Log in
CLL Support Association
10,893 members16,840 posts

Evidence used for my decision process with (IMO)

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 "

Liposomes information (for supplement bio availability):

sciencedirect.com/science/a...

Taking advantage of liposome "hacking" as a solute for curcumin:

pubs.acs.org/doi/abs/10.102...

Goat or sheep milk is a great alternative for hacking as they both are naturally homogenized. I generally do not take turmeric/curcumin without MCT's or other lipid supplements due to efficacy.

You may also like...