Evidence used for my decision process with (IMO)

[Robgump]

In answer to your questions (continued)

I have no insurance (for the last two years), so I keep lines of communication open with current researchers and practitioners in the field. occasionally I have vetted a specialist or two and will make an appointment to ask questions about current research. my cost is nil. The conventional approach can be cost prohibitive and usually results in standard answers due in part to the work load imposed. it is not very productive to talk to anyone that is running a "chemo mill".

Pharmacists (have given me wrong information) and doctors I talk with generally are ignorant of the specifics, say, Imbruvica clearance. Even prescribing moderate CYP inhibitors to be taken concurrently which can cause clearance problems leading increased or amplified side effects. AbbVie (or Pharmacyclics, Johnson&Johnson) will not answer technical questions if you are a patient. Sales agents for AbbVie just visited with my oncologist and was just promoting and not giving practical info and ad infinitum...

my diet/nutritional is run through my oncologist as a matter of routine and he seems to be impressed with my "fantastic response!" my WBC goes down to 5K for (just "sleeping") about 5 months then climbs to 50k and back down. 90% tumor load since 2012. As an aside, while at MD Anderson they were trying to see how "aggressive" the CLL was before doing chemo. My white blood cells were dropping 2,500 every 24 hours due to my taking EGCG and curcumin primarily. A few weeks later when I did my first FCR, my dropped 90% to near normal, about 9k. The director of oncology said he was impressed. I search the papers for clues and implement what I can on my limited budget, compounding my own supplements from bulk ingredients from reputable sources. cost per year about $1000. Efficacy and safety are related by the papers themselves or not. Safety of the supplements themselves (as food or by themselves), sometimes affect the CYP and other systems (hence their effect) and can interact (i.e. grapefruit effect, St. John's wort etc...) with concurrent medications. Caution is advised. Based on my experience, looking up clearance/activation modalities can be tedious, multiple source references can give you as much information as an average pharmacist would have access to (I certainly have been able to stay on the safer side of things and correcting errors in prescribed meds by my physicians). Remember, they "practice" and are not always right.

Some of the studies I link, will have statistical info, some will not. Citations to co-morbidities may have to be searched out. I will endeavor to provide as time allots.

I live in Texas. See my bio: healthunlocked.com/user/rob...

The following articles I have read completely and will post articles as I read.

General interest:

ncbi.nlm.nih.gov/pmc/articl...

"Clinical development of CAR T cells—challenges and opportunities in

translating innovative treatment concepts"

ncbi.nlm.nih.gov/pmc/articl...

"Cancer cachexia, mechanism and treatment"

(cachexia can be a factor affecting survival in CLL)

ncbi.nlm.nih.gov/pubmed/154...

"Nonsteroidal anti-inflammatory agents differ in their ability to suppress NF-kappaB activation, inhibition of expression of cyclooxygenase-2 and cyclin D1, and abrogation of tumor cell proliferation"."...curcumin, celecoxib, and tamoxifen are the most potent anti-inflammatory and antiproliferative agents of those we studied... "

(Related to CLL through inflammation mechanisms)

themedicalbiochemistrypage....

(Really good source for basic understanding of inflammation related to CLL by TNF and other)

ncbi.nlm.nih.gov/pubmed/250...

"Curcumin for the treatment of major depression"

(Depression can be a side effect of and real quality of life concern in CLL)

academic.oup.com/carcin/art...

"Curcumin sensitizes pancreatic cancer cells to gemcitabine by attenuating PRC2 subunit EZH2, and the lncRNA PVT1 expression"

ncbi.nlm.nih.gov/pmc/articl...

"Long Non-Coding RNAs in Haematological Malignancies "

I have had a few basal cell carcinoma come up which I have treated topically with sodium ascorbate. I had heard there were treatments with this on melanoma and other cancers. They were about 2.5-3cm across and they resolved in about 4 weeks! I later found this reference with a few excerpts for a quick review:

Vitamin C-

"With a metal ion, it forms a mineral ascorbate"... (I.e. Sodium or magnesium)

..."does not absorb UV light but exerts an UV-protective effect by neutralizing free radicals, while this effect is not seen with sunscreens"...

