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

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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 » Mon Feb 13, 2023 6:42 pm

IM64 wrote:Thank you. I read about low dose glutamine (and cabbage juice) for GI health in your old posts.
15-30 g/day? I also read somewhere glutamine can be used to produce glutathione and we don't want glutaonalthione when we treat cancer, is it right?

Glutamine metabolism, and cancer nutritition, are complex subjects. Glutamine can have growth inhibition or growth promotion properties or both. With cancer, glutamine can become an essential nutrient.

Things that I noticed amongst all the papers and patents I read, were that small chemical/nutritional changes or additions could separate growth, inhibition, (massive) apoptosis or necrosis. This included precursors of glutathione.

My responses to this include improved and expanded blood testing; better inflammation and noise control e.g. IVC; chemical personalization; the nutrional search for improved inhibition and immune function. Backed up by better positioning for locally curative surgery(s).

All of my wife's episodes of true cancer marker escalation appeared to be directly tied to chemical deficits, usually higher potency nutrients lost, restored or initiated. (also 5FU and celecoxib)
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

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

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

Postby utahgal7 » Tue Feb 14, 2023 9:42 am

IM64:

With regard to fucoidan, I found this recent article outlining fucoidan's enhancing effect on capecitabine https://www.sciencedirect.com/science/a ... via%3Dihub.

My concerns with fucoidan relate to the exposure of heavy metals. I would verify your fucoidan supplement of choice has been tested for heavy metals because seaweed contains many heavy metals (arsenic, cadmium, lead, etc.) Heavy metal exposure can be carcinogenic.

Maybe rp1954 could weigh in with his opinion. Perhaps, fucoidan's benefits might outweigh risks in your wife's case.


Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

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 » Wed Feb 15, 2023 1:25 pm

utahgal7 wrote:With regard to fucoidan, I found this recent article outlining fucoidan's enhancing effect on capecitabine https://www.sciencedirect.com/science/a ... via%3Dihub.

Thank you! That is important especially we want to switch to Xeloda (capecitabine). I never thought about fucoidan / heavy metals. Definitely need to research it. My main questions about fucoidan were purity and source (Wakame, Mozuku, Kombu ect).
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 » Wed Feb 15, 2023 1:34 pm

rp1954 wrote:Glutamine metabolism, and cancer nutritition, are complex subjects. Glutamine can have growth inhibition or growth promotion properties or both. With cancer, glutamine can become an essential nutrient.

Yeah, it's not clear with glutamine. So we decided to use it for GI treatment (with glucosamine) when needed, but not on daily basis. Will definitely go with it if any evidence to 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

Rock_Robster
Posts: 1028
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

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

Postby Rock_Robster » Wed Feb 15, 2023 9:53 pm

IM64 wrote:
rp1954 wrote:Glutamine metabolism, and cancer nutritition, are complex subjects. Glutamine can have growth inhibition or growth promotion properties or both. With cancer, glutamine can become an essential nutrient.

Yeah, it's not clear with glutamine. So we decided to use it for GI treatment (with glucosamine) when needed, but not on daily basis. Will definitely go with it if any evidence to help.

Same conclusion here; I have used to short term for surgery recovery, but I’m not confident in risk/reward benefit to use ongoing.
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

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 » Mon Feb 27, 2023 6:47 am

On the glutamine, we used 1 gram a day for maintenance in the face of prior injury(surgery) or tissue breakdown (sores, stomatitis) not too worried about the low dose glutamine. 5 grams/day was for wife's direct powder tx of the small, acute sores during 5FU-folic acid toxicity.

The injured mucosal surfaces down to the small intestine are going to get first shot at using and depleting the glutamine. If you don't maintain mucosal integrity, you're SOL on chemo. Second, all that high dose IV vitamin C with KRAS is supposed to be depleting glutathione in the cancer cell.

What else can you do ? Adjust vitamin D3. Great variability in mCRC but usually way low blood levels, often refractory low level.

How many 25 hydroxy vitamin D values do you have?
After 1+ million iu vitamin D3, even running up to 17,000 iu/day, she wasn't even sufficient by the endocrinology society reckoning and way below therapeutic blood levels.
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 » Mon Feb 27, 2023 11:42 am

rp1954 wrote:On the glutamine, we used 1 gram a day for maintenance in the face of prior injury(surgery) or tissue breakdown (sores, stomatitis) not too worried about the low dose glutamine. 5 grams/day was for wife's direct powder tx of the small, acute sores during 5FU-folic acid toxicity.

It definitely makes sense. With our from time to time GI bleeding we need to maintain mucosal health. I will add 1g of glutamine daily - it is a real low dose and hope it will work. Thank for advice.

rp1954 wrote:How many 25 hydroxy vitamin D values do you have?
After 1+ million iu vitamin D3, even running up to 17,000 iu/day, she wasn't even sufficient by the endocrinology society reckoning and way below therapeutic blood levels.

My wife's 25 hydroxy is 138.7 nmol/L that is good inside the reference 75-250 nmol/L. Her usual dose is 10,000 iu/day (4x 2,500). Maybe now I should to cut it a little because I found recommendation to avoid simultaneous vitamin D with IVC due to diminished effectiveness (https://tratamenteanticancer.files.word ... erence.pdf). We are doing IVC 3-4 times per week for now. So I think whether delete D in IVC days or leave it and make a gap 8-10 hours between IVC and Vit D. More towards to the second option.
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

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 » Mon Feb 27, 2023 5:15 pm

IM64 wrote:
rp1954 wrote:On the glutamine, we used 1 gram a day for maintenance in the face of prior injury(surgery) or tissue breakdown (sores, stomatitis) not too worried about the low dose glutamine. 5 grams/day was for wife's direct powder tx of the small, acute sores during 5FU-folic acid toxicity.

