Update on supplements with some history

[mpbser]

In late 2016, my husband started to appear very sick. He was pale, puffy, short of breath, and extremely obese. Without really knowing what was going on and without health insurance, I feared that he was in really bad cardiovascular health. So, I started giving him kyolic garlic, omega 3s (DHA and EPA), curcumin 95, vitamin D, magnesium malate, vitamin C, and zinc with carnosine (though I discontinued that when we found out he was severely anemic because zinc can interfere with iron absorption, and then just giving him carnosine while we worked on his red blood cells), in addition to his usual Men's Total Health multivitamin (which is excellent although the formula was to be changed about a half year or so later). Kyolic garlic, omega 3s (DHA and EPA), curcumin, and vitamin D are anti-inflammatories. Magnesium is important to all cellular function. Vitamin C is an antioxidant. However, orally, greater than 1 gram of vitamin C becomes oxidative, so we stick to 500 mg/day.

In February 2017, he was diagnosed with congestive heart failure which was caused by edema which was caused by anemia which was caused by the occult bleeding that had been going on in the colon cancer’s invasion of which he had been unaware. He was on the verge of having a massive coronary event and on the verge of death. Had he not gone to the hospital, I am certain he would have had a stroke. A CT scan done in the ER showed the primary tumor in his descending colon (radiologist missed a second tumor that was there at the transverse-ascending colon juncture). Now knowing that he was anemic and had colon cancer, I dropped the zinc (see above) and continued the carnosine. Carnosine helps with the mucosal lining of the gastrointestinal system. His congestive heart failure cleared up and was resolved by the summer 2017.

I did some research and discovered scientific support for the use of cimetidine pre- and post- surgery for helping prevent metastatic spread. I got my husband’s doctor to prescribe 800 mg/day for him. It’s available over the counter as “Tagamet.” He has taken it since spring 2017.

I can’t really remember exactly what supplements he was taking between then and now, except that I added graviola and milk thistle extract to the mix. The only concern I had about that was the small chance of developing Parkinsons from long term use of graviola, so I gave him just one capsule a week. I dropped it after the bottle ran out a couple months ago. Milk thistle is known for its liver protective properties.

That brings us to the present. Presently, he takes Men's Total Health multivitamin, vitamin D 5000 iu, curcumin complex, zinc, decaffeinated green tea extract, echnicaea, milk thistle extract, magnesium taurate, modified cirtus pectin, and EFA & DHA.

PLUS, I recently added Life Extension Se-Methyl L-Selenocysteine, Natural Factors Dandelion Root Extract, Life Extension Optimized Quercetin, Jarrow Formulas OPCs Plus 95 Grape Seed Extract, and MAAC10 - Trans Resveratrol 500mg Very High Potency Formulation (99% Purified MICRONIZED Trans-Resveratrol Extract + BioPerine for Superior Absorption) (2x 250mg Capsules 60ct). These compounds are all components of Cellgevity which has scientific backing, although mega doses are to be taken with extreme caution.

I will be adding n-acetylcysteine as soon as it arrives. I placed an order yesterday. It’s a precursor to glutathione. Healthy cells are metabolized the “normal” way, e.g. using glutathione to produce ATP. I had previously given him straight glutathione in 2017 between his August 2017 colon surgery and fall 2017 chemo. But since then, I have read that direct glutathione supplementation is pretty much pointless, in the same way that folic acid supplementation is pointless for me. I have a heterozygous genetic disorder that makes me predisposed to hypercoagulation. Long story…

Lastly, I will be doubling his vitamin D dosage in about a week and will continue that for about a month post-surgery. There is plenty of scientific support for vitamin D supplementation in colon cancer patients and it is the one supplement recommended by NCCN guidelines. The reason I will double it to 10,000 iu is because this dosage is currently being studied at Dana Farber: https://clinicaltrials.gov/ct2/show/NCT ... =US&rank=1

His first liver tumor, the one removed in January 2018, was rather quick growing at a rate of .5 cm per month. He had little opportunity for significant supplementation prior to that time due to chemo in fall 2017. This recurrence he currently has is slow growing and actually at bay. I credit the supplements for this as I can't see any other reason for it.

Hope this helps those people interested in supplementation.

[Utwo]

mpbser, you seem very knowledgeable and enthusiastic about different supplements.
What do you think about shiitake extract?

My wife is very enthusiastic about it because her friend told her.
To save my energy I just take whatever my wife gives me.
Resistance is futile.

[mpbser]

Haha re: resistance. It took my husband nearly two years to finally get fully on board with the supplements I dish out to him daily!

