Why do they wait?

You want to pay for testing alternative treatments?  I suspect not.  And if it isn't something that you can patent, most pharmaceuticals don't want to either.  It is EXTREMELY expensive to get drugs through clinical trials – I don't think you realize the kind of numbers and resources that are involved.  The FDA doesn't conduct these type of trials, companies who want their product approved foot the cost.  And if you don't have resources, you don't get approval.

Jewel, I suspect that Janner has some feeling for the way NED people of all stages feel about the possibility of Tumors returning.  Why do you think she is still looking at herself and is here helping so many.  I'm sure she also has a nagging in her mind that things may happen any time.  Hopefully less intense than we at Stage IV have about the immediacy if a return is experienced. 

    I look at things that may be considered off the main line of heavy research that money cannot be made from. (Alternatives that are not FDA tested/approved)   Many cancer centers such as MDA, UVA and others do look (within funding constraints) at things like Curcumin, broccoli, aspirin (COX-2 inhibitors), anti-oxidant supplements, the interaction of different vitamins with different treatments, etc.  Some of these items apply to NED people and is some cases mores so than to Non-NED but stable cancer patients on different treatments.  i wish we could get more funding for such locations to do deeper studies. 

PS, I have had my Oncologist 'suggest' that I look at Dr Andrew Weil's writings.

PS, I have had my Oncologist 'suggest' that I look at Dr Andrew Weil's writings.

PS, I have had my Oncologist 'suggest' that I look at Dr Andrew Weil's writings.

Jewel, I suspect that Janner has some feeling for the way NED people of all stages feel about the possibility of Tumors returning.  Why do you think she is still looking at herself and is here helping so many.  I'm sure she also has a nagging in her mind that things may happen any time.  Hopefully less intense than we at Stage IV have about the immediacy if a return is experienced. 

    I look at things that may be considered off the main line of heavy research that money cannot be made from. (Alternatives that are not FDA tested/approved)   Many cancer centers such as MDA, UVA and others do look (within funding constraints) at things like Curcumin, broccoli, aspirin (COX-2 inhibitors), anti-oxidant supplements, the interaction of different vitamins with different treatments, etc.  Some of these items apply to NED people and is some cases mores so than to Non-NED but stable cancer patients on different treatments.  i wish we could get more funding for such locations to do deeper studies. 

Jewel, I suspect that Janner has some feeling for the way NED people of all stages feel about the possibility of Tumors returning.  Why do you think she is still looking at herself and is here helping so many.  I'm sure she also has a nagging in her mind that things may happen any time.  Hopefully less intense than we at Stage IV have about the immediacy if a return is experienced. 

    I look at things that may be considered off the main line of heavy research that money cannot be made from. (Alternatives that are not FDA tested/approved)   Many cancer centers such as MDA, UVA and others do look (within funding constraints) at things like Curcumin, broccoli, aspirin (COX-2 inhibitors), anti-oxidant supplements, the interaction of different vitamins with different treatments, etc.  Some of these items apply to NED people and is some cases mores so than to Non-NED but stable cancer patients on different treatments.  i wish we could get more funding for such locations to do deeper studies. 

Jewel, that reply wasn't for you.  It was for Linny wondering why the medical establishment doesn't promote alternative treatments – or why the FDA doesn't do trials on alternative medicines.  There is a big reality involved there and most people just don't get it.  I used to work for a medical device manufacturer and have been on the side of a company conducting a clinical trial, analyzing data and paying all the money to get a treatment approved.  I understand it from the patient angle, and from the corporate angle.  The money involved is staggering.

The medical establishment will never promote alternatives that don't have hard science behind them.  And most alternative medicines have no possibility of profit margin.  Natural remedies often aren't patentable.  So unless some corporation finds a natural alternative that has some possibility of profit, there isn't going to be FDA approval for alternatives.  I may not like it, but I get it.

That's all the point I was trying to make.  Sorry if I came off cold or ruffled your feathers.  I've answered thousands of replies over the last 10+ years and some don't come off as I intend.  It's the nature of a bulletin board.

