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

Postby IM64 » Sat Apr 29, 2023 5:19 pm

beach sunrise wrote:Good on the CEA decrease so far.

Yes, but honestly we'd like to decrease the size)

beach sunrise wrote:What anti-inflammatories is your wife taking?

First of all IVC 3-4 times x 80 gram per week - about 1 kg per month. Also vit D3 30K/daily, celecoxib 400 mg, Boswellia 2.5g, Turmeric 3g, Fish oil 5g, MSM 1500 mg, Berberine 2.5g, Wobenzym, Serrapeptase 120K spu. Can not use aspirin due to bleeding.
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: 1853
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 May 01, 2023 11:52 am

MIA from my wife's flash analysis drill: the last three values on MCV, rdw, platelets, albumin, and at least one fibrinogen, bili, ceruloplasmin, CA199, ESR and GGTP.
Actually for us, ESR became one of the most common because it was so cheap, our long term inflammation control, and somewhat treatable.

Niacin/naicinamide are major anti-inflammatories for some cancer lines and chemokines (e.g. IL-8.) Their megadoses were the anticancer nutrient (discovery) of Canadian orthomolecular pioneer Abram Hoffer with some strong cancer response cases starting in the 1950s. Niacin causes blood vessel dilation (and flushing) and niacinamide is more nausea limited at high doses.
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 May 01, 2023 9:13 pm

We take Niacin and Niacinamide 500mg each. I think it's too small for therapeutic purposes. Do you have any experience with large doses?

MCV (ref 80-95 fL): 91.4, 93.2, 92.5
RDW (ref 12-14.9 %): 19.5, 19.3, 19.0
Platelets (ref 150-400 x10^9/L): 244, 251, 294
Albumin (ref 35-55 g/L): 35, 29, 39
Fibrinogen (ref 2-3.9 g/L): 5.79, 7.37, 7.63
Bilirubin (ref <22 umol/L): 6, 9, 8
Ceruloplasmin (ref 0.16-0.45 g/L): 0.57, 0.55, 0.54
CA 19-9 (ref <27 kU/L): 856, 881, 795
ESR (ref 2-30 mm/hr): 58, 69, 62
GGT (ref 12-37 U/L): 558, 524, 521
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: 1034
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 May 01, 2023 9:28 pm

To chime in here I take 1000mg Niacinamide right after breakfast, then 500mg niacin T.I.D
This is what ND suggested.
Fibrinigen I take Turmeric Force by New Chapter, 4 caps T.I.D. (it is a high dose) 4 caps after breakfast, 4 more caps 2 hrs later, 4 more caps 2 hrs later for a total of 12 caps per day. I was taking a different brand but can't get it now so had to swap to this one.
Last edited by beach sunrise on Tue May 02, 2023 12:29 pm, edited 1 time in total.
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 May 02, 2023 6:22 am

beach sunrise wrote:To chime in here I take 1000mg Niacinamide right after breakfast, then 500mg niacin B.I.D
This is what ND suggested.

Thanks beach sunrise, your adviсe are always helpful. So your dose is double of our (2g total). Looks like it make sense to try, because our "anti-Inflamation set" can't do anything with it.

beach sunrise wrote:Fibrinigen I take Turmeric Force by New Chapter, 4 caps B.I.D. (it is a high dose) I was taking a different brand but can't get it now so had to swap to this one.

I check New Chapter Turmeric Force - it comes in 400 mg/caps. You take 8 caps that is 3.2 g/day. It's close to our 3g/day. Moss advised A1Vitality brand of Turmeric (A1Vitality Turmeric Curcumin NovaSOL 1000mg), but it hard to find in Canada.
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: 1027
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 » Tue May 02, 2023 9:38 am

I also take 1,000 mg Niacinamide per day, but in the evening. Haven’t noticed any side effects at these levels.
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: 1853
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Tue May 02, 2023 10:23 am

In a "normal health" person, a typical nausea value (daily divided limit) for niacinamide might be ~3000 mg/d, but less for chemo and extensive liver mets.

