I suppose I should post something sensible now, so that if any newcomers stumble across my blog they won't immediately see that NKOTB video and think I'm completely insane/immature/lame/14 years old.
I can be sensible. Really.
I got a comment on one of my older posts from a woman recently diagnosed with smoldering MM. She wrote:
"Hello, I've been reading through your blog as I've just been diagnosed with Smoldering Myeloma. I have 2 kids under 5 and am v scared. I have been told I have a 1 in 3 chance of developing myeloma but not much more. I wondered if you had any guidance on good questions to ask...I'm very confused!It seems in the UK SMM isn't considered serious enough to get support. I can't find anything without reading all about Myeloma and I'm trying not to do that. But unless you have cancer there isn't much around.All I know so far is that I have raised protein, raised light chain readings and abnormalities in my bone marrow."
She didn't leave an e-mail address, so I'll try to answer her questions in a post.
First of all, hang in there! Smoldering myeloma can often be more stressful and scary than "real" myeloma, because there is nothing you can do. You just go to your tests every few months and hope that all of your numbers stay in a good place, but it's not like you're really "fighting" cancer. I always felt like I was trying really hard not to fight cancer back when I was smoldering, because I just didn't want to tick it off.
Back when I was first diagnosed, I wrote a long post about what all of my numbers meant and what the doctors were looking for. Reading that might be somewhat helpful. A quick summary: When I was smoldering, the doctors wanted be sure that I wasn't becoming anemic, that my kidneys and bones were OK, and that my white cells weren't too low. As long as that checked out OK, I was in the clear and didn't need to start Revlimid yet. I had checkups every two to three months to check all of that and to see what my M-spike (a measure of the myeloma) was doing. Some smoldering people have M-spikes that are totally stable and just sit there and do nothing; unfortunately, mine would go up just a teeny little bit every time. Stupid Spike.
Probably the most important thing (I think) is to base the decision to start treatment on trends that have been going on for a while (like a slowly rising M-spike), and not one single test. Good luck, and please, comment again any time and send me your e-mail if you want! Are there any other smolderers out there who have more advice?