Monday, July 27, 2009

Sensible.

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?

2 comments:

Anonymous said...

To the SMM reader- I was diagnosed in November with SMM and the initial phase is really scary because you don't have any idea which direction things will go. You may have an increase in the protein (like Karen), a decrease (like me), or stay the same. It is good that you were diagnosed at this stage because the treatments now are working well and new drugs are on the horizon. Look at how well Karen did with the Revlimid! It is difficult to "just sit around waiting for something to happen". I started taking Curcumin when I was diagnosed and my levels are going down. It is inexpensive, you can buy it online, and it is working for me. Another advantage (for me) is that I have a "seize the day" mentality now. Once you get through the initial few months, it will get better. I also recommend reading Karen's description of the numbers because she has a good way of making sense of a complicated disease. Best to you... and I love your blog Karen- it is really funny.

Margaret said...

I was diagnosed with MGUS in 1999 (same year I got married...), then SMM in 2005, based on a BMB report: 50% evil cells. In 2005, I consulted a bunch of well-known MM specialists who told me that there was nothing I could do except wait. Nothing? My gut told me otherwise.

So, after reading about the MD Anderson curcumin-myeloma clinical trial and getting in touch with one of its main researchers (who sent me the curcumin protocol), I began taking curcumin in Jan 2006. Like "Anonymous," my levels went down. Yay! Currently, with each test, they go up a bit, then down a bit. In spite of this (at times scary) fluctuation business, though, the main thing is: I have been stable for the past 3+ years. And by the way, my BMB report in 2007 showed less than 40% evil cells...as a result, my hematologist now tells her MGUS and SMM patients to read my blog.

Ah, yes, I have a blog, it's called "Margaret's Corner," where I write about my life in Italy, my 4 crazy cats and my (yes, tall dark & handsome!) Italian husband, and also my various "experiments" with scientifically-backed, non toxic substances (I don't want to tick my evil cells off, either!). Etc. Anyway, if you'd like to get in touch with me, please have a look...

Take care, and, as Karen writes, hang in there! :-)