What supplements do you take????

[mpbser]

"Antioxidants interfere with chemotherapy" caught my eye. This doesn't sound right to me at all so I did a quick search and found:

Antioxidants gained their fame with cancer patients [I would add heart disease patients also, such as myself] as a result of their ability to quench reactive oxygen species, the free radicals that can result in some cancers. It is also well recognized that they can quench the reactive oxygen species created by cancer treatments.2 These interactions, however, occur only when the antioxidant and chemotherapy are matched. If the molecules do not match, the antioxidant will not interact and therefore will not affect treatment.

http://www.ascopost.com/issues/july-25- ... treatment/

[KElizabeth]

"Antioxidants interfere with chemotherapy" caught my eye. This doesn't sound right to me at all so I did a quick search and found:

Antioxidants gained their fame with cancer patients [I would add heart disease patients also, such as myself] as a result of their ability to quench reactive oxygen species, the free radicals that can result in some cancers. It is also well recognized that they can quench the reactive oxygen species created by cancer treatments.2 These interactions, however, occur only when the antioxidant and chemotherapy are matched. If the molecules do not match, the antioxidant will not interact and therefore will not affect treatment.

http://www.ascopost.com/issues/july-25- ... treatment/

I believe I said my doctor felt they could interfere with treatment.. I'm making no claim that this is fact and I am aware that there are two schools of thought on this but I have trusted my doctor with my treatment. Each person chooses their own doctor and should trust doctor's judgement. If they don't then it might be time to interview a new doctor. Even if you choose to go against doctor's orders, it would be wise to make sure your doctor is aware.
Mostly I just wanted to emphasize that it's important you discuss supplements with your doctor so he/she can be aware of any potential reactions or can suggest a change if needed.
I take mega dose vitamin D and have my levels checked when I have my blood work done to make sure I'm not over doing it. My doctor would not have ordered to check vitamin D if I had not told him about my use. I also take PSK and discussed it with my doctor. He said he thought it was a waste of my money but he thought it was harmless if I choose to take it anyway. I disagree with him on this but he knows that

In my time on these CRC forums I've noticed that discussion about supplements can be just as heated as discussion about religion or politics. It's totally a personal thing that's closely tied to a person's belief system. So
take what you think works, just do your homework and make sure it's not going to hurt you more than it helps you.

[CRguy]

In my time on these CRC forums I've noticed that discussion about supplements can be just as heated as discussion about religion or politics.
It's totally a personal thing that's closely tied to a person's belief system.
So take what you think works, just do your homework and make sure it's not going to hurt you more than it helps you.

AND speaking OF politics sista' ...... you should run for office 'cos that is a very astute observation and gentle way of phrasing things !!!!
I mean that sincerely.

To paraphrase some other posts in this topic and add my own take :
Folks who believe ... believe
those who do not ... do not

... for the past 9+ years here, IMO, many discussions support the FACT that ...
believers in 123XYZ cannot and will not be persuaded otherwise
NON believers in 123XYZ cannot and will not be persuaded otherwise

Yet we will engage in all kinds of discourse "trying" to discuss folks to our own perspective ....
Ain't gonna happen peeps .. trust me ... Ain't gonna happen

While I love a good discussion and have been in MANY involving religion, politics and alternative treatments ...
Now I kind of let folks take things where they will.

I have many years of personal and professional experiences in the traditional Western Medicine field and advanced training in the "complementary and alternative" field. Have a bunch of certifications, know all the "honchos" etc., worked with them and co-managed cases with them all, went to their conferences, got certified etc. etc. etc.

There is a mindset that prevails, which to me, is counter to advancing the state of knowledge and professional practice, over promoting and preserving their own mindset above all else and sometimes .... counter to actual patient's best interest. Which is WHY I did not engage with any of them for my own treatment. I talk the talk because I walked the walk ... with my own LIFE !

TRUE open minded Integrative Medical practice is VERY RARE.

