Help and advise urgently please !!!
Hi all, once again I’ve not been on here for some time, as things have been going well for Chris, I found when I was on here I spent too much time researching all the time and not living in the moment and enjoying what we have!
I’m afraid I tend to turn to this special forum and website when things aren’t going so well and need advice, so I hope you won’t mind, but this is where I find myself once again!
Just to recap, Chris has been doing extremely well after being told he had 9-12 months!
we are now 2 1/2 years on this journey over 40 hours of surgery folFox, folfiri and a host of peritoneal mets that just will not budge!
Chris has had HIPEC with Jamie Murphy at Imperial In 2018, and this was a success and this gave us nine months disease free, until Cancer returned in October last year and sucked in his bowel in, it was touch and go and Jamie Murphy performed 12 hour life-saving operation to take out the tumour! Fast forward to now and the last eight months have been very up-and-down.
In January Chris presented with no evidence of disease post surgery, but they felt mop up folfiri, would be the way to go, he completed five rounds, but struggled on this chemotherapy with various upset stomachs, diarrhoea and sickness - Together with a rising CEA (which has never happened before!)
I queried with our team at the Marsden the CEA rising and they agreed to do various scans and in May an MRI / PET finally picked up peritoneal disease again! The chemo was stopped while they worked out a new plan, however this took some eight weeks to sort out and agree on a treatment plan and I feel during this time, is likely to be when the disease spread!
Finally on the 5th June he went back on FOLFOX treatment, after a lot of debate about his neuropathy from previously (which was minimal) it was agreed to rechallenge with this line of treatment.
All had been going well, with Chris being able to continue working throughout, both at the Fire Brigade and also running his own building firm, building extensions and doing huge landscape jobs! The CEA was dropping from 39 to 33, 25 and then at last chemo he had a slight peak back up to 33, (which the team said was likely inflammatory as he has such bad diarrhoea ) but then proceeded to go into a semi bowel obstruction a few days later!
We spent a week in St Mary’s London, where they have confirmed with a CT scan that the peri mets are tethering to the small bowel & Chris is in trouble of going into another obstruction (although he is so incredibly well, bloods are normal, and the obstruction didn’t last long, he was still able to have bowel motions and wind) it seems to have resolved itself once again.
Since being discharged he has been put on a low residue diet, he is still working on a big extension job and feels very well! However it’s now been 4 weeks since the last chemo (having a break due to the partial obstruction) and we had a call from the Oncologist last night to say they have reviewed the MRI & Pet from May with the CT at St Mary’s last week and they can see extensive peritoneal mets and have no suggested we stop FOLFOX + Cetux and proceed to Lonesurf tablets!!!!!!
Now forgive me, isn’t this an end of life treatment !!?!?!?!? That’s what we were always told, that was there for end of life - to buy some time?
We’re shocked and angry!! Why are they giving up on us? Chris is more than well and always has been this whole 2.5 years! He’s astounded the team with his mind, and his body! His bloods don’t even show he’s on chemo and he heals so well! (Cuts and nasties from work have healed incredibly - despite almost tipping me
Over the edge !! )
So what do we do now? My gut feeling is the Folfox is working it’s just not been long enough? And this was already growing ?? Or do we look to do Folfiri again with added Cetuximab , which was the teams thought process when concerned Folfox would give neuropathy!
What about drug trials; Avastin, the Beacon Trial? I’m so mad that Chris has proved he will more than take anything they throw at him, he bounces back and continues to maintain a work / home life balance for his family DESPITE the shite that is cancer ! Why are they giving up on him?!?!?
Should I request a scan at The Marsden - rather than rely on x2 scans they are possibly not comparable being from x2 different hospitals??
I emailed Mr Murphy about surgery and he said after the 12 hour surgery last time and the scar tissue he had to attempt to get through (which took 5 hours alone), it’s jusy not feasible at the moment & it could spread the cancer even more, given the weakness to the bodies immune system for surgery!!
If anyone has any advise or comments or drug / treatment ideas for me to suggest; please please come forward??? We’re on our way to Marsden now to discuss Lonesurf and we are desperate !!!
Love Sarah and Chris & our beautiful baby girls