Postby Monimom » Sun Sep 19, 2021 12:44 pm
WOW !! Thank you all for your replies, I admittedly am ashamed that we are having so much trouble deciding this, as I know surgery is the ultimate way to get more time after this awful diagnosis. I haven't updated my signature in a long time, back in 11-2019 after the referrals from many people on various forums, we went to MSK and had met with Dr. Kemeny, my husband at that point had what appears to be 2 nodules in his lungs that are perceived to be mets, at the time his local onc had suggested starting Folfiri & Vectibix, Dr. Kemeny felt as though that was a good plan and that the lung mets likely made the HAI therapy a non option,, so he did the regimen for 8 months and it was looking promising, his cea had dropped to 7.5 (at dx it was over 3000) then one month it went up to 10, they did a scan and he had a new nodule... his onc wated to do a couple more rounds to see if it continued.. and it did..she finally did a liquid biopsy and learned he was no longer kras and braf wild. he mutated to kras and braf.. he has only 2 drugs left to use, so we reached out to Kemeny again... even though the lung mets are still there an a bit bigger they say they are stable so this visit she had more of a why not you have exhausted all systemic chemo that will have any real effect.. she referred to colon surgeon , who we met with, he was very informative and explained alot, said the sigmoid resection is straightforward ...we informed him of our reluctance which he completely understood, actally has us waiting until Oct so my husband can get the pump that goes one month between fills..., we understand no one knows how things will go .. so we're trying to understand what the efficacy of this will be when the outcome is really unknown... he explained the chemo resistance and that my husbands cancer has mutated etc.. he said the chemo is the same as what hes already had... I inquired about that with Dr Kemeny, she was quite abruptly said no it isn't .. its MUCH stronger... My husband has never has any surgery , only port a cath placement he's very nervous and quite reluctant so i'm trying to make sure we make a completely informed decision with realistic expectations, we have no doubt about the care at MSK is has already seemed outstanding compared to the local treatment , and feel beyond blessed we have the abiltiy to have Dr. Kemeny & Dr. Paty, if he agrees to this does anyone have any advice for me as to where I can stay in NY will hes in the hospital?? we live 4 hours from there but I dont want to drive back and forth... thank you soo much again
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged