New here, seeking info/advice: 41yo stage 4 CRC, mets to 3 sites

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Winterfall
Posts: 1
Joined: Thu Feb 10, 2022 9:37 pm

New here, seeking info/advice: 41yo stage 4 CRC, mets to 3 sites

Postby Winterfall » Sun Dec 04, 2022 11:33 pm

Hi everyone,

This is about my partner, who is 43 and was 41 when he was diagnosed. We have a young child together. It’s a very tough situation for us.

As you can see, the cancer was very advanced by the time it was caught. No one has raised any treatment options except chemo and we understand that it’s not curative. We live in Canada and the first-line funded treatment in our province is Folfiri plus Avastin. Second-line funded is Folfox plus Avastin. Beyond that, there are no other funded options for his MSS, KRAS-mutated profile. One third-line option is Lonsurf, for which we do have private coverage.

I’ve been reading Colon Talk since we got the diagnosis but haven’t posted before. I guess I didn’t think that there was much anyone could say. Making it to 5 years would be a minor miracle, but we haven’t felt the wolf at the door until now…for example, I know that brain mets are highly rare, but he’s got the right set of risk factors (rectal primary, KRAS, lung mets). Maybe he won’t live long enough to worry about brain mets, I don’t know.

All that being said, I’d really appreciate it if folks could comment on the following:

1) Do you see any other treatment options that he could consider?

2) The supplement protocols that are discussed here - are they strictly for off-chemo periods? How would that interact with his ongoing blood thinner? What if he’s also taking CBD?

3) I’ve been meaning to ask his oncologist, but does anyone know if having an APC mutation necessarily means that he has a hereditary type of CRC? (His mutation is not the one found in Ashkenazi Jewish people.)

Thank you so much in advance.
Partner to Male, now 43yo; Canada
MSS; KRAS (G12A), PIK3CA, APC, more
02/21 - stage 4 CRC, rectal primary; mets to liver, lung, peritoneum; colostomy; palliative chemo only
03/21 - Folfiri+Avastin
04/21 - pulmonary emboli, blood thinner; filgrastim for neutropenia
08/21 - partial response/stable; 12 cycles
10/21 - slight growth in lungs
01/22 - progression
02/22 - Folfiri+Avastin again
06/22 - partial response/stable; 10 cycles
10/22 - progression; mets in upper lung
11/22 - Folfiri+Avastin again

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: New here, seeking info/advice: 41yo stage 4 CRC, mets to 3 sites

Postby stu » Mon Dec 05, 2022 6:31 pm

Hi ,
Sorry I can’t answer your questions but just wanted to say I hope the chemo works well for your husband .
It sounds a similar funding approach to the U.K. . However my mum has only used Cap tablets and Oxaliplatin. She responded extremely well to it .
That allowed other approaches to be added in .

Hope he is extremely chemo responsive.
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: New here, seeking info/advice: 41yo stage 4 CRC, mets to 3 sites

Postby Rock_Robster » Mon Dec 05, 2022 8:56 pm

Hello, welcome to the forum and I’m sorry about the news.

Has anyone discussed accessing clinical trials with you? I agree that this does sound like quite advanced/systemic disease so locoregional treatments are probably less likely
to be supported. Standard of care chemo is fine, but as you say it will always be there and it doesn’t work forever, so good to start building an options for other emerging treatments (even if they only maintain stable disease and QoL, that’s still better than the alternative).

Also I’m just curious, it looks like FOLFIRI was rechallenged after the lung progression on treatment - what was the logic there?

Thanks,
Rob
Last edited by Rock_Robster on Tue Dec 06, 2022 5:34 am, edited 2 times in total.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

User avatar
Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New here, seeking info/advice: 41yo stage 4 CRC, mets to 3 sites

Postby Jacques » Tue Dec 06, 2022 5:06 am

    Partner to Male, now 43yo; (which province?), Canada
    MSS; KRAS (G12A), PIK3CA, APC, more
    02/21 - stage 4 CRC, rectal primary; mets to liver, lung, peritoneum; colostomy; palliative chemo only
    03/21 - Folfiri+Avastin
    04/21 - pulmonary emboli, blood thinner (which one?); filgrastim for neutropenia
    08/21 - partial response/stable; 12 cycles
    10/21 - slight growth in lungs
    01/22 - progression
    02/22 - Folfiri+Avastin again
    06/22 - partial response/stable; 10 cycles
    10/22 - progression; mets in upper lung
    11/22 - Folfiri+Avastin again
(1) Do you see any other treatment options that he could consider?
(2) o The supplement protocols that are discussed here - are they strictly for off-chemo periods?
    Not necessarily. It depends. Some protocols fall in the category "Complementary Medicine" which means that they can be taken in addition to chemo. Others fall in the category "Alternative Medicine" which means that they are taken instead of chemo.

    Also, you could browse through Forum member lohidoc's old blog below to see what he had to say about supplements, meds, etc. Lohidoc was from Sudbury, Ontario
    .

    Lohidoc's blog
    https://marcdu4.wordpress.com/
o How would that interact with his ongoing blood thinner?
o What if he’s also taking CBD?
(3) I’ve been meaning to ask his oncologist, but does anyone know if having an APC mutation necessarily means that he has a hereditary type of CRC?


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