CSN Login
Members Online: 9

Costs of Conventional vs. Alternative Therapies

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Smile -- Cynthia

This seems a useful discussion ... 

I'll start .... my only experience is that of having standard medical insurance through my husband's employer when he was diagnosed. As in most standard U.S. policies (I think) there is a max out-of-pocket expense.  In our case it was $3000 annually, thus after we paid the deductible and we reached the maximum co-pay ... we paid zero for the remainder of the year.  Generally, we would hit this maximum within the first two months of treatment each year.

Hopefully, others with more knowledge of Medicare or Medicaid and those from countries with a more socialized medical system can post with their experiences. 

Our family would not have been able to afford expensive alternative treatment at the beginning of my husband's diagnosis without selling our home and downsizing into perhaps a small apartment or moving in with family members. When I posed this question to my husband ... would he have taken any and all money that we had to attempt alternative treatments ... his response was absolutely not. 

Life choices and situations are so different ... I asked him would he do this if our child was ill, like Tony, and he said absolutely yes.

It is not the personal decisions that someone makes with their money or their treatments that I find disturbing ... it is the discussion of one's excess wealth that has seemed sometimes insensitive when many on this board are struggling not only with their cancer diagnosis and treatments ... but, with serious financial concerns.  Also, there was the insinuation that those who would not sell the farm for alternative treatments were not seriously interested in their health or well-being.

Does this deserve a thread or should we drop it? Seems an important topic if we can keep it civil. 

 

Lovekitties's picture
Lovekitties
Posts: 2926
Joined: Jan 2010

Each person has to make their decisions based on personal abilities and resources.

If there was an unlimited fund of money for each of us for medical expenses, would it change our decisions?  Perhaps and perhaps not.

Each person has their own beliefs in what type of treatment plan they feel they need to follow.  That they differ from another should not be judged.

At the end of the day, each of us must feel comfortable with our own decisions, even if they are not what someone else would make ,and be able to wish others well on their chosen path.

Marie who loves kitties

very worried husband
Posts: 86
Joined: Feb 2011

If I feel someone's post '' INSENSITIVE'', I would close my eyes by not looking at what one has to say....

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

There have been many discussions through the years as to whether we should request the tone of posts to feel safe for all members or whether we look the other way when a member says inflammatory things.  

Forgive me if it sounds like I am trying to censor your comment, I do not mean to -- you have every right to post your thoughts -- but, maybe it would be best to start a new thread and those who wish to repond may.

Thank you. -- Cynthia

 

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

TU

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Thank you for reminding us to wish others well and try not to be judgemental of another's chosen path even if it differ's from our own.  I think this board does a rather extraordinary job iof remaining open and it is only when the tone of post are troublesome that we get off track.  Thank you for always keeping it cool. -- best, Cynthia

John23
Posts: 1832
Joined: Jan 2007

 

That’s not going to be easy! (btw, I totally agree with your theme!)

 

There’s one thing that bothered (and still bothers) me about all the “alternatives” presented on these forums: It’s the cost of the “alternatives” and “supplements” that so many are overspending their budgets on.

 

There seems to be so, so many posts talking about “natural” supplements that cost more than one’s typical week’s worth of groceries. They make it appear as you noted:

 

Our family would not have been able to afford expensive alternative treatment at the beginning of my husband's diagnosis without selling our home and downsizing into perhaps a small apartment or moving in with family members.

 

I find that to be the average reader’s understanding of what to expect for costs. And especially so, after reading of trips around the Globe to receive the special treatments by some of the more affluent here.

 

Please let me set some things straight? You don’t have to go to China to use Traditional Chinese Medicine.

 

The herbs I bought and used for six month intervals, had cost between 5 and 6 dollars a pound. The list of those herbs are on my “profile page” under the “blog” section. A pound lasts an average of a month and a half. My list’s total was less than $100 per month.

 

I posted links to the Syracuse Cancer Research Center (NY), and their Hydrazine Sulfate information. They do not sell anything; you can’t buy HS there. I bought two bottles of it (enough for full treatment) for $30 each.

 

Although I’m not into taking “drugs”, HS would be a “last resort” if I found the herbs or TCM was doing the job for me. Read about it at the SCRC website; you may be amazed.

 

The herbal route is safe when used as directed, but I strongly suggest one has a TCM physician or at least a qualified herbalist to call upon; self-medicating is never a great idea, but it’s do-able….

 

Does it work? My present western medicine physicians seem to think it did. But I have absolutely no “proof”.

 

The bottom line? Alternatives do not have to cost a lot. A used “Champion” juicer (they’ll juice  brick) costs an average of $100. A bag of “day old” fruit and veggies costs a few bucks and will last at least a week.

 

You don’t have to fly to Timbuktu for a months worth of 20~30k treatments. If one can afford that, jolly good.

I can’t, and I refuse to think that I’m going to die if I don’t sell my life insurance, my home, car, and get whatever I can get for my son….

 

I’ll do the herbs. Maybe that $30 HS stuff…. If I have to.

 

Alternatives do not have to be expensive; you don’t have to spend  fortune to survive cancer.

 

 

Best wishes to all for better health,

 

John

 

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

you provided good information.  You get extra points.

With regard to TCM, I think you have always tried to help folks understand that this can be done while having conventional treatments should they feel most comfortable doing that and does not have to be a stand alone treatment. I agree with you that alternatives and complementary therapies do not have to cost a great deal and are within the range of most. I guess I was thinking more of the $200K+ range that has been discussed for some treatments.

You know ... this might not be such a good post ... if it riles up anybody I will likely just remove it.  I really was very curious though how others deal with medical costs and decisions regarding treatment.  The post may not have a strong enough message to be discussed without inviting controversy ...  

