I wonder....?

These alternative therapies are probably helpful, but you would never be paying two thousand dollars a dose for Vitamin B. Many doctors' offices don't seem too interested in patients without good insurance and a "yes" attitude. But, to be fair, cancer is more serious than the common cold, to be sure, and I suppose that it takes a lot more serious drugs to "cure" or "contain" it. But many people have seriously severe reactions to these more serious drugs, and they can't predict whether an individual will or not. And, in my case, they couldn't, or wouldn't, even discuss why I almost died from a chemo treatment. Although I have changed oncologists four times, I am still afraid of more chemo, and they still offer it anyway, with no real regard for my objections. NO ONE has offered to explain what happened the first time, so that I am just left with fear of the unknown. They don't care--they care that I don't just say "yes!" I think there is a lot wrong with the oncology field as it is being practiced now, but maybe it is because there have been so many advances so quickly that NO ONE can keep abreast of it! I think malpractice and negligence should include those cases where a patient is left in the dark, with so many questions and misgivings that she cannot accept further treatment without fear and danger of shock!!!

hummingbyrd said:

Hey maggs, I almost died from my 2nd dose of chemo. White blood cells dropped to .5 (should be at least a 4, and never below 1) got bronchitis and almost died from my body's reaction to the chemo. I feel like I was overdosed. When I finally agreed to continue treatment about 10 weeks later they reduced my dosage by 15%, treatment was bad, but not deadly.
I know why alternative therapies are not studied, like you said, you won't be paying $2,000 for a dose of vitamin B. but you know...
THAT'S JUST NOT RIGHT!
Maggs, I'm not shouting at you, I love you dear, and all the other ladies on this site. I'm shouting at the pharmaceutical companies, the government, the research institutions and yes, even the ACS.
Fact is, as ugly as it sounds, if we get cured it's a major blow to the economy.
Now I'm sure the cure won't be as simple as a B vitamin, but wouldn't it be nice if studies show in combination with other drugs the growth could be halted. On the other hand look at Lorenzo's Oil
True story of a father doing his own research on ALD (adrenoleukodystrophy). He discovered 15 years ago this deteriorating condition could be stopped with olive oil and rapeseed oil. The FDA has still not approved it as a drug, you can get it only if you are in a clinical trial (there's one in the U.S.) and it costs $440 for 6 bottles, a 2 week supply, of olive oil! The study has just completed 10 years and the results show this oil prevents progression of disease in 2/3 of the boys with ALD. This disease typically ends in death by the age of 15.
I think a lot of answers to cancer lie in vitamins, amino acids and anti-oxidants.
Course studies have to be done first.
That's all I'm asking, do clinical trials and then report the results.
Did anyone here know cabbage makes Tamoxifen work better? It was news to me. That particular study was done I believe in 1996.
What I don't get is why there is such resistance to this concept. Are we so sure we have to be poisened to be successfully treated that we won't demand alternative options?
The more I research, the more I find out, the more
dismay I feel.
There is a better way, and by the grace of God I shall find it, or die trying; because the way it is now is just not right.
My doc told me a month ago, 'for a patient at stage 4 for 3 years and no chemo since 1st diagnosed I was doing well and surprisingly don't look like I even have cancer'. My thought is, maybe it's because I haven't had much chemo.
Now we each have to make our own choices, and if my mets had been anywhere else besides my bones I probably would have taken more chemo, and may still yet. But first I'm going to exhaust all other more patient friendly options. What have I got to lose? According to the NIH my best bet for the past 3 years would have been a clinical trial.
Yeah, right.
Thanks, but no thanks. I'll explore other options first, while they continue to exploit new drugs.
Go to www.datamonitor.com got it off the FDA website. For $1,600 you can buy a report that will give tips on which pharmaceutical companies are the best bets for new chemotherapy agents and estimate the commercial potential for the VEGF drugs that are being primed for release. They also include "elderly cancer patients-an untapped market opportunity" or "prostate cancer insight- profiting from changing treatment patterns". They are even betting on 1.2 million new cancer patients being diagnosed in 2003. Because of 'patient potential' interest in 7 pharmaceutical companies is high. I pass this on to you because I figure, heck, we might as well get in on the profitable side of the action. I can buy this report for less than the cost of one dose of herceptin.
It's not physics that makes the world go 'round, it's the almighty dollar.
Forgive me ladies, I do have a cynical side. hummingbyrd

Hi Hummer:

I think it's wise to endeavor to become astute in matters of cancer treatment. Cynical? I think not. Rather, it's practical and can even be lifesaving. We must not only question but demand answers, even if those answers are in a "gray" area. As most of us know, there's more in the gray zone with cancer treatment than there is in the black or white zone.

Also, we must not only understand but accept that the same people who can help to cure us are also the same people who can be the wolves in sheeps clothing. The profiteers. These profiteers are not just the drug manufacturers. It's a trickle down effect. Ending not with our doctor's/treatment center's, but with our insurance companies. Everybody wants a piece
(and ultimately takes a piece) of the pie that is our cancer treatment. This complicates our journey greatly. It demands that we become researcher's, advocates, watchdogs and guardians of our own well being.

