High Dose IVC

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beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

High Dose IVC

Postby beach sunrise » Mon Aug 15, 2022 7:24 pm

I have had 225 IVC infusions (75g) over 2 1/2 yrs. I really credit no side effects from folfox and current xeloda to IVC and also NED on scans even though CEA is still high but the rest of bloodwork is fine. IVC is helping to beat down where ever it has been trying to set up camp so far.
Scan with contrast on Wed along with expanded blood panels. Fingers crossed.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

rp1954
Posts: 1621
Joined: Mon Jun 13, 2011 1:13 am

Re: High Dose IVC

Postby rp1954 » Fri Aug 19, 2022 2:46 pm

wow two years of IV vitamin C. Time sure goes by fast.
At two IV vitamin C per week, the total count adds up.
Glad it prevented the xeloda hand foot syndrome so well plus all its other benefits.
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 to almost nothing mid 2018, mostly IV C

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: High Dose IVC

Postby prayingforccr » Fri Aug 19, 2022 2:53 pm

beach sunrise wrote:I have had 225 IVC infusions (75g) over 2 1/2 yrs. I really credit no side effects from folfox and current xeloda to IVC and also NED on scans even though CEA is still high but the rest of bloodwork is fine. IVC is helping to beat down where ever it has been trying to set up camp so far.
Scan with contrast on Wed along with expanded blood panels. Fingers crossed.


That’s a ton of money.

But you can’t take it with you when you’re dead.

Maybe Ill start three a weeks once I begin my sbrt/immuno in a couple of weeks
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

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beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: High Dose IVC

Postby beach sunrise » Fri Aug 19, 2022 5:56 pm

Thanks guys!
Yes, it is expensive especially now with everything else so expensive. Here it is $150 per infusion including the nurse coming to my house. So, really it's so worth it to go about my day and have no real appts to plan for. My whole protocol is home based.
Pccr, IVC can only help especially if kRAS, not harmful one bit only beneficial. If you do it let us know please.
Time sure does fly. Sometimes I just sit back and go "WOW." Thank you Rp.
Great point, Claudine! I will def ask the difference between lymphnode vs met!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: High Dose IVC

Postby prayingforccr » Fri Aug 19, 2022 6:18 pm

beach sunrise wrote:Thanks guys!
Yes, it is expensive especially now with everything else so expensive. Here it is $150 per infusion including the nurse coming to my house. So, really it's so worth it to go about my day and have no real appts to plan for. My whole protocol is home based.
Pccr, IVC can only help especially if kRAS, not harmful one bit only beneficial. If you do it let us know please.
Time sure does fly. Sometimes I just sit back and go "WOW." Thank you Rp.
Great point, Claudine! I will def ask the difference between lymphnode vs met!



Get the met cryoablated once and for all
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

rp1954
Posts: 1621
Joined: Mon Jun 13, 2011 1:13 am

Re: High Dose IVC

Postby rp1954 » Wed Oct 19, 2022 4:54 pm

Long term IVC can have several advantages - lower chemo side effects, especially Hand Foot Syndrome and vitamin C depletion; better chemo cancer kill (specific chemo and cancer genetics related); viral kill and treatments; anti-histamine; anti-inflammatory effects; temporary pain control in terminal PanCan patients for our doctor; or energy in terminal patients like bedridden to playing for an afternoon and a family meal. We also use it to stabilize blood labs to be as consistent as possible, IVC 8-30 hr before the blood draw probably 16 hrs most common, last of afternoon or early evening, blood draw next morning.

For those planning or starting long term IVC, it is important to identify local and bulk opportunities to cut costs. Whether "frequent flyer" discounts for full service from a local clinic, or component based shopping, aggressive investigation is important for a multiyear effort and expense. We had full service from for a little while, even home MD once a week, but were able to convert to total self management of supplies and nurse with his blessing - cheapest and most convenient, at home.

Opportunities vary greatly by patient effort and capabilities, suppliers, locale and jurisdiction.
I've seen ridiculous prices from clinics, even by customer, to rock bottom in the same city with volume, different practices, and cheaper sources. High, over $500 mentioned by a breast cancer patient in UK that sounded scammy to me, to ca $25 in Asia. So knowledge is power.
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 to almost nothing mid 2018, mostly IV C

User avatar
beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: High Dose IVC

Postby beach sunrise » Wed Oct 19, 2022 9:20 pm

Rp, I can't ever thank you enough for all your info and years of research. It has helped me so much.
I am all about the mild approach boosted by naturals like IVC, which is my most important part of ADAPT+++.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

utahgal7
Posts: 96
Joined: Fri Sep 11, 2020 12:04 pm

Re: High Dose IVC

Postby utahgal7 » Thu Oct 20, 2022 8:14 am

Quick question for either beach, rp or anyone else on here that takes IV vitamin C....

