Well, I don't understand how I can come across the two very differnet articles that I have posted today but I guess that we all need to read each and decide for ourselves. David
"Fatigue, cognitive deficit, sleep disturbance and neuropathic pain are just some of the side effects with which survivors must deal. Yet, historically, there has been little research to understand the biologic mechanisms that cause them, the patients who are most susceptible to developing them or what kind of interventions might alleviate them.
“The problem is that many areas of importance to patients, especially side effects, have not been funded by the National Cancer Institute or the National Institutes of Health,†says Charles Cleeland, Ph.D., chair of the Department of Symptom Research at M. D. Anderson."
Is Beating-Myeloma still keeping track of curcumin experiences?  I have a question that I hope may have an answer.  I have been responding to Velcade/dex (weekly with 10mg of dex).  My IgA counts went down from about 3000 to 1000 after three courses.  I then took a vacation of five weeks during which time I took 1 and 1/2 grams of curcumin (AFI) daily.  After the five weeks, the IgA count went up from the 1000 to 1600--not bad. I will now be finishing the fourth course.  I've been taking one gram of curcumin daily while on the Velcade.  I am hoping to see numbers below 1000 when I get the results of next week's draw.  My prayer is that curcumin might keep me stable for a long while, but I have no idea what dose to take once I stop the Velcade.  Am I just in a guessing game? Have there been any similar experiments from which I might draw some informed plan?  Thanks, all,  for any input.  I'll be glad to share my own results as they come in if you think it may be helpful.
ShirleySFL in NYC
David, I agree with you on the importance to us patients of the side effects you mention. How can we get the research institutes more interested?
ShirleySFL
Shirley-
Yes, the CPS is open and is up to 22 patient submissions. I just read over a number of histories and I can't answer your questions specifically.
1) I have read studies and accounts relating that curcumin has synergistic effects with velcade. I think Terry knows more but I believe that your curcumin supplementation might make the velcade therapy more effective.
2) based on the cps submissions, daily doses are generally from 3-8 mgs a day- but as I mention above, the fact that you are also taking velcade is an important factor.
3) many report that curcumin supplementation helps maintain stability-
David
"I have a question that I hope may have an answer. I have been responding to Velcade/dex (weekly with 10mg of dex). My IgA counts went down from about 3000 to 1000 after three courses. I then took a vacation of five weeks during which time I took 1 and 1/2 grams of curcumin (AFI) daily. After the five weeks, the IgA count went up from the 1000 to 1600--not bad. I will now be finishing the fourth course. I've been taking one gram of curcumin daily while on the Velcade. I am hoping to see numbers below 1000 when I get the results of next week's draw. My prayer is that curcumin might keep me stable for a long while, but I have no idea what dose to take once I stop the Velcade. Am I just in a guessing game? Have there been any similar experiments from which I might draw some informed plan?"
Shirley-
"David, I agree with you on the importance to us patients of the side effects you mention.  How can we get the research institutes more interested?"
My sister just sent me an article about Kathy Giusti (the MMRF) from the New Yorker. Kathy and the MMRF has raised 92 mm for myeloma research. Unfortuneately, all the research is on therapies and not side effects.
The only way to raise awareness of issues other than conventional therapies that I can think of is to circulate some sort of survey. I have mentioned this idea before but have never gotten any response.
Beating-myeloma.org could program/design some sort of electronic petition to email around, a document with an issue or issues to comment on and foreward. If there are a number of survivors/caregivers out there who comment I could then bring the issue to the attention of an organization like the MMRF or IMF.
This might initiate some sort of research. Just a thought. DavidÂ
Shirley,
I recall reading that you've experienced jaw pain after having taken Aredia or Zometa. I've noticed some jaw pain, too, but my dentist says that everything is OK. Can you tell me what your experience has been?
 Many Thanks.
 Cathy
healthi22@yahoo.com
Cathy, I advise that if the pain continues that you get a second opinion.  Try to get a head and neck surgeon who has had many cases or a dentist that has specialised in some way in ONJ cases. Where do you live?  BTW, I tried EMailing you privately at the health22 address but my post was returned with the note that that address was no longer valid.
Shirley
Shirley,
 My email address is strange. It's the word health with an i after the last h. healthi22@yahoo.com. Feel free to try it again anytime.
I live in Colorado. I'll see if I can find a head and neck surgeon with experience in ONJ. I don't seem to have ONJ. I just had sensitivity for about 2 weeks after an infusion in March. I usually have a three-hour infusion, but the new nurse shortened the time to 1.5 hours. I caught the mistake - late - and extended the time, but the infusion ended up lasting only two hours. According to the IMF, two hours is adequate for Aredia. But, I have to wonder if two hours is too short for me. I am concerned about having future infusions, needless to say, until I've researched this problem further.. The IMF also says to stop infusions in one has ONJ.Â
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