13 replies to this topic

[gerry]

From 1-3 May 2015, the CML Advocates Network welcomed 118 delegates (among them almost 30 newcomers) supporting patients and families affected by Chronic Myeloid Leukemia (CML) to its annual conference CML Horizons that this year was held in Barcelona (Spain). 

 

http://www.cmladvoca...l-horizons-2015

[pammartin]

Thanks Gerry!

[TeddyB]

Good to have some stuff to read this weekend, thanks

[TeddyB]

Seems some effort is going in to erradicate the cml stemcells:

 

http://www.cmladvoca...t-pathways/file

 

Which one of these "attacks" would be most likely to work out?

[Trey]

Inhibiting TNFa suppresses the immune system.  That is what I mean when I say curcumin is a natural anti-inflammatory.  Suppressing the immune system is not something you want to do during TKI cessation if success relies on the body's immune system to control the residual disease.

[scuba]

Inhibiting TNFa suppresses the immune system.  That is what I mean when I say curcumin is a natural anti-inflammatory.  Suppressing the immune system is not something you want to do during TKI cessation if success relies on the body's immune system to control the residual disease.

 

Here we go again ...

 

Curcumin is NOT a TNF blocker. TNF is vital for immune response (especially lymphatic response). But "over" expression of TNF can cause inflammation as well as accelerate myeloid cancers and other nasty autoimmune problems.

 

Curcumin is a down-regulator of TNF. Keeping genes running properly is what "food" is all about - especially plants. Natural down-regulators are vital for NORMAL cell function. Run-away cell growth almost always involves genes being turned on to "over express". Being able to "down regulate" is vitally important for the body's own systems to defeat cancer (through DNA repair, P53 gene expression & apoptosis). A true TNF inhibitor is likely to have significant side effects (including other cancers) if a patient is treated for long time this way. Perhap necessary in the short term to save a life, but perhaps trading big problems down the road.

 

Down-regulating the biochemical pathways that are necessary for CML to progress is a valuable area of research. Often the down regulation is fatal to a cancer and not to the normal cells. Plant phytochemicals, in general, (garlic, onions, Turmeric, Tomatoes, Potatoes, grapes, etc.) contain all sorts of chemicals that down-regulate our genes. And these plants have been around for millions of years (as long as mankind has been around eh?).

 

As I have said before - it's all about population control and which one dominates - the normal cell population or the cancerous one. Down regulation is an important way for our bodies to get control when systems get out of whack. 

 

And that brings me to vitamin D ... (I'll stop here Trey ... topic for another day).

 

edit:

p.s. Anyone take Aspirin? Aspirin is a potent TNF down-regulator. And more potent than Curcumin (because of its easy bioavailability) (http://www.researchg...sue_macrophages). There is data for Aspirin effects on solid tumors, but not Leukemia.

 

And then there's garlic - we all like to eat garlic with our pasta sauce - yes? 

http://library.tasmc... 2005/bruck.pdf

Garlic is a potent TNF down regulator. And garlic has been shown to drive Leukemia cells into apoptosis.

http://www.realnatur...ia-cell-growth/

 

Neither Aspirin or Garlic (and the other plant stuffs) hurt our immune system. If anything, they help our immune system run right. And the same goes for Curcumin

[Trey]

So you disagree with your curcumin expert Dr Aggarwal?

 

http://www.ncbi.nlm....pubmed/23425071

[scuba]

So you disagree with your curcumin expert Dr Aggarwal?

 

http://www.ncbi.nlm....pubmed/23425071

 

I do - Dr. Aggarwal when i asked him about this very topic mentioned that he meant "down regulate" not "block". English is not Dr. Aggarwal's first language. He did not mean "complete blockage". It's unfortunate that this happens. Thanks for pointing this out.

Curcumin is, in fact, a down regulator, not a blocker. Just like the other phyto-nutrients are mostly down regulators - not blockers. When we eat plants we are easily eating all sorts of down regulating nutrients.

 

Here you go:

http://www.ncbi.nlm....pubmed/24491024

 

Trey - don't be anti-Curcumin - it's very good for you. You don't have to believe that it impacts CML the way I do. By the way, I mostly care that Curcumin blocks Nf-kB ... oops, I meant down regulates Nf-kB.

