High Dose Vitamin C Questions

Please feel free to read, share your thoughts, your stories and connect with others!
dhamptonii
Posts: 8
Joined: Sun Dec 30, 2018 6:58 pm

High Dose Vitamin C Questions

Postby dhamptonii » Tue Feb 19, 2019 5:48 pm

This is my first post to Colon Talk. My wife was diagnosed, just before Christmas 2018, with stage IV colon cancer on her left side. My wife has a couple mets in her liver. We reside in Utah and have started chemo (folfox) but have already reached out to Dr. Kemeny in NYC. We also understand that Dr. Fakih at City of Hope is doing an HAI pump trial (anyone familiar with this doctor?). As we currently understand her cancer genetics she is KRAS and BRAF wild.

I have a question about high dose Vitamin C infusions (HDVC): I have searched the forum but there isn’t much discussed recently (that I found). I read a couple things by rp1954 and Maia posted in 2015. Do people have thoughts on this, experience with it, research or can you point me to forum posts? I have read a number of studies on this and most seem to point to positive benefits. The only negative was actually found on cancer.org’s website. [https://www.cancer.gov/about-cancer/treatment/cam/patient/vitamin-c-pdq]

It says:
“Patients with refractory metastatic colorectal cancer or metastatic melanoma were treated with IV vitamin C combined with other drugs. The treatment had no anticancer effect, the tumor continued to grow during treatment, and patients had serious side effects. These studies did not have a comparison group, so it is unclear how much the IV vitamin C affected the side effects.”

My wife suffers from nausea, GI issues, and severe fatigue which we assume are chemo related. I’ve heard that HDVC can potentially help to eliminate those side-effects. 
Beyond that, some studies want to attribute anti-cancer properties which would be a bonus.


We raised the idea to her oncologist and got push back. He stated the vitamin C protects the cancer cell. I’ve read about that idea but it seems the high dose nature of the infusion might act differently than a low dose vitamin C? I’ve asked him for the studies that he read that support that idea. I hope to see what he can provide later this week
. Has anyone ran into this opposition before or can validate it?

A lot of questions in there. Any insight, help or direction is very much appreciated.

rp1954
Posts: 1857
Joined: Mon Jun 13, 2011 1:13 am

Re: High Dose Vitamin C Questions

Postby rp1954 » Tue Feb 19, 2019 8:11 pm

dhamptonii wrote:As we currently understand her cancer genetics she is KRAS and BRAF wild.

What is her CA199, LDH, HgbA1C hsCRP or ESR ? The more blood data you have, the better you can tune these things.

I have a question about high dose Vitamin C infusions (HDVC)….. I have read a number of studies on this and most seem to point to positive benefits. The only negative was actually found on cancer.org’s website. [https://www.cancer.gov/about-cancer/treatment/cam/patient/vitamin-c-pdq]

Conventional medicine's view has been greatly distorted by Mortel's biases (70s-80s) and fellow travellers, where 35 yrs confusion followed with little science achieved or retained. Very slow progress, with limited clinical diffusion.

“Patients with refractory metastatic colorectal cancer or metastatic melanoma were treated with IV vitamin C combined with other drugs. The treatment had no anticancer effect, the tumor continued to grow during treatment, and patients had serious side effects.

Some cancer cell lines do not respond to vitamin C; some very nasty cell lines do respond, especially to particular cocktails. What's missing is the support to tell who is who, and exactly what will work. In our lab's tissue results, 5FU+C+MK4 worked better than any conventional chemo cocktail (5FU,-iri, -ox, gem-) for my wife but more mild adjuncts were needed to keep things going our way.
My wife suffers from nausea, GI issues, and severe fatigue which we assume are chemo related. I’ve heard that HDVC can potentially help to eliminate those side-effects.

Yes, IV vitamin C can ameliorate many chemo and cancer related problems but it is not a panacea. IV vitamin C works best with some skill and insight, with cocktails. Some alternative IV vitamin C cocktails for other medical problems are contraindicated for successful cancer uses.

Beyond that, some studies want to attribute anti-cancer properties which would be a bonus.