...."inhibits NFkB, which is responsible for the activation of a number of pro-inflammatory cytokines such as TNF-alfa, IL1, IL6 and IL8.[2,3] "...

... "is largely safe to use on a daily basis for long durations."

..."is best used after exposure to UV light and not prior."

"Once applied, Vit. C cannot be fully washed or wiped off the skin"

..."The half-life in the skin after achieving maximum concentration is 4 days. A persistent reservoir of Vit. C is important for adequate photoprotection, and can be achieved by regular 8-hourly applications."

ncbi.nlm.nih.gov/pmc/articl...

(Other adjuncts can increase bioavailability or time to optimal absorption levels i.e. Vitamin E, liposomes, etc... at a neutral pH.)

[newyork8]

Thank you. Wow 12 kids. Amazing. Speed read at 25k...what does that mean? You are not the guy that sent himself up on a rocket are you?

[Robgump]

You know, I learned to read when I was three and just took off. My wife and I didn't have a tv😊. (25k means 25,000 words per minute)

[SeymourB]

Rob -

What's your take on how much curcumin from supplements vs. food grade turmeric makes it to anywhere other than the gut?

Have you ever considered doing your own CBCs or other labs at home?

=seymour=

[Robgump in reply to SeymourB]

My CBC costs $11. "Labs at home", I have done manual CBC's before, is that what you are talking about?

Turmeric is of varying grade containing up to about 7% (most turmeric you buy in the stores as a spice is lighter colored and lower like 1-3%). I like Lakshmi brand turmeric is a dark "goldenrod" color, available at most Indian food shops here in the US. The problem is how to prepare it so that your body can use it as curcumins are NOT water soluble, which is why I prefer to use a liposome containing product (heated homo milk or cream) as a carrier. When you prepare a turmeric based curry it will generally form liposomes from the fat soluble curcumins during preparation that can be utilized. Not very efficient but better than nothing and though I do like a good curry, not every day. 95% curcuminoids used in whole fat milk (prepared as in previous post or prepared in my ultrasonic vat in Pyrex with fats, alcohol, pepper, lecithin and water) a 100 mg dose 2x/day is effective at relieving any pains I have from imbrutinib. I find if I don't take this every day I become susceptible to upper respiratory infections (known side effect). I want to try low dose naltrexone as it negates a large part of the suppression EBV has on immunity.

[SeymourB]

Yeah, I'd like to do manual CBCs in order to do more frequent tests to correlate to diet, exercise, and stress, and partly for the fun of it.

I have trouble with really tasty curries. Possibly it's onions and my biome. I always had trouble with mom's creole gravy, too.

I'll look up your previous post. I'm sure I'll have more questions.

=seymour=

[Robgump in reply to SeymourB]

Yeah, alliums have a nasty habit of suppressing bone marrow (in animals)but a little never hurt too much I guess. Food.. uh, supplements can still taste good right?

[SeymourB in reply to Robgump]

Onions aren't directly an immune thing for me, I think. Onions and fructans in general cause IBS symptoms for me, and probably some inflammation. Combine with a little oil, and I get an after-tasty GERD. It's dosage dependent. I try to use the green part of green onions. My wife grows it.

So, curries are something my tongue likes, but the rest of my system not so much. I use turmeric as a spice, and hopefully for its anti-inflammatory effect on the gut, which works at fairly low doses. But I can't say I have personal-in-vivo-proof. At the dose I take - maybe a teaspoon to a tablespoon of turmeric a day - I don't think it makes much of a dent in my immune system directly. But my hope is some reduction in inflammation turns the volume down on cytokines that stimulate B-cell growth. Again, I have no proof.

I eat turmeric on non-wheat toast made from Schar white bread, with a half teaspoon of cream cheese and a pinch of black pepper. Sometimes I'll add a dash of soy sauce or parsley and green onion for flavor.

[Robgump in reply to SeymourB]

Research on onions and reflux symptoms:

semanticscholar.org/paper/T...

A link with references, general information on onions (with a mention of BLOOD CLOTTING issues):

raw-food-health.net/Onion-T...