Anyone have experience with S-1

[LLVV]

I read an interesting journal article about a chemo drug called S-1. It's a combination of tegafur/gimeracil/oteracil potassium and it had remarkable results when used with Irinotecan (Campostar). This article was from a Japanese study of a patient who had bone metastasis that resolved to the point where his colon tumor could be removed and thus his stage was downgraded.

Is this treatment offered in the US? Has anyone taken it and had success? This is the first time I've seen this drug mentioned so it doesn't sound like a standard treatment. I was thinking of sending the article to my dad but I don't want to give him false hope if this particular case was an oddity rather than something that is actually possible in the general popular.

[Happy1foru]

I don't personally have any experience with S-1 but if you check out the ARE THERE ANY INDIVIDUALS IN HERE ON PERMANENT CHEMO thread, the last poster there stated that it is not FDA approved. Perhaps if you email them they may have more info? Good luck to you and your dad.

[LLVV]

I guess that is why I haven't found a lot of information on it other than the journal article I found. If a treatment is not FDA approved then am I right in assuming insurance wont cover it?

Thank you for pointing me to the ongoing thread. I'm going to take a look at it now.

[Surroundedbylove]

If it isn't FDA approved I think not only would insurance not cover it but you wouldn't be able to get that treatment in the US unless you were in a US clinical trial of it.

[NMS]

If it isn't FDA approved I think not only would insurance not cover it but you wouldn't be able to get that treatment in the US unless you were in a US clinical trial of it.

I believe you can have licensed medicines from other countries mailed from overseas for compassionate uses. Last year I ordered, and got, a medicine unavailable in the US, from Canada by mail, with love notes and my phone number to Customs.

[Terry]

If you can have it shipped from other countries I'd be real leery about the quality since it's not FDA approved. I know my onc. wouldn't administered anything that hasn't come through here.

From my understand it's (the Tegafur) is in a trial.

nms are you promoting sales because your part of the company lef.org?

[waw4]

I don't think NMS works for LEF - it's just a site with a lot of information for people considering supplements for either adjunct purposes or to relieve side effects.

I do think NMS is thinking outside the "FDA approved" box, having looked at Asian published clinical research and current treatment methods which do appear to have some impressive results.

I for one appreciate his bringing the LEF site and the asian studies to my attention; and my onc hasn't minded my bringing these subjects, such as the CA19-9 test and possible use of Cimetidine. In fact, I'll get my CA19-9 test result this Tuesday from my blood test this week.

[Terry]

CA 19 has been around for many years. I had that test in about 1998 because my aunt had ovarian cancer and I wanted to see what mine was (it was fine back then). Tagament has been around for a long time also and there are trials for it in the US to see if it's effective. That I'm going on and wanted to for quite a while but keep forgetting to buy it.

My concern is with people that think that these drugs nms is on being a "miracle cure". First nms or nms spouse (can't remember which) has not been on them long enough to know if they're going to save his/her life or end his/her life. My aunt used some of these things and died.

Also, if you look deeper into the leg.org site, it's ran by a chiropractor. I have nothing against chiropractors, they have their place, but their not oncologist.

All I have to say is if anyone decides not to do standard chemo and goes this route, your taking your life into your hands. It's an individuals choice. Personally I'm not going to play russian roulette with mine on drugs that aren't given to me by a licensed physician, come from another country and are not being used in this country yet. Tegafur is currently in a trial and that's great. I want to see what the outcome is. Now if it was the only thing I had left to try, I probably would at that point.

Just tread with caution. JMO

[jmarie]

My concern is with people that think that these drugs nms is on being a "miracle cure".

I would hope that anyone here would do some serious research before starting any drug, including conventional chemotherapy. I am in the process of looking into alternative therapies because I keep progressing on the traditional txs. I think we need to be careful not to push away those trying other options. Although they may not be for everyone and need to be used with caution, at some point they might be our only option. As I was having my allergic reaction to Oxi on Monday, struggling to breath and fearing that I would never see my baby again, I wonder if I am crazy for poisening myself in order to stay alive? Don't get me wrong, I do believe Chemo saved my life. The doctors originally didn't think I would live more than a few months and I am still here 22 months later. Unfortunately it is now toxic and Folfiri doesn't work for me. So now in order to fight this disease I need to start looking elsewhere for solutions. So I am very thankful to those trying other options and their feedback. From what I have seen lately and my own experience with a clinical trial, the FDA has issues. Just because it is not approved by the FDA doesn't mean much to me. I'm a little annoyed with the FDA, sorry.