I don't know anything about any mushrooms except that I like to eat them, especially shiitake (yum!!!!! they are awesome baked with oil, carrots, and low sodium soy sauce!)

My favorite place for information is http://www.greenmedinfo.com/ I am sure there will be useful information there on shiitake extract.

[mpbser]

I just noticed your signature. It looks incomplete: 06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder and a lymph node

Funny stuff in the 6/2017 CT but no follow up? No MRI? No PET?

[rp1954]

Without any CA199 data and Kras wild, you may not have a basis for the long term cimetidine tx. The papers are pretty clear ultralow CA199 for 7-10% of advanced CRC patients means long term cimetidine usage simply will not be beneficial and any drug still has some drag if not contraindications. In the marked CRC pool, is another 20-25% of low CA199+low CSLEX1 tumor tissue stainers that won't benefit either. The Japanese tissue data suggest that CA199+CSLEX1 stains are potentially about as good as it gets in companion markers, perhaps almost quantitative predictors, where even one CA199 blood test is logical step 1.

Along an axis of high HIF-1a (--->LDH4, LDH5), high CA199, KRAS/BRAF mutant cancer cells, that doctor would be simply wrong about (IV) vitamin C. High dose vitamin C plus others can make metronomic 5FU work better for such mCRC cells. This is part of why my wife has escaped oxi-, iri-, Avastin all these years, despite some dire predictions even with them. For your husband, no one knows so much, datawise.

Btw, which / how many months has Michael had 80+ milligrams of aspirin?

[O Stoma Mia]

mpbser -

Just a note to say that for whatever supplements we decide to use, there is an obligation to check if they are in fact compatible with the medications and other supplements that we are already using.

There is an on-line checker available for verifying this:

Drug Interactions Checker - For Drugs, Food & Alcohol
https://www.drugs.com/drug_interactions.php

There are some supplements that seem totally innocuous at first glance, but turn out to be highly reactive with certain medications,foods, or other supplements.

I'll just give one example: There are herbal products that are advertised for helping with insomnia or for alleviating anxiety. If you look up some of these, you will find that they are incompatible with certain types of anesthesia used in surgery. They have an interaction that enhances or amplifies the sedative effect of the anesthesia. Thus if a patient decides that he/she is going to have a cup of such tea or potion the night before a surgical operation just to calm their nerves and get a good night's sleep, it might turn out that the Propofol anesthesia administered the next day will be amplified to such an extent that it will be an overdose.

Interactions between ... drugs
...
Applies to: Propofol, St. John's Wort

Before getting anesthesia with Propofol, tell your doctor if you are taking St. John's Wort. Products containing St. John's wort may prolong the sedation caused by some drugs used in general anesthesia. Your doctor may want you to stop taking St. John's wort for at least 5 days before you undergo surgery. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.
Ref: https://www.drugs.com/interactions-check.php?drug_list=2106-0,1954-0

[mpbser]

I have listed them all on his medication list. MSK is aware.

[Utwo]

I just noticed your signature. It looks incomplete

My signature already reached maximum allowed size of 512 bytes.

A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder and a lymph node
Funny stuff in the 6/2017 CT but no follow up? No MRI? No PET?

Again, I ran out of space.
This stuff was incrementally documented on different CT scan reports. The most frustrating was to see some observations appearing on the latest CT scan report, although they should have been noticed and reported earlier.

Latest "funny stuff" was:
1) small lung nodules detected by low dose chest scan (regular CT scan has not covered chest and I specifically asked for one more).
3 month later on a similar follow-up low dose chest scan these nodules were of about the same size
a year later on a regular CT scan these nodules were also of about the same size
2) one "oversized" lymh node was reported by the latest CT scan and was close to anostomosis;
it happened that it also was present on a previous CT scan.
I was told that it was an after-effect of a leak and infection.

Stuff that was discovered in liver, kidney, arteries and gallbladder apparently was of less concern to a doctor.

At the same time seeing a white circles of calcified plaques on my coronary arteries on CT san slices/layers was very motivational.
It led to significant change of my diet and to substantial increase of how much time I spend exercising.

