Anyone on Vectibix long-term?

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Bpaint
Posts: 21
Joined: Sun Oct 11, 2020 8:54 pm

Anyone on Vectibix long-term?

Postby Bpaint » Tue Sep 14, 2021 9:06 am

After my husband's surgery in April to remove the primary, a liver tumor and 40+ para-aortic lymph nodes, the plan was to radiate the lymph nodes that the surgeon could not get. But then the scans showed several new lung mets, so radiation was canceled. My husband's oncologist said it was time to pivot from attempting to cure the cancer to palliative care, and he gave three choices: (1) a clinical trial for an immune therapy drug combination, that had shown very little success on my husband's type of cancer; (2) a clinical study of using Vectibix monotherapy until it stopped working, and then try something different for awhile before switching back to Vectibix; or (3) Folfiri. My husband chose option 2, because his oncologist said it was worth a try before using up the Folfiri option. He has now been on Vectibix for 4 months, and his latest scans are stable, with some slight shrinkage. His oncologist said he can stay on this until it stops working, at least 2 more months, and then if something starts to grow he can either switch treatments or try to radiate the growth area while still taking Vectibix.

Has anyone managed to stay on Vectibix monotherapy for several months? We are really hoping that he can stay on it for awhile longer because it is so much more tolerable for him that Folfox was. The rash and peeling fingers suck, but he has good energy levels and very little nausea. At the same time, we worry that maybe he should be doing something more. And the scans every other month are so stressful. It's like we are just waiting for the treatment to stop working. And, it's hard to give up on the idea of a cure. But we have gotten second opinions from MSK and Northwestern, both of which concurred that there is no realistic way to try curing cancer that has such wide spread.
My husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes (25+)
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
CEA 113
Liver, colon and lymph node resection 4/21
New lung mets, Vectibix monotherapy started 6/21

catstaff
Posts: 138
Joined: Wed Mar 03, 2021 11:37 am

Re: Anyone on Vectibix long-term?

Postby catstaff » Tue Sep 14, 2021 12:49 pm

I don't have any experience with Vectibix since it's contraindicated for my husband (KRAS mutation, it is worse than useless for that) though I am aware that some members here have been on it off and on for a long time, perhaps not as monotherapy however. I just wanted to say that I'm surprised that anybody even suggested a possibility of a cure with such extensive distal LN spread. My husband had three distal nodes at diagnosis and they treated him sort of like a stage IIIC+ even though he was IV (but even a lot of IIIC patients relapse) so I was braced for a recurrence even though I hoped it wouldn't happen. Once it did I didn't have any illusions of a cure. (A very small fraction of patients are cured by chemo alone, I'm not discounting that, it's just unusual.) As I've said on other threads, I don't expect a true cure for any Stage IV cancer in my lifetime, certainly not in DH's. I am hoping for a long-term treatment, preferably with fewer side effects than what we have now, to arrive in time. GrouseMan said it might be "thousands" of diseases which, strictly speaking, is probably true, but I am optimistic that there are a handful of common pathways that could be attacked, at least for the most common cancers. So we may not need quite that level of personalized oncology.

All you can do is your best to try to keep the boat afloat as long as possible. Stable is good.
Last edited by catstaff on Sat Sep 18, 2021 7:46 am, edited 1 time in total.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Bpaint
Posts: 21
Joined: Sun Oct 11, 2020 8:54 pm

Re: Anyone on Vectibix long-term?

Postby Bpaint » Tue Sep 14, 2021 1:06 pm

His oncologist told us all along that getting rid of everything was a long shot, but that he still thought it was worth trying because he had seen it happen before using Folfox + cutting out as much as possible and then radiating the rest, even with extensive lymph node involvement. He changed his mind after the mets showed up in the lungs.
My husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes (25+)
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
CEA 113
Liver, colon and lymph node resection 4/21
New lung mets, Vectibix monotherapy started 6/21

catstaff
Posts: 138
Joined: Wed Mar 03, 2021 11:37 am

Re: Anyone on Vectibix long-term?

Postby catstaff » Wed Sep 15, 2021 5:08 am

When we were first meeting with his oncologist and discussing the total adjuvant treatment (what they often use for rectal now), the onc told us that he'd seen tumors like DH's "melt away" and well, it didn't. The pathological grade from the biopsy was returned as G2 so perhaps he didn't appreciate how aggressive the tumor was. (The surgical specimen was graded G3.) We know it was fast-growing since DH had a screening colonoscopy in 2015 and it wasn't there; the only thing noted was sigmoid inflammation. But it was suggested to us that he might be "cured" (I use that term cautiously with cancer, especially IIIC) as well. DH was crushed when it recurred. So I know how that feels.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-


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