Studies that I've seen associate C's properties with HIF-1a levels, histamine levels, KRAS/BRAF mutation, particular inflammation, particular cell lines, collagen formation, sugar transport, storage and metabolism, and indirectly, VEGF-A formation.
We raised the idea to her oncologist and got push back. He stated the vitamin C protects the cancer cell. I’ve read about that idea but it seems the high dose nature of the infusion might act differently than a low dose vitamin C? I’ve asked him for the studies that he read that support that idea. I hope to see what he can provide later this week

There are a number of facets to the issue. He's already told you that he is out of the immediate information loop about what likely works and what doesn't.
Has anyone ran into this opposition before

Sure, frequently and often condesendingly. In 2010, it was a quick and dirty test whether an MD was "conventional" or "alternative". In the case of the former, I simply moved on to other, more useful topics. Much debate wastes your time, good will, credibility and money. Spend your money on their best skills and specialized information, not their weakest ones.
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

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: High Dose Vitamin C Questions

Postby Pyro » Tue Feb 19, 2019 8:57 pm

Its considered alternative and it will be dismissed by most, for good reason.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: High Dose Vitamin C Questions

Postby Utwo » Tue Feb 19, 2019 10:50 pm

Vitamine C is water soluble and rather harmless. It doesn't accumulate in your body and its excess is excreted by your kidneys.
Quite a few people (including me) acted as guinea pigs consuming a lot of vitamin C to validate hypothesis of Linus Pauling that vitamin C is effective against common cold.
AFAIK there was no negative effect attributed to high vitamin C doses.

So you may use high vitamin C doses if you want. At the same time other placebos may be as effective as vitamin C.

https://www.quackwatch.org/01QuackeryRelatedTopics/pauling.html
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: High Dose Vitamin C Questions

Postby Lee » Wed Feb 20, 2019 2:31 am

rp1954 wrote:
dhamptonii wrote:As we currently understand her cancer genetics she is KRAS and BRAF wild.

What is her CA199, LDH, HgbA1C hsCRP or ESR ? The more blood data you have, the better you can tune these things.

I have a question about high dose Vitamin C infusions (HDVC)….. I have read a number of studies on this and most seem to point to positive benefits. The only negative was actually found on cancer.org’s website. [https://www.cancer.gov/about-cancer/treatment/cam/patient/vitamin-c-pdq]

Conventional medicine's view has been greatly distorted by Mortel's biases (70s-80s) and fellow travellers, where 35 yrs confusion followed with little science achieved or retained. Very slow progress, with limited clinical diffusion.

“Patients with refractory metastatic colorectal cancer or metastatic melanoma were treated with IV vitamin C combined with other drugs. The treatment had no anticancer effect, the tumor continued to grow during treatment, and patients had serious side effects.

Some cancer cell lines do not respond to vitamin C; some very nasty cell lines do respond, especially to particular cocktails. What's missing is the support to tell who is who, and exactly what will work. In our lab's tissue results, 5FU+C+MK4 worked better than any conventional chemo cocktail (5FU,-iri, -ox, gem-) for my wife but more mild adjuncts were needed to keep things going our way.
My wife suffers from nausea, GI issues, and severe fatigue which we assume are chemo related. I’ve heard that HDVC can potentially help to eliminate those side-effects.

Yes, IV vitamin C can ameliorate many chemo and cancer related problems but it is not a panacea. IV vitamin C works best with some skill and insight, with cocktails. Some alternative IV vitamin C cocktails for other medical problems are contraindicated for successful cancer uses.

Beyond that, some studies want to attribute anti-cancer properties which would be a bonus.

Studies that I've seen associate C's properties with HIF-1a levels, histamine levels, KRAS/BRAF mutation, particular inflammation, particular cell lines, collagen formation, sugar transport, storage and metabolism, and indirectly, VEGF-A formation.
We raised the idea to her oncologist and got push back. He stated the vitamin C protects the cancer cell. I’ve read about that idea but it seems the high dose nature of the infusion might act differently than a low dose vitamin C? I’ve asked him for the studies that he read that support that idea. I hope to see what he can provide later this week

There are a number of facets to the issue. He's already told you that he is out of the immediate information loop about what likely works and what doesn't.
Has anyone ran into this opposition before

Sure, frequently and often condesendingly. In 2010, it was a quick and dirty test whether an MD was "conventional" or "alternative". In the case of the former, I simply moved on to other, more useful topics. Much debate wastes your time, good will, credibility and money. Spend your money on their best skills and specialized information, not their weakest ones.