Pure, instant release niacin's usual therapeutic use range is ca 1000 - 6000 mg/day, 2000 mg - 4000 mg per day in divided doses were common for cholesterol improvement (LDL down, HDL up). Niacin has been used at higher doses for extraordinary cholesterol levels (e.g. 9000 mg for cholesterol at 900-1000, IIRC) and up to 18,000 mg for some schizophrenia cases. Hoffer's personal webpages that described his earliest niacin for cancer cases are harder to find since his demise in 2009. His published cancer recommendations or discussions for niacin should be in his cancer and niacin books. e.g. Healing Cancer: Complementary Vitamin & Drug Treatments (Hoffer and Pauling, 2004) and Niacin: The Real Story, 2nd ed (2023)

With megadose niacin/-amide, people often watch AST and ALT (SGOT + SGPT). Better add that to the blood series list above. Time release niacin is avoided, it's harder on the liver at half dose and varies greatly with brand, sometimes really ugly.

Btw, IM64's graphics on Apr29 were easy to read yesterday but are fixed way too small today. Anybody?
Last edited by rp1954 on Tue May 02, 2023 12:35 pm, edited 1 time 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

User avatar
beach sunrise
Posts: 1034
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 May 02, 2023 12:31 pm

I am sorry. I just corrected post above about niacin and turmeric dosage.
It's T.I.D not B.I D.
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 May 02, 2023 9:07 pm

Rock_Robster wrote:I also take 1,000 mg Niacinamide per day, but in the evening. Haven’t noticed any side effects at these levels.

Do you take it to fight inflammation?
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 May 02, 2023 9:21 pm

rp1954 wrote:In a "normal health" person, a typical nausea value (daily divided limit) for niacinamide might be ~3000 mg/d, but less for chemo and extensive liver mets.

Thanks for info.
Taking into consideration the liver condition, we won't climb to very high numbers right now. Will try to increase Niacin/Niacinamide doses up to beach sunrise level - 1000mg Niacinamide and 1500mg Niacin and see how it works.

rp1954 wrote:Btw, IM64's graphics on Apr29 were easy to read yesterday but are fixed way too small today. Anybody?

Sorry, I don't write all test we did to my file.
Image
Image
Image
Image
Image
Image
Image
Image
Image
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 May 02, 2023 9:22 pm

beach sunrise wrote:I am sorry. I just corrected post above about niacin and turmeric dosage.
It's T.I.D not B.I D.

Thanks. Will try your doses from Tomorrow.
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: 1034
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 » Wed May 03, 2023 12:13 am

An ND recommended to one of his patients ( a lady I was really close to) to take Theanine by Vital Nutrients to enhance Irenatecan (I know I butchered that word). He had her start out at 1 cap every 2-3 hrs the day before folfiri, then the day of and day after to see if any improvement within a month with chemo then moved her protocol to 1 cap 30 minutes before breakfast, 1 cap 30 minutes before lunch, 1 cap 30 minutes before dinner, 1 cap before bed.
Also Selenomethionine to reduce resistance to Irinatecan.
Maybe talk with your doctor to get his opinion on these supplements. I have no experience with folfiri or these supplements, just my friend sending me her supplement protocol at the time.
Rp might be fimilar with these.
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 » Wed May 03, 2023 5:42 am

Perfect! Thanks a lot for that info.
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 May 08, 2023 7:00 pm

Today is the worst day in my life - my wife passed away and our cancer journey was ended too short... We tried all what we can, but unfortunately I couldn't save her.

Just 3 days ago, she was full of energy, felt great and in a great mood. We made our plans and enjoyed the dinner. But on Friday started diarrhea, and we could not avoid dehydration even with IV NaCl. On Saturday, the blood pressure dropped to 70/40 and the emergency docs were unable to bring it back. Just 3 day ago...

I'd like to say THANKS for all people who write here, share their knowledge and experience. You really help for all of us who is just started this way. And I wish everyone to get well and fight their cancer.

Thank you and good luck.
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

ElenaSoprano
Posts: 2
Joined: Tue Jun 07, 2022 11:58 pm

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

Postby ElenaSoprano » Mon May 08, 2023 7:15 pm

So sorry...Heartbreaking...May your wife rest in peace...


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