I haven't had enough coffee yet for controversy. Wink -- Cynthia 

manwithnoname
Posts: 390
Joined: Jun 2012

I would not have reached for an alternative option at first, all of our faith went into conventional medicine, that's where we put our trust and faith, like too many others it failed. We don't relish the idea of selling everything we have for a 'chance' at some unproven or experimental treatment, we may go on a clinical trial if we meet the criteria, it still means a massive disruption to our life.

Also some cancers grow faster than others, I don't believe any 'soft' treatment will work with a fast growing tumour. 

The 'alternatives' we are using range from very expensive immunotherapy to fairly cheap off label drugs and supplements, we will never Know what (if anything) worked.

I was born in the UK, we have free medical, no one is turned away, Israel is more like the US system, for now it has been good, I believe no country has a perfect system, yet...

In an hours time we have an MRI, like Schrodingers cat the 'reality' will unfold shortly afterwards and with it our future and treatment options.

BTW, this topic is a moral and ethical minefield. :-)

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

original posts said ... for our child we would give up everything.  I know you and your family have come close to this to help your son.  

Best to you on this day of all days. -- Cynthia

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

to give you guys a break, Tony.  As I said to Devotion in a pm, the universe doesn't seem to listen to me much, but come on...just this once?  Please keep us posted.  Despite the disagreements at times on the board, one thing we can agree on...we all want the best for your boy.  AA

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

I went to an Alternative Doc several times. It was $60 a visit.  When he found out that my cancer was bad, he reduced his rates to $40.  People will work with you.  My accupunture Doc did the same.  The Massuse went down to $35 from $65.

 

When we are friendly and show a need, people will work with you.  That has been my experience.  In my business we never charged handicapped nor money strapped elderly. I would usually do those service calls, and leave a few business cards.  (I was an Audio Engineer and had an Electricl conracting company also. We would get asked to replace high light bulbs or replace  a balast in the kitchen, replace batteries in remotes, etc...)

 

There are many goood nutrition sites that offer good advice on anti-cancer diets, foods, supplements, etc...  This is where I went with my own self treatment.  I got my PET scan back today.   My mass in my colon is almost non exsistent!  None of the mets showed.  None of the blood markers came back positive. We contacted UCSD for our appontment in a week. Life is good here!

 

Best Always,  mike    

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

although we did change to a different plan right before I got sick, and of course it was a plan that had much higher out-of-pocket expense.  We pay about $6000 per year for our deductible, and we have co-pays of $30-60 on most visits.  But when you consider what has been spent so far on chemo and surgery for me, it's been a good deal overall.  I realize that for many people, even $6000 is too much.  I wish we had a better system for making sure people could get the care they need without forcing them to choose between their health and the many other things they require to exist.

As for the tone of things, I think ignoring stuff is not exactly helpful.  Personally, I feel that when members make their feelings known, if they do so in a positive and respectful fashion (as the OP did in this case), it can help the forum be a more positive place for everyone involved.  AA

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I am also lucky enough to have decent insurance...UHC.  We have a $3500 deductible for me (7,000 for the family)and $40 co-pays for specialists.  I think we have it our maximum out of pocket for me for the year...I just received 2 checks from the insurance co for about $175 each for prescriptions!  We are getting ready to go to an appendix cancer specialist in the next couple of weeks.  part of our decision on which one to see first (we may seek another one) was based on finances.  The plan my DH's company has does not cover travel while seeking medical treatment...so we decided to go to the university of Maryland ... Just about an hour's drive.  many people have recommendEd MD Anderson in TX (we are considering it) ... But we would have to pay for 2 flights, hotel for the 5 to 7 days that they want us down there for an evaluation and airfare for one of the grandparents to come and stay with the kids.... Not to mention return trips for me if they do come up with a treatment plan that requires surgery.  We just can't afford all of that right now. I am hoping that if the specialist recommends HIPEC that we can get it done before the end of the year...since it would be completely covered.

one helpful thing for us that I did was that I set up a payment plan with the oncologists office and the hospital and the facility where I had my CT scan done.  they all agreed to take monthly payments and none of them are charging us interest.  The plan is to have everything paid off by the end of the summer.

alex

wolfen's picture
wolfen
Posts: 1190
Joined: Apr 2009

I will probably always complain about insurance premiums, but without insurance we would already be in the street.

Being older, we have Medicare(hubby has had it for many years, due to disability), and we have UHC(from my former career). Like others, we have a $1,000($3,000 family) deductible with office co-pays. I also make payment arrangements with various doctors & institutions. Since the first of the year, hubby has 102 claims and the deductible has been met. We also have a mail in pharmacy program for long term meds & I find that Walmart is sometimes cheaper.

Selling the "farm" would not be an option for us, as the farm has drowned. I do like the idea of the free medical coverage utilized in other countries, but am not familiar with the quality of coverage offered. As far as I know, those of you that have this option are happy with it. Hubby has taken a few supplements over the years(pre-cancer) and they were not too hard on the budget. I have just resigned myself to the fact that I will never be debt free, will lose my home in the future & this is how we must live to survive. This is not meant to be a depressing statement, just a reality.