I am a non expert here, butt this person, pr1954. you REALLY want to give him a 2nd look/opinion at!!! At the end of the day, he tends to know his stuff, he thinks outside the box (my humble opinion), butt a very detailed thinker/ expert who is probably on to something at a end of the day. He's been around here for a very long time for a very good reason, he tends to knows his stuff. Listen to him. Just my humble opinion!!
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: High Dose Vitamin C Questions

Postby Pyro » Wed Feb 20, 2019 8:04 am

He speaks in circles and gives no specifics, I wouldn’t listen at all. These people are dangerous, dangerous for people looking for hope in a dark situation.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: High Dose Vitamin C Questions

Postby hiker » Wed Feb 20, 2019 8:11 am

dhamptonii wrote:This is my first post to Colon Talk. My wife was diagnosed, just before Christmas 2018, with stage IV colon cancer on her left side. My wife has a couple mets in her liver. We reside in Utah and have started chemo (folfox) but have already reached out to Dr. Kemeny in NYC. We also understand that Dr. Fakih at City of Hope is doing an HAI pump trial (anyone familiar with this doctor?). As we currently understand her cancer genetics she is KRAS and BRAF wild.


Hey dhamptonii,

My suggestion, for what it's worth, is to push for Dr. Kemeny. Since your wife is KRAS wild and only has liver mets, she would most likely qualify for Dr. Kemeny's trial involving the Codman HAI pump and systemic chemo with added Vectibix. I was part of that trial. The woman is amazing. As far as I'm aware, MSK is the only facility that still has Codman pumps.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

User avatar
GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: High Dose Vitamin C Questions

Postby GrouseMan » Wed Feb 20, 2019 9:23 am

Utwo wrote:Vitamine C is water soluble and rather harmless. It doesn't accumulate in your body and its excess is excreted by your kidneys.
Quite a few people (including me) acted as guinea pigs consuming a lot of vitamin C to validate hypothesis of Linus Pauling that vitamin C is effective against common cold.
AFAIK there was no negative effect attributed to high vitamin C doses.

So you may use high vitamin C doses if you want. At the same time other placebos may be as effective as vitamin C.

https://www.quackwatch.org/01QuackeryRelatedTopics/pauling.html


Ya - Didn't save Linus Pauling did it? He was one of my Chemistry Hero's! Brilliant in some respects not so much in others.

https://www.quackwatch.org/01QuackeryRe ... uling.html

Just goes to show that even with two Nobel Prizes - your not right all the time.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: High Dose Vitamin C Questions

Postby mpbser » Wed Feb 20, 2019 11:06 am

"As far as I'm aware, MSK is the only facility that still has Codman pumps."

It doesn't any longer. The very last of the Codman pumps at MSK were used at the beginning of February. My husband was supposed to get one. Due to a pause in the Medtronic-Codman adaptation trial, the Codmans got placed in people scheduled for surgery during the study hiatus, leaving none left.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

FightCRC
Posts: 56
Joined: Fri May 25, 2018 10:39 pm

Re: High Dose Vitamin C Questions

Postby FightCRC » Wed Feb 20, 2019 11:57 am

A couple of followup points:

-- Sorry to say, there are no more Codmans left, not even for Dr. Kemeny's trial.

-- We consulted with both City of Hope and MSK for the HAI pump last year. Our first choice was Dr. Kemeny and MSK. If she didn't accept us as patients, our backup was City of Hope. Can further elaborate it you like.

-- I would pay very close attention to what rp1954 says. You don't have to fully understand, you don't have to agree 100% with what he posts...but needs to be acknowledged that his wife has survived with Stage IV CRC since 2010. It's unlikely due solely to luck.

dhamptonii
Posts: 8
Joined: Sun Dec 30, 2018 6:58 pm

Re: High Dose Vitamin C Questions

Postby dhamptonii » Wed Feb 20, 2019 12:18 pm

mpbser wrote:"As far as I'm aware, MSK is the only facility that still has Codman pumps."

It doesn't any longer. The very last of the Codman pumps at MSK were used at the beginning of February. My husband was supposed to get one. Due to a pause in the Medtronic-Codman adaptation trial, the Codmans got placed in people scheduled for surgery during the study hiatus, leaving none left.


