New to the Stage IV club

[Nor Cal]

Hi folks -

I've gotten plenty of inspiration and information from these boards since my diagnoses last June, so I figured I would share my story and see if anyone has any advice.

Diagnosed June 2020 in the US, stage IV, w liver mets. Male, age 50. Left lobe pretty much completely taken over by tumor. Right lobe "littered with tumors" as my oncologist said. Right-sided colon tumor. BRAF mutation.

July-Nov 8 cycles FOLFOXIRI (plus Avastin cycles 2-6).
Left lobe tumor shrank from 14.4X6.5 (cm) to 7.6x4.1
Largest right lobe tumor shrank from 5.9x5.3 to 3.5x2.5
CEA went from 39.5 to 2.9
Dec radioembolization on liver (right lobe).

Next step is chemoembolization on left lobe, and then either a colon resection or a return to chemo. If anyone has any insight into when non-resectable livers become resectable, I would love to hear it. Also, I hear that chemoembolization can be pretty rough, so any advice on that procedure would be appreciated.

[boxhill]

I assume that you are not MSI, despite having a right-sided tumor, or you would be on immunotherapy. If my some chance you haven't been tested, you should be, ASAP. Also try to find out if you have a high tumor mutation burden anyway. Pople are trying to extend the therapy to people who are not MSI-I.

Sounds to me as if the HAI pump is most like to get you to resectable. There are several people here who have followed that path. MSK in NYC and Dr. Kemeny is most likely the number 1 site for this. City of Hope in California probably #2.

[Nor Cal]

Thanks for the reply, boxhill. Not sure if I've been tested for MSI, but will check with oncologist. I'll also ask my team about the HAI pump.

[boxhill]

I just looked at my last post, and I realized I made an error. I meant to say just MSI, not MSI-I.

Just to be confusing, there are in fact several gradations of MSI, including MSI-I[ntermediate] and MSI-H[igh]. Both are degrees of M[icro] S[atellite] I[nstability]. As far as responding to immunotherapy, the higher the instability, the better, because a high mutation rate makes the cancer cells easier for the immune system to identify.

BTW, putting your details in your signature would make it easier for people to respond constructively to your posts.

[Rock_Robster]

Welcome, and some great advice above. Also excellent that they started you on FOLFOXIRI. Given the BRAF mutation I’d also suggest making sure you’re in a place that can get you access to the latest targeted BRAF protocols, eg BEACON, and also perhaps some of the newer trials like BREAKWATER. Also it may be helpful to have access to more modern monitoring techniques such as liquid biopsy. In short - a major cancer centre. Best of luck.

[Green Tea]

...
Next step is chemoembolization on left lobe, and then either a colon resection or a return to chemo. If anyone has any insight into when non-resectable livers become resectable, I would love to hear it. Also, I hear that chemoembolization can be pretty rough, so any advice on that procedure would be appreciated.

DEBIRI
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=49837&p=386670#p386670

[Nor Cal]

Thanks all, this is great. I meet with oncologist on Monday and it looks like I have 3 things to add to the discussion:
MSI
BEACON
HAI pump

[Rock_Robster]

Thanks all, this is great. I meet with oncologist on Monday and it looks like I have 3 things to add to the discussion:
MSI
BEACON
HAI pump

Just one more to add - confirm that the BRAF mutation is indeed the v600e variant. Majority are, but around 25% aren’t and this can have very different implications for treatment.

Good luck!
Rob

[stu]

Well done for getting informed .
Just a little bit of encouragement. When my mum was diagnosed we did not understand the implications of the right side location . Turns out neither did most oncologist! Nor did we get any information back then on the cell type but like you she responded to chemo and got significant shrinkage . A lot of positives in that alone .

Keep seeking out those windows of opportunity. You have a lot of good advice.
Stu

[Nor Cal]

Well done for getting informed .
Just a little bit of encouragement. When my mum was diagnosed we did not understand the implications of the right side location . Turns out neither did most oncologist! Nor did we get any information back then on the cell type but like you she responded to chemo and got significant shrinkage . A lot of positives in that alone .

Keep seeking out those windows of opportunity. You have a lot of good advice.
Stu

Thanks Stu. I'm trying not to think too far ahead, but it is very encouraging to hear about stage IV success stories. My oncologist has spent a lot of time with me on the right-sidedness of my tumor, so he seems to understand.