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the multidisciplenary team of the future, do you think this would be an improvement ?

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

just my opinion, but if they added a functional gp, and a naturopath , a chinese herbalist and a massage therapist then I would like to think they could get better results for the 60-70% that don't make it in the study mentioned below.

If you read the full study carefully you will see hyperthermia and the netherlands clinical trial as offering the best hope for some classes of stage 4. but again this is a trial, its not into evidence based medicine yet. but at least we are informed about the latest international trials and we can at least ask our onc's about these if its applicable. I would say insist of the specific treatment that gives you the best chance of health. conventional has so much to offer, if we removed the evidence based medicine bottleneck.

steve posted this research a few days ago, it really got me thinking. the article seems to show the best that conventional medicine has to offer us.

my point is how much better would our odds be if we had the best of alternative and conventional working for us. its my firm opinion as a hopefully guess. maybe 5%. you see its the raveges of conventional that knocks out a few of those resectable stage 4. if every patient going in for curative stage 4 resection had better health, better liver function, better bloods, more muscle. i would like to believe we could improve our overall chances as a group.

so my hypothesis is that gaining as much health as achievable everyday, in every way will get you in the best shape for the operating table, when and if they go for resection. I have only had one resection, i lost about 30kg of fat in four months getting ready for surgery, my surgeon said it helped alot.

http://www.cancernetwork.com/print/article/10165/2044871
Conclusions
When limited to a specific organ site, mCRC is potentially curable. To date, nearly all of the clinical studies have focused on liver-limited disease, but similar results are now being reported for patients with disease limited to the lungs, ovaries, and peritoneum. It is clear that a multidisciplinary team-based approach is required for the optimal care of this particular subset of patients. The development of an individual treatment plan comes from a careful discussion and ongoing communication among a multidisciplinary team of specialists, including surgeons, medical oncologists, and radiologists. With the appropriate integration of chemotherapy plus biological agents and surgery, up to 30% to 40% of patients with organ-limited metastatic disease can be cured. While the costs of the three biological agents—cetuximab, panitumumab, and bevacizumab—are not insignificant, the clinical evidence is now well-established that their incorporation with cytotoxic chemotherapy regimens in the neoadjuvant and conversion settings has greatly facilitated curative resection of liver-limited metastatic disease. However, further improvements are needed to enhance the clinical outcome of the remaining 60% to 70% of patients. Further refinements in whole-body and hepatic imaging should provide for a more accurate selection of the subset of patients who would benefit most from resection and would identify the presence of minimal residual disease following surgery. Finally, clinical trials are needed to develop novel cytotoxic agents and biologic/targeted agents that can be used in both the preoperative and postoperative settings to reduce the risk of local and systemic recurrence.

hugs,
pete

ps i know i always seem to see things in an optomistic way. maybe the glass is half full. mine is.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

My latest naturopath Darren specialises in life style interventions guide by your genes and epigenetic factors. His care is indespensible. I am summarising the key genes relevant for colorectal survival based on my profile and his advice. My gene profile completely backs up most of my supplementation and results of functional tests i have had completed thus far.

These functional tests done by functional gp's are again outisde the interest and expertese of our onc's. it should stay that way as well, as my experience indicates these areas are complex enough to stay separate areas of focus.

So the naturopath has to be qualified and trained in genetics and then all the standard ND issues like supplementation and chelation. Chelation is another fundamental function your medical team may need to deliver. I am sure many folfox based colorectals have platinum poisoning like me.

ignorance is not bliss, platinum screws your immune system, i am going to get the platinum out of me. naturopath 2 tracie and functional gp 3 emmanual have a focus on chelation.

now medical qigong is an exceptional therapy, it works hand in hand with accuptuncture. Now i mentioned that tcm, accupture and qigong are being offered in one of the most integrative hospitals in sydney The SAN, my hospital Saint Vincents is really negligent in its offerings, and it says it offers world class care, maybe only as far as conventional goes. I am blessed to have been able to access all these supportitive therapies. yes at considerable cost in terms of money, time and effort. My current health reflects each areas unique contribution going forward.

So as we head into the 21st century, our cancer care is lagging in my opinion. So much more is available if you want it, if you seek it out.