BTW, my father is stage III melanoma (not NED), stage IV prostate cancer, stage 1 lung cancer and also has a massive thyroid cancer tumor.  My mother is stage 0 melanoma.  I get cancer from many angles.

Janner

Jewel, that reply wasn't for you.  It was for Linny wondering why the medical establishment doesn't promote alternative treatments – or why the FDA doesn't do trials on alternative medicines.  There is a big reality involved there and most people just don't get it.  I used to work for a medical device manufacturer and have been on the side of a company conducting a clinical trial, analyzing data and paying all the money to get a treatment approved.  I understand it from the patient angle, and from the corporate angle.  The money involved is staggering.

The medical establishment will never promote alternatives that don't have hard science behind them.  And most alternative medicines have no possibility of profit margin.  Natural remedies often aren't patentable.  So unless some corporation finds a natural alternative that has some possibility of profit, there isn't going to be FDA approval for alternatives.  I may not like it, but I get it.

That's all the point I was trying to make.  Sorry if I came off cold or ruffled your feathers.  I've answered thousands of replies over the last 10+ years and some don't come off as I intend.  It's the nature of a bulletin board.

BTW, my father is stage III melanoma (not NED), stage IV prostate cancer, stage 1 lung cancer and also has a massive thyroid cancer tumor.  My mother is stage 0 melanoma.  I get cancer from many angles.

Janner

I've never worked for a company that does clinical trials, so please share with me and others what type of cost that entails. What exactly is "staggering"?

Yes, you did come off a bit brusque, but that sometimes happens with online discussions. 🙂 Too bad we can't have a discussion like this over come coffee.

Linny, I haave to run now, but go back to the finding of BRAF (B-RAF) oncoproteins and DNA mutations in melanoma tumors.  Look at the years of research and the many years of trials and the number of places that were involved in trials, the various trials that were examined, the FDA requirements.   THis type efforts costs many millions and even approaches billions of dollars in some cases. 

The other recently approved treatment of Ipi (anti-CTLA-4) was even worse to get approved.  (Many of us do really wonder about what the company was doing much of the time!)  It should have been approved years before it was.

Remember the MOTTO, "DO NO HARM"     to a dying person.

Thanks for your reply Jerry. A price tag in the millions would not be unexpected. But billions is staggering, indeed.

Your statement that Ipi should have been approved years before it was, is scary. Maybe there were budgetary problems? But I'm glad they finally got around to it. It's been a blessing for many.

I was only diagnosed in December 2010 so I still have a lot to learn.

Ipi still only has long term "cure rates of even  less than IL-2 (the last stage IV treatment approved before Ipi).  IL-2 was approved in the late 1990's.  IL-2  had been being used and worked on by my Oncologist since the early 1980's!  Ipi, while a good step against across the board melanoma, still has no higher stand-alone success rate than IL-2.  It does work on some cases that IL-2 doesn't.  IL-2 works on some patients where Ipi doesn't.  Both of them seem to help boast the immune system so that the other might be successful.  Both of them quite likely boast the immune system so that the seldom effective chemo treatments stand a better chance of working in individuals.  Much is being learned thru the human gnome studies so that the medical scientists are leaning more about why what works on some, works on them.  In the lab in Petri dishes there have ben hundredths of drugs that kill melanoma cells.  When the same chemo has been turned into a drug and administered to patients few of them have shown even a 1% success rate.  Many of them have worked on a few individuals.  Why what worked on the ones it did?  Science has yet to provide the answer.  If one could keep enough health to try everything, many more lives would be extended.  However before the gnome project and targeted drugs, it was just trial and failure before each drug, whose purpose was to kill fast reproducing cells, could be tried on each individual and them then recover enough to try the next drug.  This is still a problem even with the targeted BRAF drugs because melanoma often finds a way around even the single targeted signaling pathway and rears its ugly head again.  Many baby steps, maybe one day a giant leap?  (Maybe something like aspirin or doxycycline are a modified version of these cheap readily available drugs?)  Look up what is being done in these areas.  If you had a company and found a cheap readily available treatment, how many hundreds of milions of dollars would your stockholders approve for an expenditure that might take hundred of years to recoup on the profit margin that aspirin would provide?  (Could I offer you an aspirin while you try to figure that out?) 