It definitely makes sense. With our from time to time GI bleeding we need to maintain mucosal health. I will add 1g of glutamine daily - it is a real low dose and hope it will work. Thank for advice.

1 gram is what worked for my wife with milder chemo. Maybe it would have worked at 500 mg avg.
You need to keep your eyes on your wife and data to personalize the dose with oxi/iri/Avastin

rp1954 wrote:How many 25 hydroxy vitamin D values do you have?
After 1+ million iu vitamin D3, even running up to 17,000 iu/day, she wasn't even sufficient by the endocrinology society reckoning and way below therapeutic blood levels.

My wife's 25 hydroxy is 138.7 nmol/L that is good inside the reference 75-250 nmol/L. Her usual dose is 10,000 iu/day (4x 2,500). Maybe now I should to cut it a little because I found recommendation to avoid simultaneous vitamin D with IVC due to diminished effectiveness (https://tratamenteanticancer.files.word ... erence.pdf). We are doing IVC 3-4 times per week for now. So I think whether delete D in IVC days or leave it and make a gap 8-10 hours between IVC and Vit D. More towards to the second option.

I think in ng/mL, where 138.7 nmol/L = 55.6 ng/mL
Our goals were higher blood levels with higher doses, however you schedule the D3 and IVC. In the lower therapeutic ranges there is a lot of flexibility. There is no well founded, agreed set of ranges so consider these rough ranges as my POV for mCRC.
0 - 30 ng/mL inadequate to grossly deficient
32 - 59 ng/mL probably acceptable to any std Dr, minimally acceptable to me
60 - 100 ng/mL probably most common integrative medicine target range for cancer
101 - 150 ng/mL probably uncommon therapeutic range but easy safety precautions.
over 200 ng/mL special safety precautions and caveats for specialized approach with a medical sponsor

Std medicine (and labs) will be prejudicial about levels over 100 ng/mL and there is less chemo experience published above 100 ng/mL. My wife stayed above 100 most of the time on her milder, daily immunochemo.
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 » Mon Feb 27, 2023 7:02 pm

rp1954 wrote:1 gram is what worked for my wife with milder chemo. Maybe it would have worked at 500 mg avg.
You need to keep your eyes on your wife and data to personalize the dose with oxi/iri/Avastin

Sure! We just have very short history to analysis, so really need some starting points to check and adjust according to our case.

rp1954 wrote:There is no well founded, agreed set of ranges so consider these rough ranges as my POV for mCRC.

I understand it. That is invaluable experience and I am very grateful you for sharing it!
I will ask ND if it's ok to divide IVC in the morning and D in the evening time to continue use D every day.
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 » Mon Feb 27, 2023 7:06 pm

Today we started new protocol ALA + LDN (Alpha-Lipoic Acid plus Low-Dose Naltrexone) which is complementary to our main systemic chemo. Thanks again Faith42 for ALA direction. We discussed it with ND, and he agreed it can be helpful especially with low-dose naltrexone. Also, Internet research shows that it is quite often used as a complementary, or even alternative cancer treatment. Some interesting results are shown.
We stopped on Dr. Burton M. Berkson protocol (more details are here - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142095/).

In short, the protocol is:
- First intensive week - IV vitamin C every morning and IV racemic α-lipoic acid (ALA) 300 to 600 mg every afternoon after a meal. The oral protocol included low-dose naltrexone (LDN) 4.5 mg at bedtime, and racemic ALA 300 mg twice daily, selenomethionine 200 µg twice daily, silymarin 900 mg twice a day and hydroxycitrate (HCA) 500 mg 3 times daily.
- After 1 week, treatment continue IV ALA infusions twice a week and IV vitamin C twice a week. Oral protocol continue the same as for the first week.
- intensive week have to be repeated every 3 month.

There is also B50 complex at the oral protocol, but we decided to skip it due to using selected vit. B in our supplement protocol.

Honestly we don't expect magical results (we just want it!), but hope it will add synergistic effect with conventional oncology, supplement/off label drugs protocol, diet, exercise, etc.
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 » Mon Mar 06, 2023 2:27 pm

Started Folfiri from today. No Avastin added due to previous GI bleeding.

We also finished first intensive week of ALA/LDN protocol. Will continue with that and add mistletoe treatment. Weekly protocol for complementary treatment for nearest time will looks like that:
Image

Supplements also will be continue. We have too much to be improved according to blood test.
Last edited by IM64 on Tue Mar 21, 2023 9:17 am, edited 2 times in total.
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 » Mon Mar 06, 2023 5:38 pm

Looks like a very good plan!
It takes hard work and dedication adding personlized protocol benefit plus SOC to stop/slow progression.
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 07, 2023 3:56 pm

Unfortunately no one knows what can really help. So we try different ways in the hope that something will works. Also we started 10 days TCM (herbs) course to boost immune system as Moss advised.
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 07, 2023 5:13 pm

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.
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 07, 2023 6:25 pm

Thanks, probably will do.
I see in your signature you tried NCI chemosensitivity test. Did you continue with it? What is you impression?
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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