Looking For Hope DH Stage IV CRC

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Joined: Thu Jun 22, 2017 10:01 am

Looking For Hope DH Stage IV CRC

Postby justbreathe » Sat Jan 20, 2018 1:53 pm

I know there are so many out there with husbands and loved ones hoping to find some feedback for cures or just more quality time. In the last 19 months life has been like a roller coaster ride. Ups and downs (a lot of down) with twists and turns along the way. My DH was diagnosed in June 2016 (all info below) While he was in his first rounds of Chemo i was diagnosed with Breast Cancer. This is something I don't talk about much because mine was in the early stage and after surgery and 6 weeks of Radiation mine was over. I was lucky enough not to need Chemo but I sat with my husband through 6 months of treatment. It was tough sitting in a Chemo room with everyone, knowing it could have been me and how blessed I felt. I will be going for my 1 year follow up soon hoping I get a good outcome but knowing even if I do my husband will not. Cancer may be over for me but my fight still goes on. Mark (DH) still puts up a good fight but I see the tired look on his face. He's tried to stop all Meds but as soon as treatment stops his CEA starts going back up. I know the CEA markers are different with everyone but it seems to be consistent with him when CEA goes up his Cancer is spreading again. His doctor wants him to go back on the Chemo infusion again but he said he doesn't want to do that again. So for now he is only on the Xeloda 2weeks on and 1 week off until we find a better direction. His Onc is looking into Clinical Trials but with the genetic test they've done they are saying most won't work on him.

If anyone has positive outcomes on trials with the same direction of Cancer as DH, I would love some input. I am hoping his Doctor comes up with something but all we can do is hope and pray that something comes along.
DH @ 52
DX: 6/21/ 2016
Stage IV RC Lower rectum
Mets in lung and liver
KRAS c.182A>G (Q61R)
NRAS No Mutation Detected
Chemo 12 rounds 11/14/2016 - 05/17/2017 (shrinkage in tumors lungs and liver)
Folfox 6 : Oxaliplatin ;Leucovorin ; 5-FU (fluorouracil)
Rad/Chemo 06/16/2017(Xeloda 14 treatments to make him more comfortable)
Xeloda (capecitabine) 800 - 900mg 10/17 8 per day 2 wks. on 1 wk. off
Camptosar (irinotecan) 125 mg/m2 IV q wk 3 on 1 off x 12 Cycles

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Joined: Sat Mar 11, 2017 12:44 pm

Re: Looking For Hope DH Stage IV CRC

Postby SarahS » Sat Jan 20, 2018 2:48 pm

I think my husband has a very similar mutational situation as your

This is a clinical trial I would be looking into. I don;t know if there is a center near you that is running it

Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras G12C MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: Looking For Hope DH Stage IV CRC

Postby rp1954 » Sat Jan 20, 2018 4:17 pm

Some are able to deal with persistent mets by mild continuous chemo modulated by mild drugs and high potency supplements as immunochemo. Various pieces are described in the literature. The resistance - mutational aspects are overcome additively by several (to many) mild or even beneficial adjuncts. The ADAPT backbone (xeloda+celecoxib) is a start, but other items can be added (and the results observed and measured) until various (extra) markers improve. Without enough modulation, the expression of various markers will increase until there are scannable mets. With good modulation, the side effects are lower too.

Current clinical practices are inadequate to do a thorough job tracking these changes in cancer mutation or expressions in real time. You may have be your own advocates and implement things yourselves. Part of the problem is that heavy chemo distorts many markers and panels; clinicians think various kinds of data are always unimportant or meaningless, when they destroyed yours. Nicer forms of immunochemo can have much more stable data with less noisy markers even while increasing the intensity of treatment, perhaps beyond the heaviest straight chemo.

This is "easiest" earlier than later, with fewer sites, less tumor burden, and fewer mutations. Ideally one keeps everything nice with zero preturbations; or only tracks 1-2 active problems at a time. Earlier one is fighting for cancer extinction and long remissions; later one is more likely fighting for some extra time.
Last edited by rp1954 on Sat Jan 20, 2018 4:33 pm, edited 2 times in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Looking For Hope DH Stage IV CRC

Postby NHMike » Sat Jan 20, 2018 4:20 pm

This looks like a relatively rare mutation (G12* are the most common) and I only found https://targetedcancercare.massgeneral. ... -(c-182A-G) as matching (it's a KRAS trial - not specific to the gene mutation).

Your husband has already been through a lot (I'm on XELOX and it's rough) and I understand not wanting to go through more chemo. I had a look around for papers on specific therapies and did not find any.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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