Ipi still only has long term "cure rates of even  less than IL-2 (the last stage IV treatment approved before Ipi).  IL-2 was approved in the late 1990's.  IL-2  had been being used and worked on by my Oncologist since the early 1980's!  Ipi, while a good step against across the board melanoma, still has no higher stand-alone success rate than IL-2.  It does work on some cases that IL-2 doesn't.  IL-2 works on some patients where Ipi doesn't.  Both of them seem to help boast the immune system so that the other might be successful.  Both of them quite likely boast the immune system so that the seldom effective chemo treatments stand a better chance of working in individuals.  Much is being learned thru the human gnome studies so that the medical scientists are leaning more about why what works on some, works on them.  In the lab in Petri dishes there have ben hundredths of drugs that kill melanoma cells.  When the same chemo has been turned into a drug and administered to patients few of them have shown even a 1% success rate.  Many of them have worked on a few individuals.  Why what worked on the ones it did?  Science has yet to provide the answer.  If one could keep enough health to try everything, many more lives would be extended.  However before the gnome project and targeted drugs, it was just trial and failure before each drug, whose purpose was to kill fast reproducing cells, could be tried on each individual and them then recover enough to try the next drug.  This is still a problem even with the targeted BRAF drugs because melanoma often finds a way around even the single targeted signaling pathway and rears its ugly head again.  Many baby steps, maybe one day a giant leap?  (Maybe something like aspirin or doxycycline are a modified version of these cheap readily available drugs?)  Look up what is being done in these areas.  If you had a company and found a cheap readily available treatment, how many hundreds of milions of dollars would your stockholders approve for an expenditure that might take hundred of years to recoup on the profit margin that aspirin would provide?  (Could I offer you an aspirin while you try to figure that out?) 

Ipi still only has long term "cure rates of even  less than IL-2 (the last stage IV treatment approved before Ipi).  IL-2 was approved in the late 1990's.  IL-2  had been being used and worked on by my Oncologist since the early 1980's!  Ipi, while a good step against across the board melanoma, still has no higher stand-alone success rate than IL-2.  It does work on some cases that IL-2 doesn't.  IL-2 works on some patients where Ipi doesn't.  Both of them seem to help boast the immune system so that the other might be successful.  Both of them quite likely boast the immune system so that the seldom effective chemo treatments stand a better chance of working in individuals.  Much is being learned thru the human gnome studies so that the medical scientists are leaning more about why what works on some, works on them.  In the lab in Petri dishes there have ben hundredths of drugs that kill melanoma cells.  When the same chemo has been turned into a drug and administered to patients few of them have shown even a 1% success rate.  Many of them have worked on a few individuals.  Why what worked on the ones it did?  Science has yet to provide the answer.  If one could keep enough health to try everything, many more lives would be extended.  However before the gnome project and targeted drugs, it was just trial and failure before each drug, whose purpose was to kill fast reproducing cells, could be tried on each individual and them then recover enough to try the next drug.  This is still a problem even with the targeted BRAF drugs because melanoma often finds a way around even the single targeted signaling pathway and rears its ugly head again.  Many baby steps, maybe one day a giant leap?  (Maybe something like aspirin or doxycycline are a modified version of these cheap readily available drugs?)  Look up what is being done in these areas.  If you had a company and found a cheap readily available treatment, how many hundreds of milions of dollars would your stockholders approve for an expenditure that might take hundred of years to recoup on the profit margin that aspirin would provide?  (Could I offer you an aspirin while you try to figure that out?) 

Thanks for your reply Jerry. A price tag in the millions would not be unexpected. But billions is staggering, indeed.

