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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. 

 

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

I appreciate your words of support.  It is odd, I suppose I don't reveal much in my posts about my husband and unless one goes to my profile page one might not know our situation.  It makes me feel good to come to the board and try to help others (and then there is my self-defined role of hall monitor lol).  Perhaps it is an escape for me from my world which is at present rather challenging.  I always feel better though after I come here and read all the tremendous support that folks provide each other. The occasional flare-up doesn't deter me, it is a public forum and individuals can say mostly whatever they wish unless it violates the forum rules.   I try to be balanced and open-minded about all these various treatments ... we all have something to share.  I can just hear it so much easier when it is gently handed to me rather than thrown. I do appreciate your taking the time to send me some kind words. -- Best, Cynthia

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

I think of it lik AA...you take what you need, and leave the rest...

I have a notebook I keep. When I come across something on here (conventional or alternative) I put it in my notebook. Then, I know if my treatment is not working, I can say to my oncologist, "Hey, what about this, or this, or this...?"

Judy

annalexandria's picture
annalexandria
Posts: 2170
Joined: Oct 2011

your feelings have been hurt by this situation, and I am truly sorry for that.  If you look back at your threads, you will see me cheering you on from the beginning of my time here at CSN.  I cannot stress enough how much I wish you well in the journey.  I'm going to try my best to stay out of your threads (although this one is actually Cynthia's), but I do feel strongly that your attitude toward those of us who are taking a more conventional path has been lacking in understanding and kindness.  But I've tried to talk to you privately about this and it's clear that you feel that all the fault is on the other side.  Anyone who reads your blog will see how you feel about those of us who follow a conventional path (or even a different alternative path, in John's case).  I base my comment about "virtually every other cancer patient" on both your comments here and on your blog (where you recently said that " to be honest i think these doctors are actually let down by cancer patients not fighting hard enough for survival"...wth, Pete?).

Anyway, I don't need to comment further on this.  AA

ETA I was in your shoes in the fall of 2011, Pete.  I was given a terminal diagnosis at that time.  My life was saved by conventional surgery.

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

be deleted ... I will let it stand as is. Folks can read it and draw their own conclusions. -- Cynthia

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

I have seen 6 oncologists now and I asked each of them the same 2 questions.

1. Have you cured anyone with stage 4 colorectal cancer?

2. Do you know of any stage 4 patient that was cured?

The answer to both questions has always been NO and NO. Now I carefully pick the oncologists I see and they all had years of experience and work mostly at dedicated cancer hospitals. Well over a 100 years combined of treating mCRC with chemo and not a single person cured.  Statstics will paint a rosy picture of a 5 year OS of 5% to 16%. Problem with that statistic is that you have to be alive 5 years after diagnosis, not necessarily cured. If that reality does not sink in, simply open up a 2 year old thread on CSN. 95% of people active in discussions then are not active today. Hmmm I wonder why.

If you have the possibility of surgery, that is pretty much the only curative path. Paliative chemo is a delayed death sentence where if the disease does not kill you, the treatent will.

Sorry to be so negative, but that is the reality. There are miracles and one in about 60000 have a spontaneous remission, but that's a very low number.

Pete I believe is on the right track, and if there is a cure it lies with the immune system. If you still believe chemo will save you, ask your oncologist the same two questions. Since chemo is the standard treatment surely your oncologist cured at least one person right? I realised that chemo fir stage 4 mCRC was a dead end within few weeks after my diagnosis and after monts of research I came to the same realisation as Pete. Like pete I practice what I preach. I am off chemo now despite CEA in the 3000 range, extensive liver mets etc. etc. and am focused on alternate, mostly immuno based  therapies. What I am doing may or may not work, but the mainstream offers a mean OS average of just 12-36 months. I do not find this acceptable.

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

Wall

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

stage 4 five years free? I'll bet the farm that such survivors had surgery to remove the cancer, colorectomy, liver resection etc. And yes I will see #7, #8 and #9 this month, all specialising in immuno based therapies. This will be interesting to compare.

More than one way to deal with cancer? yes there are two ways. You either cut it out, or have your immune system clear it.

PhillieG's picture
PhillieG
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Joined: May 2005

I was under the impression that it was cut out but I do realize that's not always the case. Everyone's different.

