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 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.

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 "

[Robgump]

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

Curcumin analog affects Hsp90

researchgate.net/publicatio...

[hsouter]

Hello, Rob.

What markers, etc. does your type of CLL have?

Thanks.

Heather

[Robgump in reply to hsouter]

I have a profile as an introduction, healthunlocked.com/user/rob... I can only remember 3. High ZAP-70, unmutated IgVH, 11q. I will endeavor to find my labs for further info. In 2012, one of my doctors told me I wouldn't make it to 60th birthday, lol. Good for me that I don't believe in statistics.

[Robgump]

Caveat to curcumin supplements:

I have tested one that didn't seem to work in relieving side effects. NOW capsules when I broke them open, no solubility in absolute alcohol! All of the polyphenols are soluble in alcohol. Grains are hard and resemble a yellow sand and dust with no staining. Dilute chlorine 4% solution, no color change curcumin and turmeric will both change to a dark reddish color. Hydrogen peroxide test 35%, no bleaching occurs (this is caustic, will cause burns and DO NOT ATTEMPT THIS) .

All curcumin compounds will stain your fingers and will generally not wash off without heroic efforts. The powder should be finely divided and no hard grains and will stain, distinct taste and slight odor of turmeric.

Turmeric oil is from the leaves, not the root and is not yellow. I have not investigated this for any nutritive effects.

Cheers!

[Big_Dee]

This is Big D in reading your article I was a little confused if the ECGC and Curcumin was doing so well why did you need to take FCR. I find your results very interesting. I've read you have to be careful with the curcumin. It can not be combined with certain meds like aspirin or omeprazole, but it is good for inflammation. I know you also need to make sure and get a good quality one. Where did you get your Curcumin and ECGC and how much of each did you have to take also how often. I plan on also reading the links you have provided. Thanks for posting them.

[Robgump in reply to Big_Dee]

Caveat: You need to treat ALL supplements as medicine and perform due diligence.

In answer to the question (paraphrased): if the supplements I was taking was affecting my WBC (in a positive way) why did I proceed with chemo?

I guess it's part of the learning process, ignorance or that this can be part of the treatment.(MD Anderson did their best to dissuade me from taking the supplements, which included B12, selenium from Brazil nuts, 200 gm of raw kale, all the brightly colored veg that time would allot, 20 gm of freeze dried parsley,200 mcg B12 sublingual ,100 gm flax seed meal- omega 3's, 1000 mg ALA, 60,000 mg Vit D3, EGCG 95% 280 mg per day, 10 gm dried turmeric powder in a cup of hot milk with cinnamon, black pepper, thyme, allspice, rosemary, vanilla extract. I take a mix of curcumins now instead of powdered turmeric, dose is about 175 mg again in absolute alcohol mixed with whole milk and the "other eleven herbs and spices" 2x /day..

I have also included an assortment of anthocyanins, dark blue to purple pigments such as berries, ncbi.nlm.nih.gov/m/pubmed/2...

terpenes from whole foods or extracts, lemons, rosemary, thyme, cloves, fennel, anise, oregano, etc... researchgate.net/publicatio...

exp-oncology.com.ua/article...

ncbi.nlm.nih.gov/pubmed/201...

sorry, sometimes i get carried away and due to my untreated ADHD i tend to jump around... this seems to be another Bio.)

My first dose of FCR was in the ICU (treatment naive precautions) and crashed "down the well" (CRS, a classic Cytokine storm). The massive dose of benadryl and whatever pulled me up. That was the ONLY side effect during my treatments I received, no hair loss, no nausea, nothing. I did feel better as my white cell count dropped from 90K to 9K in one day 9 (the only day that I took alopurinol). The head of the Leukemia wing stated this was the first time in ten years at MDA that he had seen results like that, remission, with one dose of FCR. What am I to think?

Their general counsel recommended that i continue two more courses of chemo (liability). yeah, whatever, I felt a little buzz after each FCR for a couple of days (a mosquito landed on my arm and took a bite after my first treatment, died on my arm!)

Bugs never bothered me after that.

Yes, CYP inhibitors require caution. I pay close attention to my body and generally never even take an aspirin. But curcumin when taken with piperine has better anti inflammatory and pain relief than celebrex and the side effects are mild to none existent (and it doesn't cost $12 / dose. I take curcumin and piperine almost every day, generally in homogenized WHOLE (curcumin is fat soluble) milk, got Or sheep milk are better for this "hacking ". I use emulsification agents to aid mixing - pure grain alcohol and lecithin. IF i were taking say warfarin or Coumadin, then yes i would have to do something else. I have seen (felt) the benefits first hand from curcumin and i will always take it on a regular basis. As I said somewhere, researching the interactions are tedious, not everyone has the aptitude to do this themselves. I HAD to, due to periods of no insurance, self medication was something that was required. I cultivated a great many professionals in their respective fields, pharmaceutical, medical practitioners whom were open an honest discussion. Oh yes, quite bit of reading (and other self study) is required. Everyone is different, gut biome for instance is generally one of seven major types, oral medications may work well on one person but not the next. Some thrive on a high protein high fat diet, others thrive on a vegan, try an overnight change and it won't work. sorry.

I ordered 1 Kg of 95% Curcumin from bulksupplements.com/ , where I get my l-serine and a few others. I have used their proteins the rebuild my wasted muscle mass over the last five years and i am pleased with their apparent quality, I try not to cut corners when it comes to my diet.

This is a source that has influenced my diet greatly and we need to look at treating the organism not just the disease (This is an important idea about the limitations imposed by not thinking outside the box and how someone helped themselves). Where do you want to be in three years?

youtube.com/watch?v=KLjgBLw...(Not working as expected?)

I would like to purchase EGCG in bulk but currently cannot afford it, i use this brand right now alturl.com/7djww . I think the Mayo studies (they are listed in some other posts and I don't have them at the moment) on EGCG are a good place to be.

See:

ncbi.nlm.nih.gov/pmc/articl... "Turmeric and green tea: a recipe for B-Chronic Lymphocytic Leukemia"

in the same vein: but not necessarily scientific study as much a report,

ncbi.nlm.nih.gov/pmc/articl... "A Case of Complete and Durable Molecular Remission of Chronic Lymphocytic Leukemia Following Treatment with Epigallocatechin-3-gallate, an Extract of Green Tea"

interesting though.

That is what this is all about, noticing something that someone has over looked or stimulating a thought about your experience.

If I didn't answer something to your satisfaction, please rephrase it and I will try again.

I am not ignorant of my ignorance. I am here to learn as well!

Cheers!

[Robgump]

Interesting read, in that I was shown evidence of Epstein-Barr virus with my CLL.

(another sleepless night of reading)

ncbi.nlm.nih.gov/pmc/articl... "Intense pruritus in Epstein-Barr virus (EBV) hepatitis treated with naloxone drip"

Naltraxone or naloxone is apparently an immune moderator, originally it's use was for heroin addicts to kick their habit. Also has an effect influencing inflammatory cytokines.

immunetherapeutics.com/wp-c...

ncbi.nlm.nih.gov/pubmed/246... "Opioid growth factor and the treatment of human pancreatic cancer: a review"

[Robgump]

Food is a supplement.