As with most things in our consumer driven society, "buyer beware". As for government controls...don't rely too much on them. Example:
Agricultural producers use tons more herbicides, pesticides and fungicides than is necessary for good control. Why? Because our "government controls" allow it! The science proves that far too much is used. Fruits and veggies absorb the toxic coctails. Larger amounts are absorbed into the seeds and skins of course and we eat them and then we wonder why we're all so sick anymore, in general. Washing our fresh fruits and veggies helps but cannot remove the toxins contained within these foodstuffs. Does the government take any positive steps to eliminate some of this unnecessary poisoning of our food supply? No. Do they care? No. Why? Big business, of course. Stringent regulations would hurt the producers. Monsanto, Ortho, etc., just to name a few. Agricultural runoof is a very serious health issue...all that excess has to go someplace. Guess what. It goes into our ground water supply, streams, oceans and into the surrounding soil.

So, why should we expect the scenario to be any different with cancer treatment drugs? We cannot, really. We can only arm ourselves with solid information and make our best choices. Because we want to live, we often find our choices very limited. So the truth is that we are in that proverbial position of being "between a rock and a hard spot". Our cure options can kill us, debilitate us or diminish our future quality of life. We sign consent forms stating that we are willing to accept these terms...at least the terms of "known"
side effects and risks. Our government is not into "risk management" necessarily in our best interests, as we all know. They are into "informed consent" and protectionism. Once we sign, we cannot call foul later on, so to speak. It's a win-win situation for the manufacturers and those who administer our lifesaving drugs. Barring any human mistake/error, we've not got a leg to stand on really.

The FDA regulates food and drugs. Not supplements. They don't put funds into trials on alternative therapies because it may hurt their traditional medicinal therapeutic system of profits. As large as the
supplement/alternative/complementary industry has grown in recent years, it's still an "unregulated" industry. No insurance covers it. Our medical doctor's advise us to use "caution", etc.. Some forward thinking, trailblazing docs will actually "recommend" an alternative therapy,(Naturopathic Physiscian's) but few other's do so. The best we can do is find those physician's who are interested in and involved in something other than the traditional, FDA approved/sponsored therapies and feel our way through it. Research, study and talk to other's who've used certain supplements and take our best shot. It's tricky business at best. Some herbal/supplemental manufacturers are unfortunately not so reputable, so caution and research is always necessary. Their statements are the only statements we will ever see on the labels. We will see no qualifications. The other statement we will continue to see on supplement labels is: These statements have not been evaluated by the Food and Drug Administration.

With so many consuming supplements, why does the FDA not evaluate these products? Could it have anything to do with $$$$$, strong lobbying, etc.?

Supplements should not only BE evaluated, they should be studied, as you suggested, in large scale, double blind trials. But this is an idealistic, purist view of things. Not the real world yet. (It would not be difficult to find participants, I surmise) Still, what's "right", particularly regarding life threatening illnesses/conditions, is not what our government agencies are interested in.
Sadly, this is our answer. What's morally right and what the government believes is "right" is, I believe, directly related to how much the profit potential makes their eyes pop! This is just where we are. Not an easy pill to swallow but not likely to change any time soon. We can hope, do what we can to foster change but definitely we cannot hold our collective breaths on this one.
We must also always keep in mind that not everything "natural" is harmless. The two words are not synonymous. Ex: Belladonna is made from the Deadly Nightshade plant but we certainly wouldn't want to eat the plant! So, our own endeavours and caution is our best safe guard when delving into supplemental, alternative and complementary therapies. Having a physician who's knowledgable in this field is even better. But they are few and far between, unfortunately.

Just my perspective and thoughts.

Love, light and laughter,
Ink

Beth, If you think we are getting more then "Maybes" with what the Drs do to us think again. Both my husband and I respect the vitamins and herbs from our ND Dr in FL as much if not more then what the MDs have done to us. My husband had radiation and Lupron for three months and said no more of that treatment as he wanted a life. Our ND has him on many herbs,vitamins and no meat,sugar or diary. I myself am on the same diet and a few diffenent herbs. She is very devote woman and prays over all herbs daily as she is making her batches. Will all of this work only time will tell but I don't feel it is doing any harm and we are both looking and feeling very well. I do follow up with the MDs but don't bother to share what I'm doing for treatment. I still do take Tamoxifen which the ND doesn't like but we agree to disagree on that. Prostate cancer probably could be treated without anything but diet and herbs. Bc she says surgery and then go with what God has given us. I'm a farmer daughter and trust me they over spray and over fertilize everything you eat. Don't even want to think about the antibiotics given to milk cows. If you think anyone is checking this very carefully you are wrong. I lived in MN for forty years and most of the cheese you eat comes from there and it is full of antibiotics as cheese is made from grade B milk that is not checked for anything. Life is one big business and we are not that important as a few people with cancer, more coming down the pike daily as we ruin out food,water and air. Linda

maggs said:

So, how can we change the "one big business" mentality of our lives??? I pray about it, but I think it is not enough! I don't know what we can do, since it costs us money to live and we all have to make our bucks. But it is a very sad commentary on the evolution of human life that it has all come down to only this: how much can we make off that person? I work for little pay and enjoy my job but am slowly going broke. But I still think money should be secondary to making life better. Are we so far down the road that we can't change it?
P.S. Hummingbyrd--did you get a flu shot this year?

