomly assigned to the “control” group, most clinical trials still ensure that the patient receives an appropriate “standard of care” based on what that patient would otherwise expect to receive outside of the trial. My mom was one of those people enrolled in the control wing of a trial nearly 3 years ago, and we (and she!) are all very glad that she had the opportunity because it opened up new treatment possibilities for her.
I am not sure where you are receiving treatment, but it is likely that you’ll want to reach out to one of the major cancer centers (there is a a helpful list available elsewhere on this site) for a second opinion from doctors who are familiar with this rare cancer. Most community hospitals and even many larger medical centers serving a wider area are not up to this task.
I wish you the very best!
HannahHello there you guys!
I hope things are looking hopeful this week.
Hi.I ve stage 4 intrahepatic cancer .
I was diagnosed in November and since the the hospital has tried 2 chemo types.
1st Gem/ Uselss. M cancers grew.
2nd Folfox – shrank large tumor by 2cm but satélites grown by2cm
Im now on Fluraloxchlorcil
Recently someone said, not doctor, if the 3rd chemo treatment doesn’t work . By all means do clinical trials but it’s probably best to consider that there’s no more they can do and that it might be an idea to give up totally and basically let myself die ( Saidin kinder words)
Please answer . I feel scared
Thanks
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