Most of what I read here about this and that "alternative" etc.....BTDT and heard it all before many times.
saying something over and over does not make it any more believable or factual.
quoting certain references ... mostly out of context ... doesn't make it believable to me
extrapolating from the petri dish to a Stage IV CRC patient's clinical reality is ...... dangerous, short-sighted and frankly unreasonable

So that is my 2 cents
take from it what you will

I believe I stated my "bottom line" elsewhere in this forum initially here

exec summary :
" I always keep an open mind ..... JUST
not SO open my brain falls out !!!! "

Always on the Journey
Best wishes to all, whichever path you take
CRguy

[radnyc]

There are folks on here who have always been against supplements, diets and even exercise to prevent, delay or ameliorate our cancer. Fine, to each his/her own, there are lots of us who do care about this and this thread is particularly informative. If you post on it just to be contrarian please find something else to do. Thanks!
Al

[benben]

I take the following:

vitamins
=======
D3
B12
Daily multi
C

other
=====
Turmeric - 720mg
Probiotic
omezeropole

-----------------------------------------

I've been taking Turmeric almost daily since 2011, way before cancer diagnosis.
Given that my pathology suggests a slower growing cancer than most it's possible I suppose that I had cancer prior to the inclusion of turmeric in my diet, but doubtful.
I had a vasovagal syncope episode out of the blue in 2011. Initial testing showed low potassium, and so concluded this was the reason for the syncope episode. I suspected some sort of chemical poisoning, but will never know for certain.
At any rate at time of fainting my liver enzymes were in check. A week later the liver enzymes showed elevation. I also had an endoscopy (sure wish I had them scope down under at the same time), that showed GERD. Ultrasound suggested scar tissue in the liver. So with research I concluded Turmeric introduction into the diet could help with liver function as well as milk thisle. About the same time I was having severe lower back pain and had an MRI on the back. The MRI at that time concluded I had 2 moderately bulged discs in the lower lumbar region. At any rate the turmeric helped greatly with the symptoms of GERD (ultimately I had to introduce omez too). Interestingly enough since I've been taking turmeric I've had zero issues with my discs flaring up. After 1 year my liver enzymes went back to normal. Unfortunately I still ended up with CRC.

[CRguy]

If you post on it just to be contrarian please find something else to do. Thanks! Al

I believe you raise a valid point for further discussion my friend.

My take would be : a discussion topic for folks to share what they are taking as supplements would appear to be low key.
The issue may be more involved, as in ... there have been posts which appear to state facts which are not in fact ... facts !

As someone who is also on the Mod / Admin / forum owner side of the equation .. I must also be cognizant of the fact ... that this IS a highly searched, indexed and referenced online cancer support forum. While we would like all of the info here to be cutting edge and rock solid, sometimes it could be interpretted as being more subjective.
From the CClub / CTalk Admin side of things, when something is stated as fact, and others dispute said fact ... WE allow the discussion and dissent as a healthy exercise in promoting the notion of :
"informed, pro-active patients/caregivers" are empowered to make intelligent decisions about their health care.

If somebody says "you are a idiot for believing 123XYZ" ... the Mods nuke those posts and inform the members to maintain appropriate civility OR avoid reading and replying to folks with whom they have NO common ground.

You and I have both been here long enough to survive a whole shitload of flame wars on a variety of topics.
They are not always pleasant ... BUTT they do serve their purpose in helping us all to redefine and solidify the reasons we all wish to continue being here.

Case in point : a recent member had "issues" with how they were treated here initially and expressed a wish to leave.
Said member and caregiver are now active and vibrant contributors to this forum and have garnered MUCH support, caring and INFORMATION to better enable them to be "informed, pro-active patients/caregivers" .... empowered to make intelligent decisions about their health care.

If I may, from a minor legalese heritage AND a very broad take on the subject, paraphrase / reframe the doctrine: " Res ipsa loquitur "

some THINGS ... the validity of this very forum and the ongoing service it provides to ALL ON THE CRC JOURNEY
are indeed a fact which speaks for itself

Harmony All
CRguy

[SarahS]

Lots and lots of supplements, including vitamin D, curcumin, PSK, IP6, cimitedine , beta glucans, ellagic acid
and some others that I have forgotten, just as well it is not me taking them.
Some are in tablet form , some from food for better bio availability.
After being given a "month to live" back in December (thank you the amateur dramatic society at our local ER) we are still trundling along some 6 months later with some shrinkage to most of the tumors
Do I think that is becasue of the supplements ?, no, probably not, it's probably becasue of the chemo, but who knows for certain.
I studied plant biochemistry at university so yes I do believe there is something to be gained from taking supplements, I don't think we've even begun to scratch the surface of discovering the healing potential of natural substances.
That said I understand this is an extremely personal issue and is almost akin to a belief system, so I'm not going to attempt to convert anyone.
Just answering the original question.