Luv,

Wolfen

bspangler47's picture
bspangler47
Posts: 140
Joined: Sep 2010

hi, its been a few months since i have posted.   i am retired military n have tricare plus medicare n i am covered the VA.  i feel very fortunate to have  the coverage.  i wished i would of looked more into the alternative route in 2009.  i will be looking into the alternative route.

luvinlife2
Posts: 172
Joined: Jul 2012

I am so very grateful that we do not have to pay the actual cost of conventional therapies, simply the insurance premiums.  If not for health insurance, we would have been bankrupt years ago and I'd probably be dead right now.  The cost of chemo is outrageous when compared to any alternative treatment.  My cancer agency has invested almost 1.5 million in my conventional therapies over the past 4.5 years.  I think it's absolutely criminal that the drug companies accept donated money for research and then charge such ridiculous prices...especially since there are no guarantees that chemo will work.  In fact, if it wasn't for insurance or government assistance or government health care, conventional therapies would be out of the financial reach for most of us here.

Alternative therapies are cheap in comparison to surgeries, chemo, radiation, hospitals etc.  I don't know why everyone keeps going on about how expensive they are.  Maybe because most of us don't pay out of pocket for conventional treatments?   How many of us have a few hundred thousand sitting in the bank waiting to pay for the next hipec treatment, or liver resection?   What would you do if you had to pay out of pocket for your cyberknife, your folfox, your folfori or your avastin?  How long do you think it would take before the house was up for sale?  I wouldn't even have got to the chemo because we would have had to sell after my initial surgeries and hospital stay.

I don't and won't, begrudge anyone's choices in how they choose to treat their cancer.  It is personal and not for me to judge.  Normally I stay out of these conversations but it's offensive to keep reading statements that those of us who choose to use alternatives are overspending our budgets or our treatments are a huge waste of money.  Honestly, I don't understand why anyone would say things like that.  It's my business how I spend my money and if I want to try alternatives that may help me through this disease then I should be able to do so and not have to read posts that try to make me feel stupid because I choose to spend my money on something different.  I'm not rich by any means.  It's about making choices and sacrifices.  Our house renos are on hold while I try to stay alive.  My husband and kids want me here more than a new kitchen and deck.  So if my Vit C iv's give me more energy and make me feel better after chemo that I can continue to live a decent life (and cook dinner...lol) then it's worth every penny.  Thankfully, my husband and kids don't think I'm a waste of money.

I won't put down TCM despite the fact that it didn't do a thing for me.  It also cost me a lot more than my vit c iv's and other supplements.  Obviously costs vary depending on where one lives.   I would never tell anyone not to try TCM based on my experience or what I paid.  That would be irresponsible as who's to say it won't work for someone else? 

To make insinuations that people who chose the alternative path are affluent or have excessive wealth is just wrong.   I've been doing alternative treatments for the past three years and we live on one income.  We found ways to make it work.  Cancer doesn't care what your financial situation is, rich or poor.  One person here is blessed with the financial ability to seek treatments that are not available in his country and he's continually ridiculed for it.  Put down by the same people who are equally blessed with great insurance that paid for their extensive treatments including incredibly complicated cutting edge surgeries...all available in their own country.  It makes me wonder if Pete had sought out conventional treatment in North America (treatment he couldn't get at home) would people be making such a big deal about how much money he would have spent on state of the art surgeries, treatments etc. 

I would say to anyone who is interested in alternatives, start out small and don't do too much at once.  Find a reputable Doctor who has a clinic.  Do some research.  Alternatives don't have to break the bank account.  :)

lilacbrroller's picture
lilacbrroller
Posts: 272
Joined: Jun 2012

I've been thinking about treatments and these discussions, and I separate the three above. 

I live in the US, so conventional treatment to me means surgery, radiation, and FDA approved chemo/bioagents.  (a)

Alternative to me means herbs, supplements, vitamins, diet and other treatments that aren't surgery radiation and FDA approved products. (b)

In addition, we can go abroad for treatments that are approved by other jurisdictions (ie the EU) but not yet approved in the US.  (c)

Or, we can stay in the US or go abroad for drugs used off-label, which most insurance plans won't pay for, requiring patients to use their own funds.  Chemo sensitivity testing is a large part of this process, to determine (outside of the body) which drugs best attack the tumor. And I suppose so is gene sequencing and custom made chemo.  (d)

Or, we can participate in clinical trials (e)

(a) and (b) are doable to varying degrees for those of us with insurance and modest income; (e) as well, although travel costs might be an issue.  (c) and (d) may be out of reach for most of us.  People with the means have all  options to choose from, and probably even more.

I'm risk averse by nature, so (c) and (d) dont initially appeal to me, but I would like more information about the science of (d). Steve Jobs did (b) and (d) and it didn't work but he started treatment too late.  

I'm using a combination of (a) and (b); I might sell the farm and go for (c). (d) scares the crap out of me and seems too risky. I was rejected by two trials but haven't given up on (e).

 

Karin

John23
Posts: 1832
Joined: Jan 2007

 

Re:

To make insinuations that people who chose the alternative path are affluent or have excessive wealth is just wrong.   I've been doing alternative treatments for the past three years and we live on one income.  We found ways to make it work.“

 

I suppose I oughta’ clarify something?

 

There was no “insinuation”; it was a simple statement of fact. We had an individual that had continually made claims that what he is doing is the only thing that will work against cancer. The costs that cited were excessive for the majority of cancer victims.

 

When we read about the tales of other spending a fortune on “alternatives”; on things like “grape seed extract” and “scorpion venom”; things that most of us would have a difficult time paying for, it develops the notion that all “alternatives” cost a lot of money to try. The fact is, it isn’t the case at all.

 

There were claims that “TCM” didn’t work…. and to my suggestion that perhaps that the specific TCM physician was not as qualified as another TCM physicians might be, was met with a vengeance: how dare I suggest that!

 

The truth is, that there are very competent physicians of every modality, and there probably more that are incompetent than there are competent. It really doesn’t matter if it’s a surgeon, oncologist, or TCM practitioner,

there are good and bad in every field, licensed or not.

