Immunotherapy? DNA Testing?
November 12, 2019 at 1:24 pm #15144
Good afternoon everyone.
I was checking the AMMF website and under “treatment” sections I had seen the chemo, radiotherapy, surgery… but not Immunotherapy. Isn’t it available for cholangiocarcinoma? If it is, any idea if it would be available through NHS?
Another question (I saw someone asked it about a year ago here in the forum, but I am asking again in case more studies about it were done and now the answer would be different): is there any DNA test that could be done to predict if someone could have this terrible disease in the future? Just so relatives could be more aware of that and try to catch it in a much earlier stage.
We would ask about it for sure on next appointment but if there are already any official information about it that could be given through the forum we would appreciate.
Thank you very much
JulesNovember 13, 2019 at 9:53 am #15148
You could consider a second opinion and also possible molecular screening, to see if your husband might be eligible for a clinical trial. https://ammf.org.uk/referral-information/
We don’t think that there are currently any immunotherapies for CCA here in the UK.
There is a list of clinical trials currently open in the UK on AMMF’s website: http://ammf.org.uk/clinical-trials/
As you will see from AMMF’s list, many of the clinical trials are now those investigating targeted therapies – so your husband would need to have his tumour screened to see what mutations there are, if any, so that he could be put forward for the appropriate trial.
For your information, you might like to look at the details re screening/molecular profiling on the this site, as they explain it clearly: http://sarahcannonresearch.co.uk/molecular-profiling/personalised-medicine/
Also, there is currently no way to screen relatives etc for CCA.
I hope some of this information is helpful to you.
With kindest regards
Please note: it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.November 14, 2019 at 9:19 am #15153
Thank you, Julie
I checked the link (about molecular screening) and it was not very clear to me about how this test is done. Is it done with a sample of blood? I wonder if my husband already wasn’t through that, because he told me the oncologist said that the trial that would be suitable for him only opens in 2 months time (and if Folfox doesn’t work until then, it might be too late). His treatment is being done in one of the Specialist Cancer Centres listed in AMMF website and the link that is below the centre goes directly to a list where his doctor’s name is. All of that is being done through NHS. Under these circumstances, I guess we would need to go private to get a second opinion?
I will show this to my husband.
Thank you very much!November 14, 2019 at 11:36 am #15158
As none of us here at AMMF are medically trained it may be worth discussing the details of molecular screening with your husband’s consultant.
For more information on referrals please go to: https://ammf.org.uk/referral-information/
Please note: it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.
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