So I want my onc to open her mind to the vitamin c international amd local trials going. She cannot become a naturopath, or a functional gp. she is a specialist, the requirement to specialise is getting greater as the drug options become more diverse.

now with the arrival of ctc's and molecular testing, i see the onc's role getting more difficult. i really don't want her commenting on supplements and diet, areas way out of her expertese. she probably still drinks tap water, and does not understand the health benefits of alkaline water as i do, as they have been explained to me.

so in the multidisciplenary team i am building my onc has a fundamental and critical role, but see does not call the shots when it comes to my total health. see cannot even rebuild a gut between chemo treatments, and more so she is not even interested. i encourage her to keep her narrow focus on chemo drug, and blood markers and ct scans. she was not even aware of the 2% risk of secondary cancers due to old tech ct scanners. she is not aware, but i bet does not send all of her patients to sydney xray.

making sure all members of your custom built multidisciplenary team work well togther is the patients, or the patients advocates role. i am developing these skills day by day.

having a qigong master and accuptuncturist working well together is essential. I have found sam li, who is a tcm doctor, qigong teacher and accuptuncture practioneer. I have been getting treated by him with accuptuncture for 3 weeks now, and its a therapy i will keep on going. the needles stay in for 2 hours, i go into the deepest qigong trance using a meditation routine known as the greater heavenly cycle.

the goal of these combined treatments is that our body has an innate memory for the moment of chee. soon Sam says I will be able to effectively get the benefit of accuptunctiure whenever i meditate. I have been training in qigong wednesday nights for 4 months now and making serious good progress. you can direct your mental focus and energy to specific organs, you can fix heart attacks, you can help your liver, and you can help your kidney. the meridians of qigong, tcm, accupressure points, basically reflect the india yoga teachers body map.

yoga and qigong work so well together, i wish some others here had serious experience in these modalities as ways to achieve better and improved health.

So I am just sharing my insights for my treatments, what i see as the benefits for myself in good faith. i am not suggesting anyone do any of these modalities themselves. but i am sharing my experience and the benefit i percieve i have received.

you can build your own multidiscipenary team, you are not limited what your local hospital sells. this approach is not being pushed by doctors, they will be the last to push this.

who is psuhing this, well it will be government and health insurers because the results to me a clear and speak for themselves.

what does 2 hours accuptuncture and guided qigong practice cost well about $60, after health fund rebate its down to $35 or $17.50 per hour. all the alternative specialists i consult have health as a goal, not profit. its very easy to build a great extended multidiscipenary support team if thats what you want.

no pressure to respond or reply to this post. I just wanted to put it on the record. so that in 10 years time when its common practice i can look back that i have at least share my insights for what i have learned on my healing journey with colorectal cancer.

when i get my chelation completed, a very demanding and challenging set of protocols i will seek to be added to the local colorectal clinical trials advisery board. even all of the scientists here researching conventional colorectal treatments have enormous distrust of the alternative modalities. it will be fun to add my experience and insite into that group of researchers, who are some of the best in the world in trying to find the magic bullet for our crc. they declined my nomination about 8 months ago, and i did not fight it, now i am having second thoughts about this.

love and health to us all.

hugs,
pete

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

No.

Here is the problem with your "learnings":

No measurements, no controls. Whatever effects you think you are getting are just that, what you think. Much like someone who believes in the power of prayer, you can say it doesn't hurt, but you can't say with certainty (proof) that it helped.

As to the seminars you attend, they suffer from the same problem, a lack of measurable results and lots of bias.

This is not to say that something you are trying isn't working, just saying that you cannot know if it worked or not.

Why run clinical trials? They are set up to remove bias (something you cannot remove on your own, and you, like me and everyone else with a pulse, are full of bias). They remove as much outside interference as possible, ex; your bias says that juicing has prevented a recurrence, but you take a low dose aspirin every day for your heart, and you exercise regularly. Was it really the juice, or did aspirin and exercise help you beat the odds? (for the record, there is strong clinical evidence for two of these, and, despite research, a lack of clinical evidence for the third.) Clinical trials closely follow small groups, or they use a large enough group that you can use statistics to determine who the outliers are.

Medicine is, and should remain, a science, and that means that treatments should have to stand up to the scientific method (for the record, medicine is not perfect, and there are many treatments that have not faced sufficient scientific inquiry)

Btw, you don't have to know how something works to prove it works. James Lind found that citrus prevented/cured scurvy in 1753, almost two centuries before the discovery of Vit C. He did by creating control groups, one that ate green veggies, one that got citrus, one that ate the regular diet of salted meat, etc... As a result of his research the Royal Navy eventually added limes and lime juice to the diet of its sailors (Limey's), though it took many years for the powers that be too accept the proof of his research.

Lind's research could also be replicated. He published his study, and others could duplicate his controls and check the results for themselves. This is another important part of clinical research and the scientific method. You may be able to build a perpetual motion machine, but if no one else can independently verify/duplicate your work, how do I know you are not a charlatan?