 

My wife went to two different “TCM practitioners” while we lived in Massachusetts; neither one helped much, and both charged more than a standard physician’s visit. The TCM practitioner here in Melbourne Florida has treated local physicians successfully for various maladies. My wife did well with him, and he’s resolved my problems with AF, kidney stones, blood clots, etc… So yes, not all physicians are created equal. Some are better at diagnosis that others, some pay attention to their patients, while others seem to pay attention to their bank account more.

 

We all choose the paths we take, and we all hope we chose the right one; the path that worked for me, might be the rockiest path for someone else. But we will never know what will work or not, unless we try!

 

And that’s “my beef”. If the cost of “alternatives” that are said to work by some individuals is extremely high, those reading about it will assume they can’t afford an alternative that works.

 

And…… there are too few of us out here that stick around long enough repeating the truth, to really matter against those that denounce the inexpensive treatments.

 

It’s frustrating enough, that we’ve had two “juicing” advocates leave this forum. And the one or two other TCM  advocates that had posted to this forum, gave up and left long ago.

 

It’s more than frustrating to me, to see so many suffering, yet so unwilling to try something that’s been around nearly four thousand years, and has worked for various maladies for billions upon billions of humans that entire time……. A science that is only now, starting to be taken seriously by the major cancer centers….

 

No, there are no guarantees with using any “alternative”, but your favorite oncologist will tell you the same thing about chemo and radiation. There are no guarantees, period.

 

But….. there are less costly means to an end, than some seem to avoid talking about.

 

 

My hopes for everyone’s better health,

 

John

 

luvinlife2
Posts: 172
Joined: Jul 2012

John, thanks for your clarification.  Here's what bothers me:

"There’s one thing that bothered (and still bothers) me about all the “alternatives” presented on these forums: It’s the cost of the “alternatives” and “supplements” that so many are overspending their budgets on."

This is typical of the generalizations you and others here have made toward those of us who chose to use alternative treatments.  The only fact here is that you know nothing about my budget matters or any of the "many" you refer to.   In fact, I would further venture to guess that the only budget you are privy to on this board is your own, so how can you possibly make a statement that so many of us using alternatives are overspending our budgets?  Your erroneous statment alone, gives one the impression that alternatives and supplements are expensive and unaffordable, and that those of us who choose to go that path are spending beyond our means.   This is the kind of thing that drives people like myself away from this board.  All these little "digs" that quite frankly, get old after awhile.

 

"And that’s “my beef”. If the cost of “alternatives” that are said to work by some individuals is extremely high, those reading about it will assume they can’t afford an alternative that works."

Seriously???   I think your assumption of people, especially "those" of us reading these posts is quite wrong.  I think we are a lot smarter than what you seem to be willing to give us credit for.   I could be completely wrong, but in my opinion, the folks who have found this place are probably also the kind willing to spend the time to investigate a treatment that sounds promising despite what one person has spent.   There are a lot of very intelligent people here who are quite capable of digesting information and making decisions for themselves. 

Personally, I don't care if someone wants to spend thousands of dollars or 30 dollars on a treatment.  I care about whether or not it is working for that person and I am always so happy for people when they have found something that helps in their management of cancer.   I don't come here to push my treatments like some, nor have I ever criticized someone else's choices although mine have been ridiculed many times.

So there was one individual who made a few empassioned statements that he probably should have kept to himself.  He wasn't the first person guilty of this but he certainly was he called out on it, wasn't he?    However, despite that, it appears according to so many posts his biggest sin is the amount of money he's paid for his alternative treatments.  No doubt, if his treatments hadn't worked, you and others would be madly posting about how much money he wasted on his alternative choices.  Interestingly enough, no one ever makes a post about the billions of dollars spent on conventional medicine as being a waste of money when the surgeries, radiation and chemo don't work.  Sadly, another person has left the building taking with him all his interesting info of other options for cancer treatments.  Just like the juicing.

Re: TCM...while I do believe there are many benefits to be had both with disease and general health issues, I have yet to meet or hear of one person who has been completely cured from their stage 4 cancer diagnosis without any type of other medical intervention.  Unfortunately, the people I know personally who made the decision to completely rely on TCM to cure their late stage cancer have passed on.  My cancer clinic is full of immigrants from China who believe conventional medicine will cure their cancer rather than the traditional medicine of their homeland.  Go figure.

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Thank you for putting this so well, Luvinlife. These are my feelings exactly.

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

TU

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

have typically been filled with people (myself included) being very supportive of him.  I don't think he's been "continually" riduculed by any means.

He did get some flack for calling people here at CSN "sheep", stating that we don't "care" about our own survival because we don't jump on an airplane and follow his example, comparing people eating sugar to heroin addicts, and numerous other inflammatory comments.

It's not the specifics of Pete's journey that bother me.  It's all the unkind editorializing of virtually every other cancer patient in the world that I find disurbing.

AA

John23
Posts: 1832
Joined: Jan 2007

 

For typing so eloquently what I was attempting to put into words.

 

 

Best wishes,

 

John

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

so AA and most here, well I feel like i have been continually ridiculed here ( hundreds of times at least, if not thousands ) and ignored by many of the old chemos here. thats fine, when they had the chance to put the knives, they went for it. I am human, I bleed like everyone, leaving the hurtful subgroup here to its own devices my clearest way of surviving. My survival instincts are well developed.

maybe thats a side effect of long term chemo. To be balanced i have also had plenty of support from many here, even the ridicule has been positive, i made it positive. I had developed the thick skin and often had to research my therapies to defend them from constant attack ( actually before your time here ).

not to many negative complaints about the sheep analogy. i thought it was such a powerful and effective analogy. alas it back fired, then again at least i tried in a clumsy way to explain why chemo and immunotherapy are largely mutually exclusive to my knowledge and experience.

lets look at my posts as a big experiment in human survival. I have presented a potential way for inoperable stage 4, where none besides chemo for life existed, however long life maybe.

