David,

Thanks for posting this information. It's both interesting and informative. I hadn't read one of the Gonzalez articles before, so I'm glad to have read it now. It is amazing to see how long some of Gonzalez's pancreatic cancer patients have lived.  Hooray for enzymes!

As for your offer to do research, that's very generous of you. I don't have anything specific right now, but I'm sure I will soon. I suspect other list members short on time will take you up on your offer. It's too good to pass up.

Cathy and all-

I don't want members to think that I'm just being generous suggesting research. First of all, there is a researcher that Galen contracts with on an hourly basis. Second of all, I hope to build up a store of papers on topics that may be of interest to other survivors and caregivers.

"As for your offer to do research, that's very generous of you. I don't have anything specific right now, but I'm sure I will soon. I suspect other list members short on time will take you up on your offer. It's too good to pass up."

Those of us who have been reading the listservs for a while see many of the same questions asked repeatedly (not all but many). Therefore I am thinking that if the 125 or so members reading this list put their minds to it, they can think of basic questions that may help them manage their mm.

- boosting one's immune system will be the first paper to be researched.

-the state of low dose thal/dex/vel/rev perhaps-low dose anything

-a paper on the current state of kyphoplasty? issues, side effects,post operative activites to get better?

-gene testing and mm is being worked on (Erin tells me that she is not finding much on this issue other than the first article that we all read)

-chemo-protective supplements of any kind- antioxidants, curcumin, any others?

- a paper on possible causes of mm? this is a big and controversial topic- some say don't spend time thinking about it, and many still wonder-

-some kind of paper weighing the pros and cons of stem cell transplantation vs. managing one's mm- aggressive treatment (sct) vs. less agressive (thal, dex, vel, rev)

-types of integrative therapies? What does anyone mean by integrative therapy for mm? Is velcade and curcumin integrative mm therapy?

Are there any studies out there on any of these topics?

Any other subjects come to mind? David

I just came across this clinical trial at clinicatrials.gov- it is integrative mm therapy- is anyone interested in intravenous vit. c therapy and it's possible effectiveness on mm?

Arsenic Trioxide and Ascorbic Acid Combined With Bortezomib, Thalidomide, and Dexamethasone in Treating Patients With Relapsed or Refractory Multiple Myeloma or Plasma Cell Leukemia
Condition: Multiple Myeloma and Plasma Cell Neoplasm

don't miss the link inside the last article link. It was a helpful presentation by a doctor of more of the patient's viewpoint. She gives good advice for the patient to make the most of the appt. and makes the presentation with humor. Its a little long, 10 minutes, (give or take a few minutes) and slows down some at first, but picks back up.

Here is that link

http://www.oncolink.org/tv/flash/melanoma/closing.cfm

Linda B

Linda- I watched the first few minutes of the video (before it stopped for some reason) funny- raised some important points.

I went to a fundraiser for a new nonprofit focused on cervical cancer.  Everyone was given a "newly dx info packet" in the form of an actual plastic expandable mini brief case with info inside it.

I got to thinking that beatiing-myeloma.org should also offer a folder of this kind- with info inside of it.  Send it for free-

Any comments on what should be included?  "if I knew then what I know now...."  David

insdie the doctor/patient article