[Trey]

Mr Tee and I would simply like to understand why inhibiting (suppressing, down-regulating, modulating, whatever -- neither of us said "block") the immune system during TKI cessation is a good idea since the immune system (T-Cells mainly) apparently keeps the CML under control after TKIs are withdrawn.  There is no question curcumin suppresses the immune system since it is an anti-inflammatory.  So the T-cells become less active when you would want them to be more active.

 

We want to help you succeed in your cessation experiment.  That's the point of this LLS Board.  If the curcumin is working against your TKI cessation by decreasing immune response, we all want you to consider that.  Whether it helps or not during continued TKI therapy for others is not my concern here.  We would like to see you succeed in TKI cessation, but are concerned the curcumin is working against you.

[scuba]

Mr Tee and I would simply like to understand why inhibiting (suppressing, down-regulating, modulating, whatever -- neither of us said "block") the immune system during TKI cessation is a good idea since the immune system (T-Cells mainly) apparently keeps the CML under control after TKIs are withdrawn.  There is no question curcumin suppresses the immune system since it is an anti-inflammatory.  So the T-cells become less active when you would want them to be more active.

 

We want to help you succeed in your cessation experiment.  That's the point of this LLS Board.  If the curcumin is working against your TKI cessation by decreasing immune response, we all want you to consider that.  Whether it helps or not during continued TKI therapy for others is not my concern here.  We would like to see you succeed in TKI cessation, but are concerned the curcumin is working against you.

 

Trey - you're confused. Curcumin enhances T-cell performance. Down-regulating "pathways" is not the same thing. Inflammation response is not just T-cell "expasion" (more T-cells). Aberrant cancer cells and inflammation are not the same thing. Surely you know this. If it hadn't been for my taking Curcumin (at high doses for over two years) I would never have been able to get to MMR on only 20mg of Sprycel. Until I took Curcumin, I had little drop in PCR let alone FISH because of myelosuppression. Curcumin coupled with low dose Sprycel brought me close to PCRU for a long time and helped rebuild my marrow. 

 

Here is yet another reference:

 

http://www.ncbi.nlm....pubmed/22135043

 

"we have shown that curcumin enhances cytotoxicity of CD8(+) T cells toward tumors via alteration of the tumor microenvironment".

 

I have been off Sprycel since mid-February with no change. Surely if Curcumin was damaging my T-cell population let alone zero TKI - my PCR's would skyrocket log over log in 3 months. But then again perhaps my T-cells are being helped by the Curcumin so that the TKI was more effective (http://www.ncbi.nlm....s/PMC3162943/) - or maybe it's the vitamin D - or Selenium (I haven't mentioned that one yet - one Brazil nut a day).

 

I go for my monthly PCR test tomorrow - I'll know in a week whether my experiment continues. Curcumin is not working against me, Trey - you're too funny.

 

Thanks for wanting me to succeed. 

[Pin]

Good luck with your next PCR test Scuba, I'm hoping you remain low.

My next one is due next week, if the results are back to good again, I'm going to ask if I can reduce dosage. I'll be told no, but I'm going to imagine what it would be like anyway!

[scuba]

Good luck with your next PCR test Scuba, I'm hoping you remain low.

My next one is due next week, if the results are back to good again, I'm going to ask if I can reduce dosage. I'll be told no, but I'm going to imagine what it would be like anyway!

 

Thanks - I'm hoping for a "no detection" - but will settle for PCR < 0.01%. This is a big test. If successful, I will have gone 3 months without TKI and no change. That's a big milestone. According to the cessation trial data, now is the time something should show up if it it is going to show up in the short term. If I make it to six month, I will go back to normal PCR testing (once a quarter) and then the next milestone will be at 20 or so months.

[gerry]

Pin,

If you're back on a downward track (got my fingers crossed for you) keep having the discussion with your doc. My doc came round to dosage reduction and then to stopping and he was a keep hitting it hard guy when I first went to see him.

 

I found having the goal in my head helped get me through the side effects. 

 

I'm hoping you get to PCRU and can then get it stable for at least six months, then reduce.

[Gail's]

Rooting for good results for you scuba. Have to say you and Trey have a great deal of knowledge about this stuff. Even if you disagree it gives me a lot to think about.

On another note, did anyone else get the announcement thru LLS that dr Druker will be leading study on new therapies for AML? They're trying to raise $300,000 quickly