[radnyc]

CRGUY, in reply all I can say is good-bye. It's been great interacting with so many great people on here and I wish you and all of us the best. It seems that those in charge of the blog are not as open, understanding as I thought. But, keep trying, don't be afraid, people look up to this site for support both practical and emotional. Please remove me from the database.

Al

[mpbser]

I've noticed a few things here at this forum:

1) No one questions the efficacy of chemotherapy, at least as far as I have noticed.
2) When people describe their conventional chemotherapy, no one demands a study or other reference to support its usage.
3) Statements such as "curcumin is 3x more effective than chemotherapy" are categorized as invalid, non-factual, etc, when actually, they are not. Such a statement merely lacks precision but that doesn't make it false.
4) Without going to the studies that have been cited in this thread, and the many other related research that can be found at greenmedinfo.com (one of my favorite places), perhaps a more accurate statement would have been "studies have suggested that curcumin is more effective than chemotherapy at reducing inflammation" or the like.

I am not a scientist, so I really don't care. If some people care so much, they can do the research themselves.

[peanut_8]

I've noticed a few things here at this forum:

1) No one questions the efficacy of chemotherapy, at least as far as I have noticed.
2) When people describe their conventional chemotherapy, no one demands a study or other reference to support its usage.
3) Statements such as "curcumin is 3x more effective than chemotherapy" are categorized as invalid, non-factual, etc, when actually, they are not. Such a statement merely lacks precision but that doesn't make it false.
4) Without going to the studies that have been cited in this thread, and the many other related research that can be found at greenmedinfo.com (one of my favorite places), perhaps a more accurate statement would have been "studies have suggested that curcumin is more effective than chemotherapy at reducing inflammation" or the like.

I am not a scientist, so I really don't care. If some people care so much, they can do the research themselves.

You have brought up some good points mpbser. In my case, as a stage 2a, I was on the fence regarding adjuvant chemo.

so as far as your points go,

1) I read as much on the internet as possible, and has numerous discussions with my oncologist regarding chemo. I had fired my first onc as she was not one who was willing to take the time to discuss things with me. At that time, my sister worked for a major US pharmaceutical company and actually had the company's resident oncologist give me a few tips.

2) There are many studies out there on how effective adjuvant chemo is. My oncologist is familiar with all of them, and as questions would pop up, he explained each and every one. You should be able to begin investigating them. Believe me they are out there. In my case the Mosaic study help making a decision. It studied the difference between FOLFOX and 5-FU in stage 2 and 3 patients. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2588473/

3) Actually I'm still waiting for you to reference where this statement came from.

4) Chemo isn't necessarily known for reducing inflammation, so why would this come as a surprise. My problem with your initial statement was that someone could interpret it so that you could take cucurmin instead of having adjuvant chemo, and itwould be 3 times more effective.

I'm actually impressed with how much time you and your husband have spent researching treatment options, and hope things go well with his upcoming appointment.

Regards,
peanut

[SarahS]

"1) No one questions the efficacy of chemotherapy, at least as far as I have noticed. "

Exactly,
How long has 5-fu been the standard treatment for colorectal and several other cancers? decades, nothing new since the 1970s
It works, sort of kind of on some people if you're lucky until it stops working and then it doesn't work anymore

and that.... is the best we can do? I mean unless you are "fortunate" enough to have tumors high in Microsatelitte instability

I wouldn't substitute supplements over chemo, but I think I can understand the need to search for something that might increase the effectiveness or at least help the body protect itself against the ravages of chemotherapy.

[mpbser]

Agree 100%, Sarah.

[rp1954]

What I typically see are seriously incomplete treatments that are inadequately measured to engineer a safe landing, whether chemo and/or supplements. It's their correct combination that achieves a better class of results. And the mechanics can be much simpler than for standard chemo sufferers, too.

Both now standard chemos, Folfox and Fofiri, have many toxicities that yield serious long term damage for temporary effectiveness, to often yield recurrences with refractory cell lines that grow rapidly. Although I was initially negatively skeptical about 5FU because I could not get some straight answers, it's really oxi- and iri- that should be scrutinized for relative therapeutic value. These are nasty, crude drug adjuncts to somewhat extend the performance of 5FU timewise, at great cost to a body. We've seen better, mild oral drugs and supplements vs the empire of IV toxics and control. The principal problem with 5FU is that the cheapest 5FU drug, with a highly favorable therapeutic index, is not available in most western countries and is not well technically exploited generally - unfunded, unadvertised and unsupported with technical staff. IV oncologists as whole have typically ostracized the "treat the people idealists" and this oral drug since the 1980s.