Has the high dose IV vitamin C had any detrimental effects on your kidneys (i.e. kidney stones, decreases in GFR, increase in BUN and/or creatinine)? The reason why I ask is because I tried taking liposomal vitamin C and it really did a number on my kidneys. I stopped taking it and my kidney numbers (GFR/BUN) improved. I am wondering if high dose IV vitamin C would have same effect as liposomal vitamin C.

Any thoughts on this....

Thank you!

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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung

User avatar
beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: High Dose IVC

Postby beach sunrise » Thu Oct 20, 2022 11:19 am

I do not know about the carrying process of the liposomal. I take a powdered form stirred in with water on days I do not take IVC.
Maybe Rp will see this and chime in.
The types of C I take has only had benefit with bloodwork.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

rp1954
Posts: 1621
Joined: Mon Jun 13, 2011 1:13 am

Re: High Dose IVC

Postby rp1954 » Thu Oct 20, 2022 3:40 pm

Liposomal C is a different creature than what most have historically used, containing sodium ascorbate some ethyl alcohol and lecithin.

Historically, some doctors used vitamin C to dissolve or resolve three of five kinds of kidney stone.

The much rumored vitamin C- oxalate stone typically reflect pre-exisiting problems of urine stasis or prior kidney damage/failure or a stone former. Calcium oxalate solubility and stone formation is altered by more water, more citric acid content, magnesium, more vitamin B6 and medically, methylene blue. A lot of the original kidney stone problems may trace to disturbed gut bacteria that are supposed to clear the oxalate in the gut and diffuse "backwards" from higher levels in the blood.
https://www.mv.helsinki.fi/home/hemila/ ... plNutr.pdf

Certainly prior kidney problems mean work with a relevant experienced doctors. I would suggest Riordan Clinic for IV vitamin C '/ kidney questions.
Last edited by rp1954 on Thu Oct 20, 2022 11:09 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 to almost nothing mid 2018, mostly IV C

utahgal7
Posts: 96
Joined: Fri Sep 11, 2020 12:04 pm

Re: High Dose IVC

Postby utahgal7 » Thu Oct 20, 2022 4:46 pm

Thanks beach and rp for the helpful advice!!!

Prior to cancer diagnosis, I didn't have any kidney issues. Now, I have Stage I kidney disease. The oral/IV contrast used for scans certainly hasn't helped my kidneys. CAPOX was also tough on my kidneys too. I have to be really careful now with the supplements that I take, diet, etc.
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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung

rp1954
Posts: 1621
Joined: Mon Jun 13, 2011 1:13 am

Re: High Dose IVC

Postby rp1954 » Thu Oct 20, 2022 11:49 pm

utahgal7 wrote:Prior to cancer diagnosis, I didn't have any kidney issues. Now, I have Stage I kidney disease. The oral/IV contrast used for scans certainly hasn't helped my kidneys. CAPOX was also tough on my kidneys too. I have to be really careful now with the supplements that I take, diet, etc.

Yes, a serious cancer diagnosis typically means a lot of chemo wear and tear on organs. This is part of why we made a lot of up front efforts to rationalize a therapeutic index, risk+damage to benefits. Scans with contrast, both CT and MRI, have "mileage bonuses". Likewise chemo, we avoided oxi-, iri- and Avastin, stuck to the 5FU issues. We were very cautious on supplements and the answers developed were often a little different than supposed but included some megadoses in advised combination with other necessary supplements e.g. megavitamin D toxicity is in reality mostly calcium related toxicity requiring close attention to vitamin K2 (too little), magnesium (too little), phosphorus (too much), calcium (too much) and D2 (wrong kind).

Different stages of kidney disease have different formulation advisories.

With regards to kidney function, vitamins B1, B2, P5P and coQ10 were on my list.
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 to almost nothing mid 2018, mostly IV C

utahgal7
Posts: 96
Joined: Fri Sep 11, 2020 12:04 pm

Re: High Dose IVC

Postby utahgal7 » Fri Oct 21, 2022 9:03 am

Thanks rp for your immense wisdom! I really appreciate it!
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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: High Dose IVC

Postby prayingforccr » Fri Oct 21, 2022 9:56 am

24 oz of chamomile tea per day lowered my creatinine considerably, indicating improved kidney function.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

utahgal7
Posts: 96
Joined: Fri Sep 11, 2020 12:04 pm

Re: High Dose IVC

Postby utahgal7 » Fri Oct 21, 2022 12:56 pm

prayingforccr -

Thank you for the advice. I drink a lot of green tea. I will have to try chamomile tea. I was able to get control of my creatinine numbers by restricting protein. I am having problems with eGFR. As you know, blood pressure plays a role with eGFR along with salt intake. Salt is in EVERYTHING!!!!!! I don't like having to watch EVERY bite of food that I eat. Takes all of the fun out of meals.
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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung


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