I have been amazed at the response to my therapy success, I clearly see how different  I am in choosing my therapies. Many of my new friends have congratulated me on my wisdom, in choosing therapies that work, and for documenting my path so thoroughly. I put all that effort in when i only had a dream of success. I have a hand full of friends who really appreciate my story and i guess the message i feel it tells. I have many here I have upset, and I leave you guys alone now in peace to your own research.

I do wonder about reinventing the wheel, but thats everyones own decision. my wheel is well documented.

I guess you call me "unkind" when i was trying to be "kind" , maybe i was too blunt, but anyway I made my points as clearly as I could, they have been washed away like "foot steps in the sand after high tide" , no one here will tell newbies, my story, my set of therapies. so they start on chemo, before trying immunotherapies, a huge mistake according to my research and experience. their survival alas is in their hands.

the sugar and heroin, well its still my opinion. look my kids still have more fanta than i like, i don't have any sugar or fruit ZERO, but thats because i have a serious cancer recurrence risk and I want to shut down the cancer cells energy source, and the growth promoter insulin, etc etc , etc. all this provided in the msk ceo lecture that so few watched.

How do I warn people of what I have learned, I guess just my blog now, sorry but i cared enough to put my beliefs clearly on the table, and what did I learn. the mob behaviour, someone who voices a different opinion gets attacked from every conceivable angle, from spelling , to spending and everything in between.

my greatest consolation was that the science of what my life depends on was not even touched. Not one credible critic of the msk lectures, the ketogenic diet or mercola. I thank god for that. it clearly shows the level of debate in this forum. I guess if you cannot dent the argument, attack the speaker.

my folly was to try and get support here for my attempt at the ketogenic diet and maybe just maybe find someone else willing to do it with me. its lonely being a ketogenic colorectal. not one other colorectal ketogenic friend so far to share progress and failures with. just me on my own, thats fine, thats the way life is.

So time will tell, who was unkind. For the record, I am contrarian not for the sake of it, but that was the only way I could find a way to live. I was as conventional as most at the beginning except for juicing and weight loss and exercise, which started day 1 almost.

if the ultra low carb and or ketogenic diet is the gold standard for treatment in a few years, i wonder how my attackers will feel.

So I am gambling my life on my unique set of therapy choices, i have been lucky. some say, well I wish everyone the best luck. Maybe I have made my own luck, if I have I hope you can also be lucky with whatever your treatment is.

hugs,

Pete

PS if you have any interest in the ketogenic diet or removab, dendritic cell vaccine or any of my alternative therapies send me a pm

PPS if i am attacked in public i feel I should defend myself, I would prefer not to be mentioned here again, unless someone has some positive and kind comments.

I really do take offense to " virtually every other cancer patient in the world " , and that I have been unkind to them. I can just as equally make that statement about all my attackers.

PPPS try and put yourself in my shoes, 12 month death sentence, then you get NED using the newest therapies and diet and lifestyle. I have suggested fellow patients at least research the therapies if they are interested. that so few were interested i found amazing! i still do. If I stop being attacked in public here, I will stop defending myself. Mind you even this entire thread is an attack in a way, i choose to ignore it until my name was mentioned.

 

herdizziness's picture
herdizziness
Posts: 3395
Joined: Apr 2010

Said it so very well.

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Great to see the doctors starting to put a little pressure on these drug companies...

 

http://health.yahoo.net/experts/dayinhealth/cancer-doctors-protest-astronomical-drug-costs

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

is it spending all my  accessible money flying around the world going to conferences and alt therapies inc supplements?  well yes i did, and glad.

i learnt alo about health and medicine on csn and the net, now my doctors treat me with respect because of my resources my money, my focus and knowledge. i have spent 20,000 on extra tests to document my recovery so others who want to learn, can do so, can follow if they so desire. my doctors are presenting recovery at top class medical conferences. 

whats worked for me is beyond doubt! i have documented it in more detail than any blog on the net.

i got my life insurance paid out because i am supposed to be dead in 2 months.

i am ned using the best medicine i could find.

this whole discussion shows the tragedy of medical ignorance and arrogance. you can think about how this applies.

i have presented my way to healing and been criticised because i want to save many and help many.

lots of colrectals are getting my help and prayers, not many here nowdays. a few late stage 4 will come and need big miracles.

ted and ren will be helped. my clearest message is holistic healing is the foundation to recovery, not conventional.

and immunotherapy before chemo generally.

in life you get what you pay for. "free" conventional is very costly in terms of lives lost.

Non conventional is excellent value for money in my case, and many others.

the tragedy is cancer patients are fed half truthsinitially when diagnosed, for many its to late

when they realise they have been conned.

i wish everyone the best health, if you are interested in my experience pm me.

i have faith in the world class therapies i have had not those outside of germany.

i have no resources for debate and argument, just my healing and the healing of my friends.

a majority of the therapies i have tried are cheap or free. diet, rest, exercise, meditation, sunshine, fasting.

as my illness progressed i spent more and more to find a way to health beyond chemo ( which clearly kills your immune system and mosts best chance of survival ).

 

 

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

Why do you consistently compare your experience to (almost) everyone's experience here? It's apples & oranges. No one here gets "free" treatment, we pay for health insurance and pay taxes etc.

