Rock_Robster wrote:Hey Alex,
Sorry to hear about the latest mood there. If it’s any consolation, that’s almost exactly the attitude I experienced too as a stage IV patient in a European public health system. I know it’s hard not to let it get you down, but just hang onto the fact that he’s currently fit and well, and has a lot of strength to keep up this fight on multiple fronts.
Just so I understand, I think it sounds like your options (broadly) are as below. Does this look right?
1. A FOLFOX or FOLFIRI rechallenge. If I recall correctly he didn’t progress on FOLFIRI, but stopped for a chemo break and to go get opinions in the US. So it could still be an effective treatment for him. Similarly FOLFOX didn’t have radiological progression, but the increasing CEA was a concern.
2. Organ targeted treatment. The most promising here sounds like HAI, perhaps with something else for the lungs (TACE?). I don’t know how MSK feel about doing HAI with the degree of lung mets at present, but I guess you’re working to find that out. HAI is usually given along with systemic chemo (FOLFIRI, I believe), so this in effect picks up #1 above as well.
3. Assuming chemoresistance to FOLFOX/IRI as the oncologist is suggesting, and move to next line of chemo. Here this would normally be Stivarga (regorafenib) or Lonsurf, although I understand the results on average are not as impressive as the first/second line chemos (though some people seem to do well on them).
4. Pursue clinical trials - which given his current presentation the preference may be for an immunotherapy trial? This could involve combining a PD-1 inhibitor (like Keytruda or Opdivo) with another drug (such as regorafenib, pixatimod, etc.) to try to elicit a systemic immune response against an MSS tumour; or possibly one of the more novel approaches like CAR-T or TIL. I suspect this might mean looking abroad again; I know the NIH in DC does take international patients for some trials.
Given the current uncertainties, you may need to work a few of these in parallel. I guess the ideal now would be a combination of #1 and #2, for which you’re waiting to hear back from MSK on. #4 is something you might want to work yourselves at the same time. In the short term, I would personally be preferring to continue one of the chemos that has worked (ie #1) before progressing to #3, but I guess that’s a personal choice.
Thank you Rob!
Yeah the general tone here is so depressing. Frustrating since I really think the patient's mental state is SO important. Jesper could've easily given up by now and been declining, but he's as optimistic as ever and still goes to the gym almost every day and makes sure to eat healthily and take care of himself. But I imagine most people would have been quite depressed by the tone of our doctors. I agree with your points. I don't think they would give him an HAI pump at this point, due to the number of lung mets. I think it would be more likely after some FOLFIRI, once his lungs are stable again.
Stivarga and Lonsurf are not available here, unfortunately. That's the problem with socialized medicine - the approved, conventional treatments are free, but anything slightly out of the ordinary you have to pay full price for and it's hard to get your hands on. Our oncologist wants to give Jesper Lonsurf and has applied for it, but he says it has never been approved before. (Some council has to review his case and approve it, due to the high cost) Denmark is apparently the only country in Europe where it's not approved as third line chemo.
So it seems like FOLFIRI is the best option at the moment. (As well as possibly TACE, but Jesper wants to do systemic first).
I'm looking into clinical trials at the moment but it's a whole new world to get into. Looking at Regonivo trials but the results don't seem suuuuper promising so far. Jesper is scheduled for a liver biopsy on Friday and once we have the results we'll know more - things such as tumor mutational burden and HER2 expression may be significant.
Thanks for taking the time to advise me so thoroughly! I really appreciate it, and I totally agree with more FOLFIRI. I don't see why we should assume it won't work after it did such a great job last time.
Oh also! We did hear back from MSK finally. So we just need to figure out how to fit it in time-wise. I want to get him started on something, since he's been off treatment for almost a month and it's stressing me out!! But I'll be happy to hear their input and any clinical trials that they may offer. Honestly if something sounds great we may just relocate for a while. We have lots of friends in the NY area and I can work from anywhere.