My husband has advanced localised metastatic cholangiocarcinoma and has been successful for the use of pemigatinib. We are waiting to have his eyes tested due to side effects but really concerned as 3 tumours 3,5cms, 2.5cms and 1.5cms( alongside the 2 stable tumours he already had) . These new ones developed in 3 months as last Chrsities visit everything was stable so it came as a bit of a shock as he has been so well.
Has any one else has this treatment and any feedback - i had done a lot of reading so aware that that only 50% respond and the life exectancy so trying to get our heads round it all. Hes only 57 and we have already had one prognosis of 12 months which he has outlived and been so well and we know its incurable aggressive and rare but desperate for any advice.
Tina xxx
Thank you and I hope all goes well for you too - he did 3 months oral chemo then 6 months cisgem finished in Dec 2021 so we have had a goid 10 months. Fingers crossed but it just feels last chance saloon.
I will go onto Facebook and look for the group