I leave you with a video from TED, that is a pretty good critique of "how do you know":

TED: Bad Science

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i think i just got carried away with the benefit i feel i am getting from the naturopaths and functional gp's with regard bowel habits, gaining muscle, and general health of biology.

actually i have so many controls its daunting, i honestly cannot keep track of all the details of all the tests i am doing. molecular ctc's or genetics. none of them sanctioned or ordered by conventional medicine. you know i was measuring my fasting glucose, bp, weight , temperature, urine ph every morning. i have back off now, doing it weekly. i do have lots of personal measurements. even the 6 weekly cea measurements is now overlapped with the cancer strategy my functional gp's want to try. as still nothing offered from conventional medicine to address rising cea.

so i am trying like hell to be scientific.

as for bias, i see it everywhere from the cancer seminar at the hospital that said diet has nothing to do with cancer treatment. to the toxity conference called the sky is falling , they sell toxity test kits. yes to the gawler conference, they push alternative cancer therapies.

i think i just wanted to share the fact that have in essence built my own multidisciplenary team. everyone will be different. ok we have the core offered by conventional medicine surgeon, onc, radiation. i just feel i have benefited from seeking care from naturopaths, tcm and etc etc. but you are right these are just my impressions, i have the rising cea issue thats still unresolved, unexplained by western and alternative camps. and another day passes by.

its the uniqueness of each of us, our cancers that is driving my approach. i don't think evidence based medicine can really cut it, when we are so different. i am saying that having more specialists not less may help the cancer patient achieve better health during the treatment cycle.

drinking my poisonous juices may not do anything, it just getting the nutrients, is all i was trying to do. but then you need a functional gut, for that you need stomach acid, for that you need zinc. and it goes on and on and on.

somewhere in the mix the body burden of environmental toxins comes into play for some of us fighting our cancers. i have got heavy metal poisoning even some platinum from folfox.

from what i have read getting detoxed makes sense. these are areas my onc and surgeon have no interest in, i do see that following up this area of my biology may offer some long term improvements to my health.

don't get me wrong, i like the scientific method, maybe i am trying to fast track things, in a sense i am picking my favourite therapies, that i have access to, can afford and yes i am giving them a go. well the results are what they are, and tomorrow i will leave to tomorrow.

i just want to get oncs working with naturopaths as a starting point. remember all those months ago i started here, i was in er for diarrhea with the bag, my naturopath came up with the solution, my onc was not even interested. i think thats wrong.

i'll watch the ted tomorrow.

I hope you are having a good day.

I wish i could say something has prevented a recurrence, this escalating cea is still my biggest challenge. I hope what i am trying has helped, what i doing feels right for me.

hugs,
pete

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

is neither a control nor is it science, it is measuring.

Sure, it is important for diagnoses, and it can aid in treatment decisions, but in and of itself it does nothing.

Here is an example:

I have lymphedema in my left leg, and I am getting wrapped as a way to move the fluid from one place to another. Prior to wrapping we measure the circumference of the leg in several spots, marking each with a magic marker. When the wrap comes off, we measure again, and in this way we gauge the efficacy of wrapping.

The process is simple, repeatable, and I am able to rule out most other factors that could be responsible for the shrinkage. However, I am not able to say with certainty that wrapping works. Why? Because there are other factors: Chemo, the cancer, my diet, my fluid intake and more can all have an effect on the swelling. When I don't wrap there are good days and bad days, and when I do there are good days and bad days. That said, it seems to be working, so we continue to do it.

You deny science, yet you buy into the pseudoscience because it sounds like science. You note that Gawler is hawking all kinds of products and services in one thread, then claim that he has no interest in profit in another, and you completely ignore that Gawler did not follow a vegan diet when he had cancer, that it was something he came up with after his "miraculous" cure (there are other holes in his story as well, but that one stands out). You fly to the US for tests that, if they are real, should be available in AU, but you miss the chance for a consult at some of best cancer centers in the world, places that are home to real groundbreaking research.

You talk about your immune system, but seem to not understand its role in cancer treatment (you would not be alone in this, as it is a bit counter-intuitive). You hawk liver health, but ignore what an amazing organ it is, and somehow never acknowledge that some here have had half the damn thing removed yet seem to have great liver/immune function!

Here's a question: Since Folfox, have you been more ill than you were prior (malaria does not count here)? Are the traditional, proven, measures of immune system function up or are they down?

BTW, Gawler is an Australian phenom, he has no foothold in the US (we manufacture our own, as do most countries).

As to my day, well I'm contemplating my mortality, which is probably why I am bothering to respond. I can only dream of being as lucky as you, millions in assets, in great health (per you, probably the best in your life), beautiful children, a loving wife and a family business. Yet you seem to spend all of your time worrying about what MIGHT happen, posting every little bit of whatever it is you heard and (mis)understood in the last 24 hours. You seem to have taken up your disease as a hobby, but with a religious fervor, where it is consuming every waking moment of your day. Are you aware that you are one of the most prolific poster on this forum? Since you joined you have posted an average of five times every single day, and there is not a day that seems to go by where a thread you started is not on the front page! By comparison, I post an average of twice per day! Were I you, I might check in here every week or so, but I would be focused on living, watching my kids grow, dancing naked in the moonlight, hell, I would be focused on anything but the cancer. Oh sure, I would have regular checkups, and I would do some of the simple things like exercise, diet and aspirin, but I would not give up one minute that I could be spending with my family to enrich some guy who is running a seminar!

