Greetings Teri / #Allstaedt57,

Thank you so much for sharing all your wonderful insights. I'm sorry I'm so long in responding to everything you shared. It sounds like participating in the WFPBD/Curcumin study is working out very well for you. It's interesting that you've confirmed my fear -- based on talking with Dr. Shah and her assistant Ms. Castro and my insurance companies -- that my insurance wouldn't pay for some of the "gray" area tests/procedures in the consent form they sent me. I agree that it's a very interesting study, and I hope that some new treatment options evolve out it eventually. I finally decided not to participate because of the expense. Also, traveling always disrupts my normal digestion so I would need to stay several days in NYC in order to provide required "materials." I do take the same Curcumin C3 Complex by Sabinsa Corp that they recommend and try to eat mainly a plant based diet. That's the rub though, it's very hard to adhere to a WFPBD diet without support.

I haven't had a PET scan, maybe I'll request one when I see my hematologist in September. But a few months ago, I had a BMB that showed I had progressed to SMM. I consulted with Dr. Gertz at Mayo Clinic, and their pathology department reread my BMB slides, concluding that my plasma count was less than 5%. Whew! They use a different, more accurate methodology for counting the plasma cells. While Dr. Gertz is brilliant, I didn't get any advice on how to forestall disease progression. So, I may still consult with Dr. Shah or Dr. Richardson or others at MSK or DF. Having hope is so essential!

I must say you are truly amazing in the energy, drive, and optimism you show. I pray you do well and prosper. Thanks so much for writing.

Best wishes,
Deborah