In the US, a quirky, stupid law prevented FDA registration of tegafur-uracil ca 2001, because uracil is not itself (cancer) toxic. The paid politics at a corrupt FDA appear to have prevented its waiver for tegafur-uracil right before the introduction of Xeloda. Imagine while US patients in 2010 were paying $6000-$9500 a month for Xeloda, we paid under $150/month for tegafur-uracil, without the damage and debilities of Xeloda either.

Most nonstandard treatments and supplement regimes are not in efficient therapeutic regimes either. Partly this is because of missing components for the particular disease, lateness in application, inadequate dosing, lack of simple targeting, lack of continuity, lack of feedback monitoring and control, and lack of skilled medical support (or even disruptive behaviors).

It's actually much simpler than it sounds when correct methods displace ineffective ones. As a part of this, supplements have several crucial support roles as well as enabling longer, more continuous, more multitargeted cancer treatments well beyond the inherent limitations of chemo toxicity.
----
As for the curcumin issue, both sources ("3x better" vs "PAINS") appear seriously polarized with respect to contradicting application realities. The "3x better" refers only to what sounds like a 3D artificial biofilm fragment in vitro (e.g. "test tube") for those particular stem cells. That 3x statement neglects the other cells, and totally misses the transport and metabolism problems in real life. Then the PAINS paper seems to overstate the transport and metabolism problems as overwhelmingly terminal, in the face of measured therapeutic uses of curcumin that imply some degree of in vivio benefit, perhaps secondary absorption and transport route(s), and benefit from curcumin or some metabolite.

[mpbser]

Update on supplements:

PRE-SURGERY: kyolic garlic, omega 3s (DHA and EPA), curcumin 95, grape seed extract, vitamin D, magnesium malate, coenzyme Q10, zinc with carnosine, and Men's Total Health multivitamin.

2 WEEKS PRE-SURGERY: Discontinued the kyolic garlic, omega 3s (DHA and EPA), curcumin 95, and grape seed extract, because of blood-thinning properties. Continued vitamin D, magnesium malate, and Men's Total Health multivitamin. Added 500mg vitamin C.

AFTER 2 WEEKS POST-SURGERY: curcumin 95, vitamin D, magnesium citrate, coenzyme Q10, zinc with carnosine & pepzinGI, 1 g. vitamin C, Men's Total Health multivitamin, and iron. The iron was advised by oncologist who took labs for ferritin, serum iron saturation, and serum iron, all which were well below normal levels.

WILL BE DOING, AFTER 6 WEEKS POST-SURGERY: kyolic garlic, omega 3s (DHA and EPA), curcumin 95, vitamin D, magnesium citrate, coenzyme Q10, zinc with carnosine & pepzinGI, 1 g. vitamin C, iron, milk thistle extract, decaffeinated green tea extract, and Men's Total Health multivitamin.

Still considering graviola, PSK, beta glucans, and quercetin.

[rp1954]

In the post surgical environment, we've been much more aggressive on supplements, especially on IV vitamin C with oral 5FU. Based on various papers and researchers, I strongly suspected that my wife would have multiple benefits from IV C, as I suspect many mCRC patients would. Experience, lab studies and multiple markers have improved as well as increased that view, for our case.

For chemo, we chose an immunochemo backbone not readily available in North America but well suited for selected or targeted supplements. The closest analogous backbone in the US would be Dr Lin's ADAPT treatment (daily capecitabine/Xeloda + celecoxib). It took 6 weeks for us to get the immunochemo in place after the first surgery but would have preferred the two week start shown in various Japanese papers. Once we had experience with wound healing and supplements, not even two weeks were required to resume immunochemo after a successful surgery. The Japanese have even published examples of successful surgery with 5FU chemo.

Our biggest problems have been getting the important data soon enough, and using enough adjunct treatment, supplements and off label generics, to make 5FU based drugs work (again). I can only comment that successful supplementation and immunochemo are most achievable with better data. To me, modern oncology with mCRC is like flying a plane into a thunderstorm at night without night instrumentation, flying by sight (scans) alone - oncology self congratulatory when it gets their patients back down alive in one piece, durably NED. I look at all the crash and burns, and shake my head.