Your statement that Ipi should have been approved years before it was, is scary. Maybe there were budgetary problems? But I'm glad they finally got around to it. It's been a blessing for many.

I was only diagnosed in December 2010 so I still have a lot to learn.

Thanks for your reply Jerry. A price tag in the millions would not be unexpected. But billions is staggering, indeed.

Your statement that Ipi should have been approved years before it was, is scary. Maybe there were budgetary problems? But I'm glad they finally got around to it. It's been a blessing for many.

I was only diagnosed in December 2010 so I still have a lot to learn.

Linny, I haave to run now, but go back to the finding of BRAF (B-RAF) oncoproteins and DNA mutations in melanoma tumors.  Look at the years of research and the many years of trials and the number of places that were involved in trials, the various trials that were examined, the FDA requirements.   THis type efforts costs many millions and even approaches billions of dollars in some cases. 

The other recently approved treatment of Ipi (anti-CTLA-4) was even worse to get approved.  (Many of us do really wonder about what the company was doing much of the time!)  It should have been approved years before it was.

Remember the MOTTO, "DO NO HARM"     to a dying person.

Linny, I haave to run now, but go back to the finding of BRAF (B-RAF) oncoproteins and DNA mutations in melanoma tumors.  Look at the years of research and the many years of trials and the number of places that were involved in trials, the various trials that were examined, the FDA requirements.   THis type efforts costs many millions and even approaches billions of dollars in some cases. 

The other recently approved treatment of Ipi (anti-CTLA-4) was even worse to get approved.  (Many of us do really wonder about what the company was doing much of the time!)  It should have been approved years before it was.

Remember the MOTTO, "DO NO HARM"     to a dying person.

I've never worked for a company that does clinical trials, so please share with me and others what type of cost that entails. What exactly is "staggering"?

Yes, you did come off a bit brusque, but that sometimes happens with online discussions. 🙂 Too bad we can't have a discussion like this over come coffee.

I've never worked for a company that does clinical trials, so please share with me and others what type of cost that entails. What exactly is "staggering"?

Yes, you did come off a bit brusque, but that sometimes happens with online discussions. 🙂 Too bad we can't have a discussion like this over come coffee.

Jewel, that reply wasn't for you.  It was for Linny wondering why the medical establishment doesn't promote alternative treatments – or why the FDA doesn't do trials on alternative medicines.  There is a big reality involved there and most people just don't get it.  I used to work for a medical device manufacturer and have been on the side of a company conducting a clinical trial, analyzing data and paying all the money to get a treatment approved.  I understand it from the patient angle, and from the corporate angle.  The money involved is staggering.

The medical establishment will never promote alternatives that don't have hard science behind them.  And most alternative medicines have no possibility of profit margin.  Natural remedies often aren't patentable.  So unless some corporation finds a natural alternative that has some possibility of profit, there isn't going to be FDA approval for alternatives.  I may not like it, but I get it.

That's all the point I was trying to make.  Sorry if I came off cold or ruffled your feathers.  I've answered thousands of replies over the last 10+ years and some don't come off as I intend.  It's the nature of a bulletin board.

BTW, my father is stage III melanoma (not NED), stage IV prostate cancer, stage 1 lung cancer and also has a massive thyroid cancer tumor.  My mother is stage 0 melanoma.  I get cancer from many angles.

Janner

You want to pay for testing alternative treatments?  I suspect not.  And if it isn't something that you can patent, most pharmaceuticals don't want to either.  It is EXTREMELY expensive to get drugs through clinical trials – I don't think you realize the kind of numbers and resources that are involved.  The FDA doesn't conduct these type of trials, companies who want their product approved foot the cost.  And if you don't have resources, you don't get approval.

You want to pay for testing alternative treatments?  I suspect not.  And if it isn't something that you can patent, most pharmaceuticals don't want to either.  It is EXTREMELY expensive to get drugs through clinical trials – I don't think you realize the kind of numbers and resources that are involved.  The FDA doesn't conduct these type of trials, companies who want their product approved foot the cost.  And if you don't have resources, you don't get approval.