Hi newbie here,
Sorry, it’s a long one to explain the journey.
So, we’ve been on this rollercoaster ride with my lovely dad since January 2024.
It all started with Dad sending off his stool sample for one of the bi-annual health checks he does which picked up blood in his stool. He went straight for a colonoscopy which showed cancer in his bowel - much to our surprise as he was not showing any symptoms or signs of anything going on inside. Very promptly an operation was performed at Warwick hospital to remove the cancer which was all successful.
However, following the biopsy and scan, it showed liver mets - x2 2-3cm tumours which sit in the top of his liver, under his lungs and unfortunately we were told he has the Braf v600e mutation this was in the March of 2024.
Again, very quickly, his consultant started him on Folfox chemotherapy to try and control the cancer and he also referred dad to a liver specialist in Coventry to see if an operation could be performed to remove some of his liver or have a liver ablation to shrink the tumours.
However, by the time the appointment had come round at Coventry with the liver specialist, the chemo had shrunk the tumours (great news) so small it was hard for them to identify them which meant it was too risky to operate or preform a procedure due to the location of them under his lungs.
We are now in August and dad is still feeling great physically, still like nothing is happening, going on miles walks etc. However, the chemo is causing numbness in his feet and tingling/electric shocks down his body which started from his neck down. The decision was made by his consultant to remove part of the chemo which he shared would be causing the shocks as he worried these could cause dad to be paralysed but, this he also shared this is the part which would be being most effective on the tumours so the risk is the cancer may grow again or spread, which it did.
At the next set of scans in October the scan showed spread to a lymph node at the bottom of his stomach and the liver tumours had grown again. The consultant then started dad on the targeted therapy of Encorafenib (Braftovi) and cetuximab (Erbitux). He was on this until two weeks ago as the next scans showed the lymph node spread to have gone (great), but the liver has continued to grow and is bigger than when it was first identified, but they have also moved.
Now dad has been put on Folfiri chemo with the intent to shrink the liver tumours again and his consultant was going to contact the liver specialist again to see if he will operate now it has grown a moved, however he shares it is still too close to dads diaphragm
Since coming off the targeted therapy my poor dad’s face is so sore with a rash and blisters (we were warned of this happening) and I think the mental side of things are really having an impact on him, which is heartbreaking to see in itself and how it’s changed him as a person, as many of you will sadly also understand. The cancer marker blood test have a big impact on him as they did drop to 0 when he started the targeted therapy, however have risen each time and are now at 32 (to us this was a big shock, but now reading some of the threads on here I don’t know what to think lol). Also, the ups and downs of positives and negatives, awaiting scans and what they will bring, what is round the corner and how many options are left takes it’s toll on him (and us).
So, I guess my (our families) questions are, should we seek at second opinion re the liver op/procedure - if so any recommendations around the midlands, has anyone had similar experience, does anyone have any suggestions on things we could try? We are willing to do what it takes and appreciate any advice.
Also to note, on top of this he has Aortic stenosis which is condition that narrows the aortic valve opening, restricting blood flow from the heart to the body, making major operations a risk.
Thanks so much