I'm glad that what worked for you worked for you but again, you're almost always going on the assumption that your route is the only way and there's a 100% money back guarantee that everyone will be cured.

It's reckless at best to be making those assumptions. Doesn't that ever dawn on you that there are other routes? Has it become how it appears, it's My-way or the Die-way?

I still want to believe that you wish to help others but I truly believe that somewhere you've gotten off-track and now if everyone's not 100% behind you we are somehow the enemy.

Cancer is the enemy, not us with our differing opinions Pete.

As far as your question "what's excess wealth" your own comments that follow that question give the answer you seek. I'm very sorry that you had to show your doctors your wealth in order to get "respect" that all patients deserve.

Good luck...

Be thankful that spelling didn't count! 

:-)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I honestly don't know phil, i have just said, what i tried may work. it may help if you stairring palliative chemo in the face like i was and many here do every fortnight.

i just have my opinion and experience and present it. my hope is that whats worked for me keeps on working. i have faith in the keep on trying therapies approach.

if its not working move on, dont get stuck in a steady down spiral of chemo. dont preclude immunotherapy.

i am human, just like you and all those here doing conventional. my dna is 99.x% the same as yours. the argument what works for one may not work for all

i am so glad god was not an english teacher or i would be in trouble. more trouble than i already am. 

what my doctor respected i suspect was the spend whatever it takes to get me well. i quickly formed the opinion they were honest and reputable. i had a good vibe and said go for it, save my cancer ridden ass. i always suggested more tests, more therapies. can we do this, can we do that. well its been done so far. 

alas phil, i am calling it the way i see it. i have left all those doing chemo in peace. i chime in here very infrequently and this post caught my eye as it seemed directed at my experience.

if these style of therapies, that have helped me, have the potential to help others, i feel duty bound to proclaim it loud and clear. I was on voice of america this morning. i am trying to be diplomatic and considerate. but its hard when you are an elephant in the china shop.

its past midnight in istanbul, i got to sleep.

i sincerely wish everyone here the best health possible and i have clearly presented my therapies and experience.

"removab" works for most colorectals from what i have been told, to what extent, thats up to god and each of us and the state of our immune system. 

the battle for our existence every and any tool at our disposal is a potential weapon against cancer, nothing wrong with the brute force approach. in that context what ans said above about "blown a ton". well thats his opinion, its not mine, i think i very wisely invested every cent.

as far as i know it, i have had the most dramatic turnaround out of all the doctors i have met at the medical conferences. 

its ironic that i am more inspiring for the alternative doctors seeking ways to make immunotherapy more effective, than most of my fellow cancer patients. I guess we have

a health system that delivers the terminal message very clearly to stage 4. 

now i think about it, its definitely not my way, its definitely not chemos way, lets just say somewhere in between, we each may have a way through this illness, that we have to find. This is based on personalised medicine and that we are all so different including our tumours.

if someone wants to "sell the farm" or whatever trying i will be the first to encourage them,

if someone wants to "try the ketogenic diet" i will also encourage them,

if someone wants to "try chemo" i will also encourage them and pray it works, ( but then we are asking for a miracle )

from my experience gods given us an immune system that can work and function, even when its been folfoxed ( like mine ) and it still could eat my tumours.

for those trying conventional first , and i was one. 

just keep on trying therapies and learning until you find something that works for you.

maybe the fact i am a mutant like lisa42 and many others here and many of my other colorectal friends. that i went extreme very very quickly into the stage 4 battle as developing multidrug resistance was something i had to avoid. so chemo is defintely precluded. te rest is history and removab, tace and dendritic cell vaccine still offers the best set of therapies for stage 4 colorectals.

we have all come to far not to call a spade a spade. if i am too out spoke then i am sorry, skip my opinions and do whatever you want. if you are interested read my blog, or listen to me on voice of america, the health channel. i am trying to be more diplomatic.

I sincerely hope and pray that i am right and most here are all wrong about your assessments of my therapies and my message. As whatever "my way" is its a valid set of sound medical therapies that at least has curative potential for stage 4 colorectal. if i don't advocat it, who will ?

A prayer for me, for Ren, for Ted and a few other colorectals would not go astray. we will all know soon enough if "my way" is worthwhile. I will point out that none of those going to hallwang are doing "gcmaf probiotic yogurt" or have sufficiently detoxed to the extent i did. i have once suggested here that it might be prudent to try most of the things i tried in the first 10 weeks of hallwang. then the only variable will be genetics, epigentics, health state on going in ( that includes detox status )

my laptop battery is dieing and i must go

hugs,

pete

ps for the record john23 i tried tcm seriously for about 2 years and i may have helped but did not cure me, i moved on, your presenting tcm as a curative therapy is misleading of many. i know of no late stage colorectals who have been saved exclusively by tcm. my tcm practioneer is arguably australias best. i pm'd my herbal mix to you for comment when things started to get bad. just for the record i tried tcm almost everyday of the 10 months my cea was climbing from5.9 to 81. it kept rising desipte drinking that god aweful tea three times a day. i feel as the only other tcm consume active on csn my exact experience would serve as a clear warning about tcm. if its not working after a few months move on, if not faster. i am glad my life insurance paid out, that i went to the worlds most innovative medical care based on immunotherapy. maybe all my tcm helped keep me well enough for the immunotherapies to work. but it did not work on its own, thats my experience and warning to all new commers.

herdizziness's picture
herdizziness
Posts: 3395
Joined: Apr 2010

Would you say " it's not my way or the die, but dam maybe it is, I Hope"???  you hope your way Or we die way.  Gee, thanks Pete.