[mpbser]

utwo, the "funny stuff" doesn't sound alarming, so that's good! I look at every word of my husband's scans and the only thing that sticks out to me right now is “wedge-shape hyperenhancing areas in the right hepatic lobe consistent with perfusional anomalies.” I asked his MSK liver surgeon if he had any abnormalities that would interfere with perfusion of the HAI chemo to the entire liver and he said no. However, that MRI note from MGH appears to say otherwise. I have to double check on February 25th when we have the pre-surgery consultation.

rp1954, he has been on aspirin ever since his cardiologist prescribed it which I believe was summer 2017. I had my husband bring him a scientific journal article on aspirin resistance when he saw him last month. I guess they rolled their eyes at each other about it from what my husband said when I asked how his doctor responded. Regarding cimetidine, thanks for the information.

[mpbser]

My husband is on a supplement hiatus at this time as he is doing 8 months of HAI FUDR and Folfiri.

In the meantime, I am studying as much as I humanly can. I recently discovered this bit of information that might be of interest to those who use curcumin:

Curcumin led to the survival of colon cancer stem cells. At optimal concentrations, curcumin greatly reduced expression levels of stem cell markers. Unexpectedly, curcumin increased proliferation and autophagic survival of CSCs. Spheroid cultures were disintegrated by curcumin in vitro but regrew within 30 to 40 days of cisplatin treatment. This finding proposes the survival benefit from autophagy, permitting longterm persistence of colorectal cancer.

This passage is from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4497670/

It sounds so contradictory that I am now going to read the article about the referenced study:
Kantara C, O’Connell M, Sarkar S, et al. Curcumin promotes autophagic survival of a subset of colon cancer stem cells, which are ablated by DCLK1-siRNA. Cancer Res. 2014;74:2487–2498.

[mpbser]

On another thread, I noted that the one liver met my husband had (discovered early December 2018) shrank as follows:

1/11/19 MRI: 1.3 cm, "slightly increased" from 12/3/18 .9 cm. (Having looked at the MRI images myself, I visually confirmed that the lesion was 1.3 cm.)
2/25/19 MRI: 1.1 cm and "unchanged" but actually decreased in size by .2 cm
3/7/19 Pathology: 1.1 cm at greatest dimension

In January and February, my husband was taking the following:

2-a-day, vitamin D 5000 iu, curcumin complex, zinc, decaffeinated green tea extract, echnicaea, milk thistle extract, magnesium taurate, modified citrus pectin, EFA & DHA, Se-Methyl L-Selenocysteine, Natural Factors Dandelion Root Extract, Life Extension Optimized Quercetin, Jarrow Formulas OPCs Plus 95 Grape Seed Extract, and MAAC10 - Trans Resveratrol 500mg Very High Potency Formulation (99% Purified MICRONIZED Trans-Resveratrol Extract + BioPerine for Superior Absorption) (2x 250mg Capsules 60ct), n-acetylcysteine, 42 fruits & vege, Pomegranate extract, aloe, probiotics, digestive enzymes, Chlorella, Chlorophyllin, Spirulina, Kyolic Garlic, acetyl-l-carnitine

[radnyc]

In my research there are only three things readily available that have shown to be effective in keeping from recurring. VITAMIN D, ASPIRIN and PHYSICAL EXERCISE. This can be checked by doing a PUBMED or google scholar database search.

Vitamin D blood levels have to be optimal, around 5000/iu at least daily. And make sure is D3 not D2 which is quite ineffective for us. This is what most people get prescribed by doctors, D2, it’s so weak that the dosages are like 50000! Ridiculous! Make sure it’s D3!

Aspirin either a daily low dose one or a regular enteric every three days.

Exercise, you don’t have to be an Olympic athlete, but try to get off your arse at least a couple hours daily!

I throw in milk thistle and corioulos mushroom capsules as there is some evidence for them. The main issue is making sure the product quality, where’s it from, who makes it!

[ginabeewell]

My husband is on a supplement hiatus at this time as he is doing 8 months of HAI FUDR

Just curious if you had a discussion with Dr Kemeny about supplements? I’ve continued a few of mine but wanted to talk to her about resuming some of our Chinese herbs and kind of nervous to bring it up!

[mpbser]

No, not really. We listed all the supplements that he was taking when we first came to MSK and no one said a thing about them to us. It wasn't until mid-March (after March 7th surgery and after chemo commenced April 1st) that one of her nurses went over the list with us. In short, my husband was given the green light to stay on a "multi-vitamin," vitamin D at 5000 iu, magnesium (after I repeatedly reminded the nurse that he is deficient without supplementation), and green tea. Everything else was stricken. No discussion. Even if I was to bring in evidence of efficacy, I don't think she would even welcome a conversation about it. I base that on the experience we had when we requested a liquid biopsy. Her mind is simply closed off to things outside her wheelhouse.

[mpbser]

What Chinese herbs are you considering resuming?