mCRC Stage IV mets to LV and LN - what can we do more?

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IM64
Posts: 64
Joined: Wed Nov 02, 2022 5:51 pm

Re: Positioning for Plan B

Postby IM64 » Fri Mar 17, 2023 10:32 pm

rp1954 wrote:One key to this may be how far you are willing and able to go (bi)weekly, monthly, or even once. e.g. NYC, Boston, Houston, etc.

Of course we will try to find options in Canada for plan B. As minimum we have a thoracic oncologist who was agree to do SBRT to remove all/most LN nodules (we have about 20-25). It may be plan B first step. He also said they can do SBRT for liver too (in general, not about our particular case). We have an app with him Apr.21 about lung SBRT and will try to get referral from him to liver surgeon oncologist.

I think we can travel across US for some major steps (liver surgery for example). For that case LA, San-Diego or Nashville are preferable.

rp1954 wrote:Another major key is what you can do remotely - research, telephone, (international) telemedicine, and, at home.
Can you elaborate more on these factors because it affects finding, focusing on, choosing and doing plan B options.

Research that is what I do 90% of my time every single day from Oct.6, 2022, when the previous life is over. Not sure about telemedicine as we never try it, but I believe it's not a rocket science and we can use it if needed.

We had a meeting with onc today after 2 weeks of first Folfiri infusion.

Good news - CEA dropped from 651 to 481. I believe Folfiri started work + our IVC, ALA/LDN, Mistletoe, TCM, lot of vits/supplements etc.

Bad news - If we switch to Xeloda, Health Ontario will consider it as a 3rd line of treatment. So we will have just one line (fourth and the last) in reserve. We also can pause Folfiri but only for 3 month. If longer - Folfiri will be closed automatically. During this pause, I can try Xeloda on my own - it won't be officially prescribed.

Raw idea is:
1. Continue Folfiri
2. Reasonable reduce Irinotecan (onc agree do it if we want) for minimum immune system damage (Leave 100% of 5FU/LV)
3. Add every day small dose of Capecitabine/Tegafur (gradually increasing it moving away from infusion day) to get benefits from continuously therapy. May be do it on chronomodulated basis.

We asked our oncologist about it today. He was "a little surprised", but generally agree it can works - just need to constantly monitor side effects, blood markers, etc. And of course it should be good researched before and started from real small doses.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

IM64
Posts: 64
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Mar 21, 2023 3:10 pm

beach sunrise wrote:If it were me in your situation I could call Dr. Belanger in MA and at least get a consult. He might very well be able to advice and help you being in Canada.

Got answer from Dr. Belanger executive assistant - Unfortunately they unable to treat patients who live outside the U.S.
Anyway thank a lot for your input and help!
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

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beach sunrise
Posts: 801
Joined: Thu Mar 05, 2020 7:14 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby beach sunrise » Tue Mar 21, 2023 3:27 pm

Well darn!
There is also a list of docs on orthomolecular.org. Might get someone there.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

IM64
Posts: 64
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Mar 21, 2023 7:20 pm

Thanks, will check it.
I spend a lot of time reading old posts (tons of useful information in one place!) and found post with list of ND/ID that looks very promising - viewtopic.php?p=513823#p513823
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

User avatar
beach sunrise
Posts: 801
Joined: Thu Mar 05, 2020 7:14 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby beach sunrise » Tue Mar 21, 2023 7:45 pm

I use Belanger, Rosenberg and Yance
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

IM64
Posts: 64
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Mar 21, 2023 8:08 pm

Do you need to visit all of them in person?
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

User avatar
beach sunrise
Posts: 801
Joined: Thu Mar 05, 2020 7:14 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby beach sunrise » Tue Mar 21, 2023 8:22 pm

No, they all work with you remotely.
It stinks Belanger can't. Maybe some others can.
I consulted with Chang. His niche is dendric cell therapy really is what I got out of the consult. He wasn't onboard with ADAPT at all with me.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

IM64
Posts: 64
Joined: Wed Nov 02, 2022 5:51 pm

Re: mCRC Stage IV mets to LV and LN - what can we do more?

Postby IM64 » Tue Mar 21, 2023 8:38 pm

beach sunrise wrote:No, they all work with you remotely.
It stinks Belanger can't. Maybe some others can.

Actually, we also didn't expect refusal.
I found that many docs don't want to continue when hear about advanced stage 4. That is their right, we will look for others.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin


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