But that's me, not you. And you are free to do as you please, spend as you will etc.

Can I ask a couple of favors? One is to recognize that, while this site has a worldwide audience, the bulk of the members are in North America. When you tell us where you purchased something that retailer is not available to us. When you quote a price, the cost is in AU$ which is different from US$ or CA$. Just an acknowledgement that you are quoting Aussie pricing would be nice. Another would the use of the word loose when you mean lose, it is a common error, but it happens to be a pet peeve of mine.

Lastly, could you find the time to type your posts into a good word processor and letting it do a check on grammar and spelling? Then you could paste them back into the thread. Some of your posts are like trying to understand someone who does not speak the language and it can be quite painful trying to read them.

Thanks Pete. Sorry to be a bother, and to debbie downer on your thread. You asked the question though, so I expect you wanted honest replies.

Blake

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Ignore the answers, as they do not know reality.

Be well,

John

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

For making me smile!

Hope you are well John (as well as can be, given the circumstances),

Blake

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Personally I like hearing everyone's comments and personal experiences. It's all for the greater good.
Nice to see you back John23

Minnesotagirl
Posts: 141
Joined: Sep 2011

Blake,

I see on your home page that you have a dark sense of humor...well I have to disagree with you on that...I think you are just plain "dark" minded! Ease up a little bit on people's faults, opinions, etc. ~ I think we should be here to support one another, not critique.

"Minnie"

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

What was that? Sounds like faulting someones opinion. Pete gave his opinion, Blake gave his. I think that the reason there is a ying and yang is because there is a ying and yang. I think the ying requires the yang!!
Winter Marie

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Amen, baby!

It is the way it is!

Stay well,

John

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

Two smiles!

:-) :-)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Hi Blake and everyone,

As the politicians say no such thing as bad publicity.

If my CEA was zero do you think i would send my blood to greece, my hair to germany and my brain to the usa. We have seen too many here regret not pursuing alternatives earlier in their recurrences. that left a firm mark on me. PM me if you want the names.

Do you even know what heavy metal poisoning is, its impact on our immune system, brain function etc, well you can clearly see the impact on me of this cancer.

I don't take the diagnosis very well at all, and while i have breathe i will fight any and every way i find and am advised. Yes advised by the best doctors, naturopaths around me. I have not taken one supplement without direction. I have had lots of directions.

My days, are my days and yours days are yours. We can spend our time and money how we want.
Free will is free will, we are not controlled by doctors or disease or each other.

If i want mcdonalds i will have it, if i want vitamin c i will have it. our body , our treatment. If i want to post, I post. If you want to reply go for it.

Some of your points have merit, some i disagree with as you know.

I have outined my dream for a more effective multidisciplenary team with the assumed benefit a wider range of skill sets will improve the outcome for us colorectal cancer patients.

Your answer is NO. Fine I appreciate you and your reply. I always do.

The therapies I share have all been at least subject to one human trial, the result maybe of some interest to some, thats all.

I appreciate you and your reply, but don't want to argue point for point about my stuff when i just wanted to discuss ways in which we could improve multidisciplenary team structures. After all we are the primary users, of these colorectal support teams. Some of us use naturoapths and they are excluded. While interrgative onc now exist but are rare.

Its late again, sweet dreams everyone from downunder.

Thanks for everyones responses, it was just an idea, thats not worth any ill will here.

Obviously i think a dam fine idea. This will be my last reply on this post, others are free to comment hopefully around the goal which is can adding alternative services to our care team improve our odds of survival.

hugs,
pete

northernlites
Posts: 96
Joined: Jun 2011

Actually Pete, I think you are doing a great service to your family. Your research may help one of your kids one day if they are diagnosed with this ugly disease.... I believe it also teaches them the quality of good diets and excersise. They are still young enough to gain great knowledge from your experiences. I love reading your posts!

Tessa

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

but there's enough blood already.

If one is doing 6 treatment protocols at the same time, it's impossible to say what worked and what didn't work. If you're feeling good, then that's the bottom line and what really matters.
-phil

There's so much fodder in here I wouldn't know where to start...IF anyone is using Microsoft's Internet Explorer browser please consider FireFox or Google's Chrome browser. The spell check stinks on IE.
John... Too funny!!! You left out the word "YOUR" though when talking about reality.
Please try not to discount facts, they can actually help people at times.
Be well

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