All-

I am posting my email address again along with the original offer to participate in the cps itself as well as the design of the study.

My email address is daviddecemerson@mac.com- if you send me an email expressiing interest, I willl have the trial data and survey sent to you in the next few days. 

thanks

David

All-

There have been a fair number of posts recently on this list and the acor list regarding how to post, who can post, etc.

I assume that many/most of you subscribe to other posts beside this one.

As far as i can tell, all lists have the same basic rules.  No selling, be civil, members should be survivors or caregivers.  Where some get into trouble (me, Alex and Margaret) is the application of these rules.

The acor listserv is conventional in nature.  Both the list "owner" and many of the more outspoken members think conventionally.  Many of these members seem to be skeptical of anything not FDA approved.

Galen and b-m.org's mission is to provide a "full-spectrum" of information.  Don't sell, be civil towards each other and post all questions, comments, views, etc.

David

I just wanted to say that, yes, I have been put "on review" (without being told, by the way...until I asked outright) by the Acor list manager for having posted about Alex's essentially being forced to leave a few weeks ago. In fact, I myself was very close to leaving Acor. But I stayed on, thinking that it's important to have an alternative voice on occasion, even on a conventional listserv, as Acor clearly is. And in fact, there was a recent post about an issue I had already dealt with on Acor, i.e. that darned prostate cancer-multivitamin study that made blaring (stupid) headlines for no reason. When you go read the entire study (as I did, and I posted a step-by-step critique on my blog) you can tell the study is inconclusive, to say the least. Sloppy, in my opinion, since the researchers admit at one point that multivitamins may not be the culprits after all. Hello? Anyway, the point is: I am one of the more vocal "alternatives" on Acor, and I will stay there to debunk any misinformation about supplements etc., and for many other reasons, too. And I will abide by the rules (I agree with them anyway). Indeed, even with my Alex post, I hadn't broken any Acor rules, BUT I angered the list manager. Theoretically, based on the Acor rules, I shouldn't even be on review for that post. Whatever! A tiny fly in my soup, nothing more. ;-) Margaret, Florence, Italy

I got a wonderful email from Joseph Nga, a former member of the acor list who was always very supportive of my participation. I asked him to join us and post his email here. But here is some of what he had to say.

"I decided to unsubscribe from the MM list because some people were stirred by my somewhat positive, funny and often flamboyant attitude. They expected me to be orthodox or to behave like I belong to a bunch of condemned myeloma inmates on death row! I felt like I did not belong to this kind of myeloma mentality. Perhaps my own way of coping?

I simply shifted my attention to other useful sources of information and interests where I don't have to deal with close-minded, doomed, gloomy, sad and angry individuals. Of course, I very much miss people like you."

I agree with this very much. I do NOT think attititude has anything to do with the disease, but I have opted for less aggressive treatments, and they have always worked for me. I cannot vouch they would work for anyone else, of course. People take this too seriously, at any rate. In other cultures, even death is not such a big thing.
I will do my best to keep going with the least side effects. But letting myeloma giving me permanent gloom is not for me.

And Joe, as I have written to you, I was also one who encouraged you to try a pharmaceutical approach. However, Larry Morrison always used to post about his wife Sally, and how she has kept her myeloma at bay for a very long time with BLT-D, curcumin (only 300 mg per day bioperine),
and Vioxx, which now changed to Celebrex since Vioxx was banned. I do not even know if that post would even be allowed any more, but it is one that got my interesst.

It ia all so individual. I have been feeling pretty bad lately because of ever-increasing anemia. Despite my best efforts to avoid them, I know I will have to go back to drugs. But I am doing everything stepwise, which some peoole would be horrified as the myeloma may take control of my body too fast or something. This is my choice because it has worked for me before.

The strange this is Dimitris, the poster about artemisinin, had quite a few negative things he emailed me about my post about resveratrol. There is a substantical body of medical literaure about the anti-cancer effects of resveratrol. There is little or none with artemisinin actually. When I asked how it was he came to try artemisinin, as I see it, his logic was way off compared to mine with resveratrol. In fact, the artemisinin researchers have said it does not seem to work for mm patients.

But it seems the funding for this research will be cut off--perhaps no drug company finds it profitable enough. Novartis sells artemisinin with another compound as an antimalarial drug all over Asia and Africa. Since they now also have reduced sales of Zometa, you would think if anyone would want to fund this research, they would.

I do think that complementary approaches work best, and I Cannot tell you the number of emails I have had from people over the years from people who do all sorts of things. They have told me most people just would never tell their doctors. I think the doctors really do not have time to sort it all out.

Sometimes your pharmacist might have good information or be really helpful. And certain websites and people you find on the web can also be helpful.

Anyone who does this knows there is a risk, and some of it is clearly unknown. But Logical Man made a complete false statment on the acor list "the risks of approved mm drugs are known". If that is so, then why if you call one of these companies, are they required to gather and report any adverse side effects. They should already know them.
And, what, exactly are the long term risks of Velcade and Revlimid.
I would like Logical Man to inform me of those.

I really do not think any supplement made from food--curcumin, resveratrol, ellagic acid, and the like--is ever going to poison you if you buy it from a company you can trust.

Other things that are NOT made from food, we need to find more about.
Pau d'arco is a really good example, but that would be two pages.

Alex Maas
San Diego

Alex-

When you asked Joe Nga to "join us" did you mean the b-m.org or acor listserv?

"I asked him to join us and post his email here. But here is some of what he had to say. "I decided to unsubscribe from the MM list because some people were stirred by my somewhat positive, funny and often flamboyant attitude. They expected me to be orthodox or to behave like I belong to a bunch of condemned myeloma inmates on death row!"

I remember reading JN's posts and would consider him a welcome member of the b-m.org list.  Please invite him again.

David

DAvid,
Do you have any clue at all why antinaeoplaston therapy worked well for you yet has not worked so well for others? And do you know why you seemed to have a good experience at the clinic and others have had terrible ones?

This is not a post against the therapy at all. I just wondered if you had ever thought about why this worked well for you and was a positive experience? Obviously it DID work for you. The question is why.

Some would say it was a placebo effect or spontaneous remission. Yeah right. It could be that the specifics of your type of myeloma at that point in time made it work for you. If you had specifics this would be helpful (what characterized your mm at the point; genetic marks, etc.) Or did you do anything in conjunction with the therapy that is not necessarily part of it (All the other things you do now--were you doing them at the time?) Maybe other patients did or do not do the same things.

I highly suspect what is often left out in how well a given treatment for myeloma works might be something like diet or supplementation or detoxification or other things that are never reported.

Thanks.

Alex

I woke up from a nap today finding myself saying, "Heal, heal, heal" over and over. When I got up I found I was more refreshed than I had been in a while. It seemed to me that this positive command to my body to "heal" was indeed healing. This happened out of my conscious desire to "try" a method. I don't know if doing that in a conscious way would have the same effect.
Shirley

Derek Statham who is a member of the acor list, a PhD chemist, and leader of my local support group, told us tonight, as an inside joke directed at me, that a Dr. Greippe sp? at the Mayo Clinic in Rochester just told him 7 different patients had their mm numbers brought down from taking resveratrol. Really...I am not obsessed with the stuff or anything, but Derek was surprised and delighted to hear this, as he knows why I got suspended from the acor list. He asked me to go back to the acor list, but I do not think that will ever happen--too much time dealing with negative emails. Really it was not about the resveratrol or the rules against commercial posting that I clearly violated. It is the negative emails I cannot deal with. I just need a bigger delete key or something.
Alex Maas
a.maas@cox.net
Please feel free to email me anytime.