[jscho]

In all fairness, one of the principal drugs NMS has used, S-1 or TS-1, is basically 5FU modified to make it easier to deal with (less GI distress) with some additional ingredients to try to limit its elimination. Nothing controversial in that. There is nothing too radical in the "metronomic" scheduling of this drug either. I applaud NMS for making informed choices.

To each his own,
Jeremy

[Terry]

AS I said in my last post, if I had tried all other options I to would try alternative therapies. The problem I have is someone discrediting conventional chemotherapy, it has prolonged patients lives and even cured some. I also have a problem with advising someone to take their child off of a treatment that could cause detrimental harm to the child. Other than that I don't care (well I do care but you know what I mean) what someone chooses to do, everyone has a right to choose.

Jessica, if I were in your shoes I would be thinking about other possibilites too. Just remember if this was all that great we'd be using it here. It may prove to be a really good thing and I hope so, we need more options. If oxi doesn't work for me this time, I'm out of options except trials. I want to see how nms (or spouse, unsure) is doing a year and two years out. I really really hope he/she is doing great!

[eve]

Jessica, has any one suggested a test like the "target now" procedure I posted about to try and see if there are any other conventional drugs that could work in your specific case?
I understand there could be an insurance problem with drugs standardly used for different conditions but still I'm wondering if that suggestion was made.
You're having such a hard time with Folfox, I wish they could find something effective and easier for you to tolerate.
I just can't believe there would'nt be a way to finance it for you if that were the problem.

I've been following your posts since I joined a few months ago, you really are such a beautiful person.

wishing you the very best,
Eve

[joeyooser]

AS I said in my last post, if I had tried all other options I to would try alternative therapies. The problem I have is someone discrediting conventional chemotherapy, it has prolonged patients lives and even cured some.

Well that's true. But I think chemo also weakens and shortens a number of lives, too, while costing a fortune.

The reason particular drugs are FDA-approved is because they were novel, patentable, and there was enough money to get them through the expensive trial process. This leaves a lot of potential treatments on the sidelines, where the financial reward just wouldn't add up. I have no doubt that there are a number of off-patent drugs that would be just as effective as oxaliplatin (which, according to another thread, only added like 6% to survival), at a fraction of the cost, and less toxicity. However, the trials will never be performed because they aren't patentable and the cost of the trials could never be recovered.

It's a shame there isn't some way to vet some of the internet folklore to figure out what is real and what isn't, without randomly experimenting on yourself.

[jmarie]

Thank you Tim, you said exactly what I was thinking about the FDA, just too tired to put it into words.

Report this postReply with quote Re: Common Diabetes Drug May Fight Cancer
by SkiFletch » Thu Sep 02, 2010 10:11 am

She notes that it's been tough getting funding for her studies because metformin is "an orphan drug," a generic drug not backed by any pharmaceutical company. And with no patent, there is no financial incentive for drug companies to fund research.

That drives me insane. Here we have something that might save lives and because there's no money in it, 5 years of struggle were required to secure funding to research it. grumble Hope this research bears soome fruit.

This thread is an example of a possible treatment that no one wanted to fund because there is no money in it. I am sure there are many possible txs that there is no funding for. I honestly think that in a few decades they will find that the cure to cancer was right under our nose but there was no money in it so it wasn't studied earlier.

Jessica, has any one suggested a test like the "target now" procedure I posted about to try and see if there are any other conventional drugs that could work in your specific case?
I understand there could be an insurance problem with drugs standardly used for different conditions but still I'm wondering if that suggestion was made.
Eve

Thank you very much Eve.
I am not familiar with the "target now" procedure, is that post on this thread?

[eve]

hey jessica, I posted about it a few days ago. It's a procedure where a sample of a patient's tumor is sent to lab for molecular testing to try and pinpoint drugs that could work specifically for him/her based on individual biological characteristics. Turns out sometimes conventional drugs known to treat different conditions, or drugs that do not work well enough on everybody, could have a good chance of working in specific cases. We heard about it from one of the leading oncs in my country (I'm not from the US) when we went for a 2nd opinion on my dad. Attaching a link if you want to read more about it.

http://www.carislifesciences.com/oncology-target-now