I'm  just going to say it aloud what your writings brings to mind. Narcissistic way of thinking there.

hugs,

Winter Marie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

my way represents the only potential way to recover from inoperable diverse peritoneal, liver and lung mets.

I hope my way works, because existing therapies don't offer hope. Thats why I hope!

herdizziness's picture
herdizziness
Posts: 3395
Joined: Apr 2010

My conventional therapies offer me hope, I was given two weeks without chemo, 4 to 6 months with chemo. My CEA was over 2000, I was in dire straits. Over 3 years later I'm still here.  I don't need to be told my therapy doesn't offer hope, none of us do.  You can stop telling us we don't have hope, and aren't given hope, WE have plenty of hope.

Winter Marie

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

has given me years of additional life (although even with 16 months NED, I still wouldn't say the word "cure"...we've all seen how cancer gets the last laugh).  I imagine it must be hard on any newbies here, reading how the only treatments that might help them are not readily available, and the things that are available, and being recommended by their docs, are all hopeless scams.  AA

renw's picture
renw
Posts: 282
Joined: Jan 2013

If you are lucky enough to be stage 4 and qualify for surgery, then you have hope. If like me or pete, surgery is not an option, and you are only offered paliative chemo for the rest of your life, traditional medicine offers no hope.

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

Nine years ago surgery wasn't an option for me* due to large tumors in my liver. I went on Avastin for 5 months (it would have been 6 months but it was approved 1 month after my DX) and it shrunk my tumors and gave me a safe margin for the resection.

One can argue (and no doubt will) whether Avastin is chemo or traditional medicine or not. I have no doubt that if I had been in a position where tradition medicine wouldn't work for me* that I too would have sought out other treatment options. 

Hopefully we all can find treatments that help each of us succeed or life a quality life but to lump everyone & everything together like it's all the same makes little, if any, sense*.

*just trying to give examples of how we all resond differently.
I want to believe that people often don't really read what they're about to post.

renw's picture
renw
Posts: 282
Joined: Jan 2013

Avastin is a biological treatment, a monclonal antibody, so yes it is not a chemo agent.

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

I really believe that if you used the two words "for me" after your comments there wouldn't be these ridiculous fights over this topic. You seem to often forget how unique cancer is, therefore so are the effectiveness of treatments for each of us.

For me, that would make a big difference in what you have to say and how you come across. It leaves room for the differing opinions/options that there are for everyone.

John23
Posts: 1832
Joined: Jan 2007

 

 

You know well, that I feel the way you do about “western medicine”, and how I advocate using valid alternatives along with, or alone, in our fight against cancer. I trust in TCM herbal treatments, only because I have experience with it.

 

That aside…. I am posting this comment under yours, since I don’t wish to start a fight with a “former friend's post”, and my comment is generic enough that it should not insult you, or the route your decided to take.

 

So….. Here goes:

______________________________

 

For the Enquiring minds:

 

Avastin: “Chemo or not Chemo”?  (that is the question)

 

From the horse’s mouth: http://www.avastin.com/patient/gbm/about/differences

 

Likewise, the answer for Erbitux (Cetuximab) is……..

Here: http://www.andygaya.com/chemotherapy/chemotherapy-erbitux.html

 

 

Both medications have –not- been tested for carcinogenic properties with animals or humans, since that is not one of the required tests for marketing the substances.

 

If what one is using, is working in the fight against cancer, that is all that really counts.

 

The good must be weighed against the bad in all cases; we all too often neglect to do in-depth research, and just as often neglect to pay attention to it. We should know in advance, if the side effects or long-term damage is worse than problem the medication was to help resolve.

 

(I am as guilty of that, as anyone else. I recently had Pneumonia and had been prescribed “Z-Pak”. I knew in advance, all of the side effects, long-term side effects, and possible permanent side effects. I didn’t listen to my instincts, and took the antibiotic anyway. I suffered nearly all the side effects initially, and am now seeing what I hope will not be the permanent ones. The manufacturer of “Z-Pak” now states that there have been more hazards noted from recent “aftermarket reports”. More simply? Either they marketed the antibiotic without fully testing it, or they knew about the more dangerous side effects and simply did not report it. My physician isn’t sure it resolved my pneumonia, but a second treatment of the same antibiotic is the normal route the manufacturer suggests)

 

In my opinion?

 

The decision of what route to take to resolve our problem with cancer is an individual decision, as well as it should be. But educating ourselves with published data and arming ourselves with enough of that published data to make a choice, isn’t always good enough……….

 

We should always listen to our inner being; our basic instinct for survival. It is that basic intuition that all of life uses to remain alive against all odds. If what one is about to do “doesn’t feel like the right thing to do”, perhaps that inner feeling is what should be listened to. Too many of us listen to those around us, rather than listen to what was given to us at birth, for our own survival.

 

“Trust thyself”.

 

My hopes for better health,

 

John

 

(Be well, Pete. We’re –all- pulling for you, whether you believe it or not)

 

 

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

There are countless definitions for the word chemotherapy. I consider what I've been on as Chemo-Lite but they are chemicals being used as part of my therapy. Are they the most toxic chemicals out there? So far they don't appear to be.  

Noun:

The treatment of disease, esp. cancer, by the use of chemical substances.

John, I never expected you to question whether Avastin was chemo or not :-) I will say that I am very glad to see you including it the list of possibilities as of late.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I go away for a day and look what's happened ...

For my part:

1. I have never been anti-alternative and I have tried to continue an interest and discussion in CAM treatments by suggesting a special way to title those posts so that those interested may notice and share information.