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

There are many times surgery is not an option, as tumors are too big. Many people have chemo, the tumors shrink, and then they are able to have surgery. Just throwing that out there. I'm doing both chemo (11th folfox this coming Friday) and an alternative. I had a PET scan last week and will get the results on Friday. I am back teaching half-time, but will return to full-time May 8th. I feel great (knock on wood again), probably better than I have in years.

Judy

annalexandria's picture
annalexandria
Posts: 2170
Joined: Oct 2011

for people who go through the German treatment?  What do the numbers look like for stage 4 patients, especially at the 5 year mark?  I ask this in all seriousness, and I have no idea what the answer is.  Pete mentioned once that one of the doctors there said his response was very unusual, but what is the usual response?  One thing that has bothered me about this whole discussion is the lack of solid evidence and I know you're coming at this from that angle.  When we make the decision to do chemo, surgery, etc, we have access to hard numbers on the success rates.  We all know they aren't great.  But what I would love to know is if the German therapies have a proven track record at doing better. I mean, many folks with stage 4 do reach short-term remission with chemo (which is were Pete is at), and of course the cancer recurrs, usually in the first two years.  What happens with these alt therapies that is different?  What are the five year survival rates?

I'm asking these questions about of genuine curiousity.  If my cancer comes back, as it may very well, I will not be a candidate for chemo.  I will have to look elsewhere for tx, but I would have to be able to sit down with these people and be told (just as my onc did before I started conventional tx), these are the stats for your situation, here's how likely it is to work and keep you alive for 5 years.  

Thanks, AA

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

There are no official stats that I was able to get, but pete being an exception rathar than the rule bothered me so I asked more questions. I was told that pete's case is by far not unique and the immunologist has seen many similar results. Dendritic cell therapy alone, I was told has  a 30% responce rate. Chemo has a responce rate of 70-90%, so the stats are not great. I have also been told that pre-treatment with removab increases the chances as the triclonal antibody binds to the cancer cells exposing them to the immune system. I see the dendritic vaccine as another piece in the puzzle, but I am backing it up with at least 5 other treatments, all diligently researched.

 

annalexandria's picture
annalexandria
Posts: 2170
Joined: Oct 2011

I know you've done the research and I admire you for it.  If I was in your position, I'd be doing much the same, despite the lack of hard numbers.  There are so many studies done showing the efficacy rate of chemo.  For better or worse, they are what they are, and one can decide whether it's worth the hit to the system to try the various chemos, either to buy time or to get to the point where one can have surgery.  I just wish there was something similar for these alternative treatments.  I wonder if the clinics themselves have published anything?   

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

Chemo has very high response rates. I was told 90% by one oncologist, 70% by another. Which ever, its a very high percentage.The  problem with chemo is that it has a limited use by date. Cancer cells are very good at mutating, and eventually first line, then second line chemo will fail. Radiation likewise stops being effective after time as the cancer expresses additional genes to help it repair radiation induced DNA damage. They say that what does not kill you makes you stronger, and that is doubly true for cancer.  Chemo destroys your imune system, and at the same time makes the cancer stronger. A bad combination.

The best scenario is a short cycle of chemotheraoy to hopefully shrink tumours then surgery.  I achieved stable disease with chemo, but no shrinkage. Stable disease is missleading btw. I had tumour growth, but if it is below 25% they class it as stable.  I could continue with chemo and gain maybe another 12 months before my cancer builds up resistance, but then it may be too late to try something out of the box. Either way it was a hard decision as if the alt treatments don't work, I have been told I have 2 months at best.

lilacbrroller's picture
lilacbrroller
Posts: 266
Joined: Jun 2012

Ren - I hope you don't have  just two months, and that you have many more, and that all your research and effort will pay off. Good luck with your treatments

all the best

Karin

annalexandria's picture
annalexandria
Posts: 2170
Joined: Oct 2011

dup

tanstaafl's picture
tanstaafl
Posts: 936
Joined: Oct 2010

Much of the important CAM stuff can be done for $1-2 per day bought discounted.  Generic cimetidine, celecoxib (not yet in a corrupt US market), metformin, aspirin,  vitamin D3, oral vitamin C, fish oil, many potent strength supplements at 3-10 cents each.     

