Update on supplements with some history

[stu]

Well done on taking the high road . I have sympathy with the medical teams whilst it is individual decision they are handed the problem of contraindications back to solve when it goes horribly wrong .
Just another thought on why they tread with caution.
Stu

[Pyro70]

I see this as a great challenge. Is being kind and not trying to help someone avoid being taken advantage of by magical/weak thinking really the high road? To be honest, I don’t know. It’s people’s own body, but studies show there is a lot of damage done by alternative medicine - both in terms of health and certainly financial damage, along with false hope leading to poor life decisions.

I think if you know it’s wrong you have an obligation to speak out against BS. The scary thing in our society is that it’s socially acceptable to tell a cancer patient to try some alternative medicine BS. I’m sure everyone on this forum has experienced that. But it’s somehow considered rude to speak out against pseudoscience, quacks, and scams...

[rp1954]

... but studies show there is a lot of damage done by alternative medicine - both in terms of health and certainly financial damage, along with false hope leading to poor life decisions.

This forum is also littered with people's lives ruined by cancer with regular medicine in terms of health and financial damage and false hope.
Poor life decisions? Don't get me started on general medical failure(s) on the first day of diagnosis … or adjuvant survivors damaged and disabled by chemo that likely had better options with a little lab work or preventative nutrition.

I think if you know it’s wrong you have an obligation to speak out against BS.

I've seen a lot of bs about supposed BS - definitely there is an unmet need for a good bs meter. Often times we are "authoritatively" told medical factoids that are greatly misrepresented and overstated in their scope, evidence and authority about supposed "bs". Medicine should be more highly regarded for what specific good it can predictively deliver in a cost effective manner, rather than idlely project likely adversarial advertising and potential incompetence onto other subjects for an extra profit.

Some of the more valuable presentations on these boards are the honest accounts of patients' journey into far places that we've never been, warts and all. Cool, thoughtful, insightful discussions before, during and after are so much more desired.

The scary thing in our society is that it’s socially acceptable to tell a cancer patient to try some alternative medicine BS. I’m sure everyone on this forum has experienced that.

Ordinary people have medical experiences that they don't understand, and frequently, neither do their doctors. Biologically successful alternative medical treatments may be based on slightly overcoming mundane biases, corruptions and ongoing failures in regular medicine that have had huge consequences.

Of course, some cancer success stories are either premature or biologically trivial. Medicine has a mixed track record allowing patients tools to differentiate substantial successes and kinds of success. We've encountered a lot of interference and obstruction along the way that has cost us data, time and money, that would have repeatedly discouraged and stopped out normal patients.

But it’s somehow considered rude to speak out against pseudoscience, quacks, and scams...

The forum's experience here is that such presumptive superior knowledge and authority spiced with rude words can quickly degenerate into damaging verbal fistfights. The bolded words are dismissive, often more a personal attack, rather than useful discussion about personal experiences or clinical phenomena.

[jep]

I took curcumin (LEF's Bio-Curcumin, which contains BCM-95) while I was receiving chemo in my HAI pump. However, I saw an integrative medicine doc at MSK who coordinated with my oncology team. I figured oncologists, surgeons, radiologists, etc. all have their own specialties (and limited view of patient care), so I didn't expect my onc to be well-informed about supplements.

Curcumin has been shown to increase the efficacy of Xeloda which I was taking as my systemic chemo. I also took it before I had the pump (15 months of prior chemo). There was a study out at the time showing that curcumin sensitizes human colorectal cancer to Xeloda; it enhances apoptosis induced by Xeloda and inhibites activation of certain gene products involved in proliferation, invasion, metastasis, antiapoptosis, and angiogenesis (a mouthful of medical terms, but all good stuff!). However, curcumin doesn't play well with blood thinners so it helped I wasn't taking them. You have to take into account all of your meds, not just add things in randomly and without supervision (unless you are very medically experienced, like a few people on this forum).

For me, at least, the trick was getting a progressive integrative medicine doc involved. She also put me on thisilyn (milk thistle) after I stopped taking FUDR in the pump. Some of my liver enzymes were very elevated and thisilyn brought them back in the normal range within 6 months of supplementation. She also prescribed Super Coriolus (PSK) to stimulate the immune system.

It's interesting how medicine forms into "silos" - surgeons say the best idea is surgery, radiologists say they can zap it with radiation, oncologists say chemo and more chemo. Unfortunately, it's up to the patient to do their own research and find out the pro's and con's of every approach. Inform yourself, ask hard questions, and be proactive in your treatment.

Juliej

Hey Juliej ... my husband is starting xeloda for the first time soon...sounds like curcumin is something we should seriously look into... we will discuss with his oncologist....thanks for the post
jep

[mpbser]

"It's interesting how medicine forms into 'silos'"

Yes... within and in between specializations! This is an off-cancer-topic question: what is a patient who does not have the wherewithall (does not have the mental/emotional/physical capacity to self advocate) to do when the silos are so disorganized that the patient's health care is not being appropriately addressed?

I am going to start a new thread about this.

[cckc57]

Excellent to hear about the curcumin supplement. Thank you for sharing!
I have not been about to find this LEF Bio-Curcumin. Where do you find this, and do you know if it contains a BioPerine or a hydro-soluble formula? A supplement form that is hydro-soluble absorbs better.

[zephyr]

Excellent to hear about the curcumin supplement. Thank you for sharing!
I have not been about to find this LEF Bio-Curcumin. Where do you find this, and do you know if it contains a BioPerine or a hydro-soluble formula? A supplement form that is hydro-soluble absorbs better.

I think juliej was probably talking about Life Extension Foundation's Bio-Curcumin. You can search for it on the Life Extensions website.

[jep]

I'm thinking about ordering my husband the Super Bio-Curcumin Extract (vegetarian capsules)....does anyone take/recommend these??
Thanks!!
jep

[jep]

Oops.... I just read the "Caution" on the Bio-Curcumin and it said not to take if you have gall stones (which my husband does have)....

[Green Tea]

.... I can’t really remember exactly what supplements he was taking ... 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 ...
Lastly, I will be doubling his vitamin D dosage in about a week and will continue ....

Hope this helps those people interested in supplementation.

Thank you for your post. It helps me because it gives me some peace of mind to know that there are others out there who fill their daily pill boxes with some of the same kinds of things that I use.

Of course, I cannot claim that the supplements I use are all that effective, but I do my own research and I only fill my pill box with the things that seem most likely to have a chance of keeping me healthy.

So far it has worked out OK, but only time will tell...