Has anyone been treated using targeted chemo Encorafenib and Binimetinib for metastasised melanoma and if so, have you noticed symptoms of when the treatment stopped working?
background:
So my dads melanoma came back in December 2022 in lymph nodes near his chest: after an operation on jan 9th 2023 the lymph nodes were removed, fluid that was leaking from the operation site caused a build up around his lungs, compressing them and squeezing them, over two thirds of his lungs were being crushed, this led to him being hospitalised in feb (23.2.23), where he was repeatedly drained. We were told this wasn’t anything to do with cancer, he had a ct scan but oncology never let us know the results, nor did hospital staff- all the time dad was getting worse- couldn’t breath properly, could no longer walk ( my dad was a fit 58 year old who cycled to work even a day before his op). My mum rang our GP up who told her the ct scan showed tumours in his lungs- he was shocked the hospital and oncology hadn’t told us. When we rang oncology they were irate over our gp telling us, and denied it was cancer, saying it was likely pneumonia. The head consultant on the ward in Leicester glenfield told us it the ct scan showed a touch of pneumonia but he couldn’t be sure. Again dad was getting worse daily, 5 days before dads in person meeting with oncology, he was discharged from hospital on March 3rd- dad at this point couldn’t walk or go to the bathroom etc. He couldn’t speak, he could barely eat. When we got to oncology on March 8th - dad was in a wheel chair and continually coughing, we found out that after the operation, the fluid had spread the melanoma into the plural lining of the lungs, the lungs themselves, intestine, clavicle and more. We were showed the ct scan, almost all of his lungs were filled with tumours. Dad was unable to walk and given 2 weeks to live. He started targeted chemo the next day, it literally brought him back from going through deaths door. We were told if it did work it’s between 6-12 months and that it won’t kill the cancer completely. The cancer in his organs has been suppressed but it spread into his bones.
I’m just wondering if anyone has had experience with metastatic melanoma, and treatment using targeted chemo - Encorafenib and Binimetinib?
Dad has responded really really well, but is now having bad chest pains. His last ct scan was November.
Seeing my dad so mistreated last year when in hospital and how Leicester glenfield and the oncology nurses were so angered by our gp telling us about the ct, then saying it was pneumonia to us has resulted in a lack of trust. The cancer had spread so fast from his operation and he went from being a fit man to dying within weeks I’m worried his chest pain is a sign of treatment not working- which we were told other treatments could be tried if so. I want to push for anything that could give my dad more time- he went from a stage 3 melanoma diagnosis in December 2022 to a terminal stage IV at the start of March 2023.
dad is in oncology tomorrow, so we will be asking questions but any advice is welcome.