Even IV vitamin C costs can be tremendously reduced on a volume basis with a nearby nurse.  My wife seldom even leaves the house for her IV vitamin C.   Which also is a huge QoL improvement, missing out on those cross town drives.  

Truth is, much of our chemo price structure is a product of medical fascism preventing direct competition.   My wife's UFT chemo pills cost $200 per month for a 5FU-LV type treatment.  This is the nicest 5FU based treatment on the planet, where independent of the cancer action, it makes you feel slightly better.  I know that we're still being screwed 300+% since the asian stuff is not available at Walmart etc (or anywhere in the US, three "siegs" for the FDA).  Xeloda, $$$$ per mo, is the closest alternative in the US, and not so nice.

 

lilacbrroller's picture
lilacbrroller
Posts: 266
Joined: Jun 2012

I looked up UFT and it is an actual drug, approved for use in Asia and the UK.  Why isn't it available in the US?  I searched the NIH clinical trials site and found that it is/was being tested for use with colorectal patients. Seems in one test it is being compared to Xeloda, my new best friend. Tanstaafl - how do you buy it?  

http://clinicaltrials.gov/ct2/show/NCT00905047?term=tegafur-uracil&rank=7

I don't understand why there aren't reciprocal approval agreements between countries or bodies (such as the US) that have rigorous testing and approval processes. If a drug is approved in the UK and works, why do we have to wait 12 years in the US for it to be approved???

I did more research on removab, and actually wrote to the German drug company, citing successes in Hallwang as a wonder drug, and asked when it would be approved in the US for colorectal cancer (and not just malingnant ascites?)  I will probably get a form letter answer back, but it can't hurt to raise the issue. 

I'm exploring clinical trials and some things don't make any sense, like a good drug I can't get until I've exhausted all other options. Seems pretty rigid, eh?  Why does Folfox have to be first line therapy? Say removab is approved and really does work, but it's only approved as a third line therapy, does that mean that I can't get it until I've been whacked by Folfox and Folfri first? I'm trying to get my head around the whole sequence of American conventional treatment, and I've learned that there definitely is one. 

anyway I like such threads because I want information about therapies, and also want a place to talk about it. My friends without cancer are not interested! My stage IV breast cancer bud is a good confidante. 

- Karin

tanstaafl's picture
tanstaafl
Posts: 936
Joined: Oct 2010

The FDA isn't planning on approving UFT unless Congress or the president wises up enough to start firing corrupt sr deadwood en masse if they don't start doing their job for the public's benefit.  I can only read FDA's refusal as protectionism for paid buddies. 

As for importation, you have to get a US doctor to sponsor your use, good luck, AND can only bring in something like a 50-60 day supply.   So even if your actual max dose is 2/3 of scrip, that's 90 days or less, before time to go outside and buy more.

 

annalexandria's picture
annalexandria
Posts: 2170
Joined: Oct 2011

is referencing Nazi Germany?  Do you really think we live in a country that is the equivalent of Nazi Germany?  And if you're simply employing hyperbole, I have to say I don't think much of it.  Might be better to find some other frame of reference for comparison.  AA

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

even with a few rough spots. Perhaps it has strayed from my original thoughts, but so much wonderful information is being shared. This board gets criticized for not being open-minded ... but, I have never felt that way. I am always heartened by the kindness of the vast majority of our members. When I come here I sense the courage and generosity of so many who stop their lives for a moment and open up that computer, or tablet, or phone and reach out to others. Touching, isn't it when you think about it ... my appreciation to those who have kindly responded to me through the years and to each other.  Best ~ Cynthia

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

If I get booted off it's YOUR fault!
:-)

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

and right after my sweet post ... well, Mr. Phil I will be thinking of some clever revenge when you least expect it ...

Let's see how long it lasts. To everyone reading this ... there is a secret message in Phil's icon image.  Now, don't be offended, we all know he is a bit of a jokester. Happy Monday everyone! ~ Cynthia 

annalexandria's picture
annalexandria
Posts: 2170
Joined: Oct 2011

that made my day!  Thanks, Phil.

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