Today I’m publishing three blog reader queries that were posted on my blog’s Facebook page. Ah, for those who don’t know: yes, my blog is on Facebook (when you’re on Facebook, simply look up Margaret’s Corner, smoldering myeloma…I have a link here on the blog, too…look on the right).
Anyway, I thought perhaps some of you could help out. Here are the salient points (I did some editing/summarizing):
1) Hi Margaret, I have had MGUS since 2008. I didn’t really take much notice of this diagnosis only having to attend yearly appointments until recently. Unfortunately my paraproteins have increased rapidly and I’ve been upgraded to smouldering! I am only 49 and finding it hard to get my head around it all. I am being considered for a trial of Siltuximab (anti – IL 6 monoclonal antibody); have you or any of your followers got any views about being part of a trial? I would be most grateful for your thoughts.
Has anybody here participated in a monoclonal antibody trial?
2) The second blog reader wanted to “meet” someone who might have some experience with kidney cancer and curcumin. His 40-year-old cousin had one of his kidneys removed five years ago. Unfortunately, the cancer seems to have returned now. This blog reader would therefore like to find out if curcumin might help in this situation. I don’t know much, if anything, about kidney cancer, and that is why I am turning to you guys…Can you help?
3) This blog reader became scared and depressed after reading about myeloma online…all the statistics and so on. I think many of us have BEEN THERE, so we can relate, unfortunately. She wrote that she tries to be optimistic, but at times it’s hard (that part comes after the “it was a big relief for us”). Here are a few excerpts from two of her messages:
My mom was diagnosed with SMM a couple of months ago. […] It was the most difficult moment in my life. We were left then with only two options: it’s either SMM or myeloma. So when we finally got the diagnosis of SMM, it was a big relief for us. […]
I just want someone to hug me and say that everything is going to be ok….
In a second message, she asks a question (which I have already answered, but it would be great for others to help, if possible):
Dear myeloma experts, I need your knowledge! We just got the first set of lab results since the diagnosis. The m-spike hasn’t changed, but the total IgG is up. Is it good or bad? It seems to me that if the m-spike hasn’t changed and the total IgG is up, then the “good” IgGs are up… Am I right? Thanks!
Thanks (in advance) for any and all comments!!! 🙂