We were told by my wife's oncologist PA that she was KRAS wild. I asked for the report and finally got it yesterday. She is KRAS mutant. Bummer and frustrating. Is Kemeny doing the trial with Codman pumps or the Medtronic pumps? Will Medtronic pumps be available in the future? Arae KRAS mutant eligible or does something about the mutation exclude them?

dhamptonii
Posts: 8
Joined: Sun Dec 30, 2018 6:58 pm

Re: High Dose Vitamin C Questions

Postby dhamptonii » Wed Feb 20, 2019 12:20 pm

FightCRC wrote:A couple of followup points:

-- Sorry to say, there are no more Codmans left, not even for Dr. Kemeny's trial.

-- We consulted with both City of Hope and MSK for the HAI pump last year. Our first choice was Dr. Kemeny and MSK. If she didn't accept us as patients, our backup was City of Hope. Can further elaborate it you like.

-- I would pay very close attention to what rp1954 says. You don't have to fully understand, you don't have to agree 100% with what he posts...but needs to be acknowledged that his wife has survived with Stage IV CRC since 2010. It's unlikely due solely to luck.


I would love to know more about City of Hope. We've already had a very high level conversation with Dr. Kemeny's office in early January. She wants us to do several treatments and then a scan and report back to her. If pumps aren't available is City of Hope a good alternative?

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: High Dose Vitamin C Questions

Postby mpbser » Wed Feb 20, 2019 12:43 pm

"needs to be acknowledged that his wife has survived with Stage IV CRC since 2010. It's unlikely due solely to luck."

That's right and the only chemo was Xeloda. Definitely has done things right.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

dhamptonii
Posts: 8
Joined: Sun Dec 30, 2018 6:58 pm

Re: High Dose Vitamin C Questions

Postby dhamptonii » Wed Feb 20, 2019 1:27 pm

rp1954 wrote:What is her CA199, LDH, HgbA1C hsCRP or ESR ? The more blood data you have, the better you can tune these things.


Do I ask her doctor to requisition these specific levels? I presume they aren't common and I should ask the PA when we go in today for a lab order? She has her 4th treatment today and starts Avastin.

rp1954 wrote:Some cancer cell lines do not respond to vitamin C; some very nasty cell lines do respond, especially to particular cocktails. What's missing is the support to tell who is who, and exactly what will work. In our lab's tissue results, 5FU+C+MK4 worked better than any conventional chemo cocktail (5FU,-iri, -ox, gem-) for my wife but more mild adjuncts were needed to keep things going our way.


How did you get the lab tissue results? Is that something I can ask for? Would they be in the genetics report I just got?

rp1954 wrote:
Yes, IV vitamin C can ameliorate many chemo and cancer related problems but it is not a panacea. IV vitamin C works best with some skill and insight, with cocktails. Some alternative IV vitamin C cocktails for other medical problems are contraindicated for successful cancer uses.


I'm all ears. I'll track down and get whatever data is helpful.

rp1954 wrote:Studies that I've seen associate C's properties with HIF-1a levels, histamine levels, KRAS/BRAF mutation, particular inflammation, particular cell lines, collagen formation, sugar transport, storage and metabolism, and indirectly, VEGF-A formation.


I've found out the initial report to us that she was KRAS wild was incorrect. She is KRAS mutant with the specific aberration of Gly12Asp. Its says the other aberrations are APC and TP53. I have yet to understand the implication of those other 2 aberrations.

We raised the idea to her oncologist and got push back. He stated the vitamin C protects the cancer cell. I’ve read about that idea but it seems the high dose nature of the infusion might act differently than a low dose vitamin C? I’ve asked him for the studies that he read that support that idea. I hope to see what he can provide later this week.

rp1954 wrote:There are a number of facets to the issue. He's already told you that he is out of the immediate information loop about what likely works and what doesn't.

Has anyone ran into this opposition before


rp1954 wrote:Sure, frequently and often condesendingly. In 2010, it was a quick and dirty test whether an MD was "conventional" or "alternative". In the case of the former, I simply moved on to other, more useful topics. Much debate wastes your time, good will, credibility and money. Spend your money on their best skills and specialized information, not their weakest ones.


I like this. Will use.

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: High Dose Vitamin C Questions

Postby Pyro » Wed Feb 20, 2019 3:38 pm

mpbser wrote:"needs to be acknowledged that his wife has survived with Stage IV CRC since 2010. It's unlikely due solely to luck."

That's right and the only chemo was Xeloda. Definitely has done things right.


And that is an absolute touchdown.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 156 guests