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

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IM64
Posts: 90
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: 90
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: 1041
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 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

IM64
Posts: 90
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

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beach sunrise
Posts: 1041
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 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

IM64
Posts: 90
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

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beach sunrise
Posts: 1041
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 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

IM64
Posts: 90
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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mobrouser
Posts: 174
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

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

Postby mobrouser » Wed Mar 22, 2023 7:49 pm

IM64 wrote:
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.


In the case of Dr. Belanger I suspect it may be related to their liability insurance. Coverage for out of country patients adds significantly to premiums so they may choose to not want those costs in their practice.
CC Dx 102017 age 58
Lap. right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX start Jan/18 end Aug/8 (felt like a year)
CEA - 01/15/18-2.8; 07/29/18-5.3; 09/19-2.4; 03/20-2.7; 09/20-2.9
CT scan 08/18 - Clear; 10/19 - Clear; * 10/20 - 8mm & 6mm nodules in liver
PET scan 09/18 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

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

Postby IM64 » Thu Mar 23, 2023 10:35 am

Yes, you are probably right. Otherwise it's hard to understand the reason of refuse to help/treat remotely.
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: 90
Joined: Wed Nov 02, 2022 5:51 pm

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

Postby IM64 » Sun Apr 02, 2023 4:17 pm

The second cycle of the new chemo gives us cautious optimism and hope that Folfiri works better than Folfox for as. CEA dropped from 651 to 290 in a month and that is the lowest numbers we have seen. We really hope that this trend will continue. Actually it's hard to say what works better - Folfiri or all complementary treatments we are doing now (IVC 3 times per week, ALA/LND, Mistletoe, off-labeled drugs, lot of supplements, keto diet, etc). Probably they all do their job and works synergistically to fight the cancer and boost/safe immune system.

We are also preparing to high dose vitamin D treatment. Some additional blood/urea tests are going to be done next week (PTH, Calcitriol, 25-hydroxy, Calcium (total and ionized), BUN, Creatinine, Albumin, ect). If everything is well, we will raise D3 dose which is 20K/day for now. The goal is lower PTH to 10-15-20 pg/ml by vit D3, keeping calcium in reference and without kidneys problems. Coimbra protocol is used for reference. Thanks rp1954 for your questions about blood tests - they gave me a direction where to research.

We also researched some liver surgery clinics in Europe and Asia (medical tourism). As was expected most of them don't want any other mets or tumors outside of liver. If we can decide that, we will probably have two options for our heavily damaged liver - transplantation or two/multiple stage surgery. It won't be easy in any case.

So we are planning to continue with thoracic radiologist who previously agreed for lung SBRT. Will meet him Apr. 26 and going to go ahead if nothing changed. Also want to raise question about primary colon tumor resection (which is really bleeding and make a lot of unnecessary problems) on the next meeting with onc.

So far, there are only plans for now...
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: 1041
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 » Sun Apr 02, 2023 6:09 pm

So, you're thinking maybe SBRT so it will mean just one sight left and surgery would be possible?
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Sun Apr 02, 2023 8:23 pm

IM64 wrote:We are also preparing to high dose vitamin D treatment. Some additional blood/urea tests are going to be done next week (PTH, Calcitriol, 25-hydroxy, Calcium (total and ionized), BUN, Creatinine, Albumin, ect). If everything is well, we will raise D3 dose which is 20K/day for now. The goal is lower PTH to 10-15-20 pg/ml by vit D3, keeping calcium in reference and without kidneys problems. Coimbra protocol is used for reference.

My only references for Coimbra are summaries that did not include any comments on chemo. My impression is that Coimbra is even more aggressive on vitamin D dosing than "our" Dr JJ Prendergast was in 2011. We did not press things as hard because her unbiopsied liver objects dissolved or shrank at ca 44,000 iu D3/day while on the daily chemo brew, over several scans after 2nd surgery.

Also not included, Phosphorus level, [P], as a relevant blood panel check. The [Ca][P] product has a limit that is used as the next clinical step to finer control near high levels that could damage the kidneys. I am not sure whether phosphorus is harder to control on chemo with high phosphorus food sources.

Also it sounds like Canada may soon make substantial vitamin D3 supplies more difficult to order.
We tended to buy several year quantities early to avoid supply problems and control costs.
Last edited by rp1954 on Sun Apr 02, 2023 10:37 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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

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

Postby IM64 » Sun Apr 02, 2023 8:59 pm

beach sunrise wrote:So, you're thinking maybe SBRT so it will mean just one sight left and surgery would be possible?

Something like that.
Our main problem is liver (above 70% is damaged). Dominant lesion in the front right lobe is 12.6 x 9.0 cm and posterior right lobe lesion is 5.3 x 4.0 cm. So right lobe probably never can be restored/treated unless a miracle happens. But left lobe has just one lesion 5.9 x 3.1 and theoretically can be resected. Therefore, a two-stage surgery may be possible - resect tumor on the left lobe, wait for healing and remove right lobe (partial hepatectomy). Or another option may be LDLT - live donor liver transplantation (hope I can be donor).

Both option can be considered only if there are no other mets/tumors outside the liver. So lungs mets and prime tumor are just steps to liver treatment. At the moment we don't see any other chances/options.
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: 90
Joined: Wed Nov 02, 2022 5:51 pm

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

Postby IM64 » Sun Apr 02, 2023 9:54 pm

rp1954 wrote:My only references for Coimbra are summaries that did not include any comments on chemo. My impression is that Coimbra is even more aggressive on vitamin D dosing than "our" Dr JJ Prendergast was in 2011

I agree. Coimbra protocol is aggressive. I took from it idea in general. We are going to use book How Not To Die With True High-Dose Vitamin D as a guide for blood/urine tests, how to Interpret results and adjust dose accordingly. It also explain how things works and for me it is important to understand that.

rp1954 wrote:Also not included, Phosphorus level, [P], as a relevant blood panel check. The [Ca][P] product has a limit that is used as the next clinical step to finer control near high levels that could damage the liver. I am not sure whether phosphorus is harder to control on chemo with high phosphorus food sources.

Yes, thanks. Phosphate is in the plan. There are about 20 tests need to be done all together. How often did you check it during the treatment? Once week vs 2 weeks vs month?

rp1954 wrote:Also it sounds like Canada may soon make substantial vitamin D3 supplies more difficult to order.
We tended to buy several year quantities early to avoid supply problems and control costs.

Good point, thanks. I'm buying D3 (10K/one pill) on iHerb now, and it works fine. But have a some stock is a good idea.
All D3 I see is as cholecalciferol. So I just check if no calcium added.

If you remember any important details about that treatment and don't mind to share them, I would highly appreciate it.
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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