2. I support now, and have always supported, the right of each individual to decide their own treatment.

3. I see the vast majority on the board have been amazingly open, accepting, and supportive of alternative treatments.

4. Never was the issue for me with Pete, or anyone else's, alternative treatment choices.  I don't think there is one person on this board who wouldn't rejoice if Pete's treatments, or someone else's, leads to not only to their survival ... but potentially the survival of others.

5. I do have a problem with Pete, or anyone else, who implies that they are doing it right and everyone else is doing it wrong -- that is simply not respectful, not supportive, not kind, and rather delusional.

6. The issue with Pete, and others in the past, has been the inflammatory and righteous tone of their posts.  For Pete, this unfortunately continues to this day both here and on his blog.  I don't come here, and I will not go there, to be insulted or disrespected.  That is me ... some just look the other way ... I take those things to heart.  

I may regret being pulled back to this discussion ... but, out of respect, honor, and devotion for my very ill husband who is dying from this disease -- I will not sit quietly nor will I ever forgive someone classifying him as one of the pathetic conventional treatment sheep

I wish you all nothing but the best as you navigate this challenging journey and courage to make difficult personal treatment decisions. I will continue to fight to keep this board a safe place for all and if that means calling someone out who is repeatedly disrespectful, well then, I'm your gal. -- Cynthia

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I am sorry your husband is so ill. I have already apologised for the sheep comments.

I have shared how I am spending my life insurance payout, is that the excess wealth you are referring to ? regardless we are all entitled to pursue whatever therapies we believe in and share them here and I think also what we have learned. I only speak for myself, and suggest that if someone with a palliative diagnosis wants to consider "non conventional" therapies then that their right and they should be supported, not discouraged as often happens here for some reason. See "i love thomas thread"

"It is not the personal decisions that someone makes with their money or their treatments that I find disturbing ... it is the discussion of one's excess wealth that has seemed sometimes insensitive when many on this board are struggling not only with their cancer diagnosis and treatments ... but, with serious financial concerns.  Also, there was the insinuation that those who would not sell the farm for alternative treatments were not seriously interested in their health or well-being."

I only advocate "selling the farm" for potentially effective uproven therapies in a palliative context, alas, that a majority of stage 4 colorectals.

You desire to keep the board a safe place needs to be balanced with promoting the best achievable health using appropriate therapies. whats disrespectful about telling my story and the chemo precludes immunotherapy ?

I will continue to try and promote effective therapies based on the latest science that are accessible that I have personal experience with. If someone seeks to dissaude patients from accessing life saving therapies, well then, I'm your guy. - Pete

PS I the interest of keeping this civil, I have made my point and will not comment further in public. PM me if you want to.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I have a very ill husband and you just wrote a nasty message to me that I think is out-of-line. You need to reread my post.  I wrote that I supported everyone, including your right to seek treatment that makes sense to you.  

Pete, I find you a very disagreeable person and I do not wish to have any communication with you. The sheep comments are just one of many comments that you have made that are spiteful and hateful.  Most of the individuals on this board do not realize the mean-spirited things that you have said on your blog or other boards about the people here on CSN who use conventional therapy, or even other alternative therapies than what you have chosen.

I come to this board to voice support, encourage kindness, and promote respect and I also come here to get support, kindness, and respect -- that is what I mean by creating a safe place for everyone.  

Do not try to intimidate me Pete and absolutely do not make it seem as if I have not been supportive of alternative treatments.

With all due respect, please leave me alone and kindly do not write to me.  Pete, my husband is dying ... do I really need a person like you getting testy with me?

No.

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

I do think about you and your situation...you offer such wonderful support and caring to others. You have good ideas for topics and are a wealth of knowledge to those of us with questions. Maybe now we need to think of and support you....so sorry it is such a hard time for you and your husband....thinking of you~Ann

John23
Posts: 1832
Joined: Jan 2007

OK, OK, OK

Can we all just (((((HUG))))) now?

 

(oops... are my pants wet?)

 

Best wishes youse guys.

John

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Thanks though for trying to lighten things up a bit. -- C

P.S. And why did you wet your pants?

John23
Posts: 1832
Joined: Jan 2007

That last one was a reply to Pete, not you, Cyn.... It just fell where it fell...

Oh... and I was deep sea diving. Pants are wet, and that's a clam in my pocket.

 

Oh well....

Better days are coming! I'm hoping they'll all be healthy ones for all of us!

John

 

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I started this thread and I am going to end this thread.

Tomorrow I will ask Greta to delete it.

It was not my intention to start this up again and I requested everyone to be civil.

Let's all get back to helping each other tomorrow morning.  

I don't need this.

Nobody needs this.

I mean really folks we don't need this.

I take full responsibility for starting this conversation and it has gone in a totally different direction than I thought it might ... my mistake.

 

tanstaafl's picture
tanstaafl
Posts: 956
Joined: Oct 2010

Cynthia,

I am sorry this thread has deteriorated.  Let it be, but please don't delete.  Others' contributions are not retracted and made to all.  

 

Honestly sometimes I feel like I am getting Alzheimers from deleted threads when I go searching for something.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

The thread will stand as is ... I am just sorry that it took a bad turn, I guess it was a bit risky. I had just hoped that we could share some thoughts openly without the rants, but everyone has a right to post and voice their feelings so it is what it is. -- Cynthia

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Cyndy (sp????), I am sorry about your husband. You are right about not needing the extra stress of this. You have not offended anyone with either conventional or alternative practices. I use both, and I appreciate you being positive about both. But, I didn't know your situation, and I just wanted to tell you I am sorry your husband is going thru this (and u too). I hope he is comfortable (as comfortable as he can be, I mean).

Judy

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network