Don't ever question if prayer is enough, it is very much so! What can you do to help is a great daily prayer and be open to where God leads you to fight the battle. I agree we are "the people" and we must work to become involved with the decisions being made. We all seem somewhat computer literate, we found this site! So, write your elected officials and support any cause, business or person that has your values and best interests at heart. If all of us really did pull together to stand up for what we wanted/needed a great shout would be heard. Just one voice is where it starts AND PUTTING YOU MONEY BEHIND A GOOD CAUSE OR YOUR TIME WILL HELP. c oops- not shouting just hit caps by accident! :-)

hummingbyrd said:

Maggs! You sweetheart! I don't know how we change this, yet, but you just took one giant leap towards that goal. You asked HOW?
There is power in knowledge, and strength in numbers. The hardest part is to get the ball rolling, once we do that the 'snowball' effect takes over. BRAINSTORM ladies! They can't stop all of us.
First we decide what we want, then figure out how to get it. Organization is the key.
Personally, I want large clinical trial studies done with vitamins like A,B,C and E. We already know these vitamins have tumor destroying properties. Question is, what's the right dose?
A and E are fat soluble, so they can be toxic at high doses.
There's a lot more on my wish list, like less stringent criteria for stage 4 trials. Some of us have active disease and are still healthy. I wanted in on the Theratope vaccine, but nooo, I'd had chemo already. Well what difference does that make? Answer: won't be able to tell what worked the chemo or the vaccine. Well, duh huh, if the chemo had worked I wouldn't have progressed to stage 4. Sometimes I think these 'criteria' are put in place to selectively limit the studies. And what's with that infamous statement, "we made an exciting new discovery that could lead to a new anticancer therapy, but it will take 5-10 more years of research." Why?
CBSNEWS.com New Cancer Tumor Treatment March 2002
regarding Prime-1 (see cinders note on noni juice)
This is a molecule that repairs the defective p53 gene found in most cancers. Its been tested in mice and cell cultures, if the defect is there the tumor growth stops, entirely; with no side effects noted in the mice (weight loss...).
"We actually don't know how it (prime-1) works. We want to find similar substances that could work even better and try to understand the mechanism behind Prime-1," Wilman said.
Bringing a drug to market was still a long way off, he added. "Looking at drug development it would take around 10 years before its ready." Why?

"Of all forms of inequality, injustice in healthcare is the most shocking and most inhumane." Martin Luther King

Clodronate is a bisphosphonate drug used in other countries see www.lef.org article "Breast Cancer"
'...clodronate is not approved in the United States but the FDA did approve some expensive bisphosphonates that may not work as well as clodronate. One such drug is Aredia (sound familiar)...aredia costs about $2,000 a month and must be given via intravenous infusion. Clodronate is so safe cancer patients can start taking two 800-mg capsules a day as soon as they are diagnosed. The fact that clodronate is nontoxic, is not terribly expensive, and has been shown to improve survival would make it the drug of choice in a free market. Americans, however, are not free to make their own choices about medicines. The FDA does this for us.'
That is an exerpt taken from the Life Extension Foundation. For more information go to www.breastcancer.net or www.lef.org or what the heck, go to both sites.
Don't think this is a new finding either; a study in 1980 showed 30 patients with disorders of calcium metabolism were treated with clodronate, there was clinical improvement in all but 1.
What's the deal here 1980-2003, OK people this one's OVER the "10 year period". How many more drugs are there that should be available, but are not, because of greed?
How many people do we know that died of cancer that might have been cured if this drug had been made available?
How many more people will suffer because of kind of science?
Will we be part of the statistics? (I probably will be for sure. HA!)
I've said all along, "if cancer is my battle in life then I'm going to make it a good one".
Help me ladies, join me in the REAL fight against cancer.
God bless. hummb

Some time ago on this forum someone from Germany asked about clodronate. So I and a friend both looked it up - seems in Europe it is used often as a precaution ahead of bone mets - their thinking is that bone mets is the open door to the other organs. Of course, it is not always that route but i thought a try - but as you said not available here tho' we are testing! It's been around for years. Canada has as well as a melanoma vaccine.

HOWEVER when I was in for herceptin Monday - live across the border from Fort Erie,Canada there were THREE patients from Canada - doesn't say much for their universal coverage - it is a wait often for treatment.

Love to all,
Jean

hummingbyrd said:

Maggs, I factor in a couple of things before I get a flu shot.
I usually wait about a month after it's been released before I even consider taking the vaccine.
I check to see what strain they are vaccinating against, how many types of flu, etc.
Most importantly I ask God to guide me. I know it may sound ridiculous, but nothing is too insignificant for God.
luv and (((HUGS))) hummb

HUMMER!!!

You are singing my tune girlfriend!!

peace sister, emily