Costs of Conventional vs. Alternative Therapies

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.

tanstaafl said:

cost cutting with all the comforts of home

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.

 

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

renw said:

I have seen 6 oncologists now

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.

devotion10 said:

Yes, tanstaafl ... you are right.

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

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

herdizziness said:

Mine offer hope

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

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 said:

I have seen 6 oncologists now

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.

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

herdizziness said:

Mine offer hope

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

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.

devotion10 said:

Thank you Judy ... very much.

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

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

renw said:

If you are lucky enough to be

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.

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.