Riding The Wave – Multiple Myeloma

“It’s not the years in your life that count.  It’s the life in your years.”  – Abraham Lincoln

This is an article on an MD Anderson Study.

Complete Remission Predicts for Long Survival of Patients with Multiple Myeloma.

I’m not so sure about what is being reported here as being terribly significant and I’ll tell you why. First of all, there are quite a few MM patients I have met that are in PR and have been for many years. Living well and surviving in excess of the timeframe given for MM patients. CR is certainly something we all feel we want to attain, and I can’t say I wasn’t happy to hear Dave had achieved it. But I continue to find it fleeting. Imagine how the physician’s have felt over the years!

I don’t mean to belittle CR, although admittedly I sound very much like that is exactly what I’m doing. Its just that, it is fleeting and so while part of me got excited for Dave, it was tempered immediately by the continuing fact of it being, more often than not, a temporary attainment.

This stuff has permeated the PC Police as well. “Remission” in cancer in general has us all a bit tainted I think. We know when we hear it, that we are happy for our friend or loved one, but that it also is often a temporary attainment. Now they are using the words, “Cancer Free”. Same damn thing. But when I met someone, the first time I heard it, and he told me that the reason he uses “Cancer Free” is that remission implies it is still there and coming back. Ok, its a head game, I get it. And you know me, I’m definitely in support of getting your head in the game however you need to.

Now, I know this doesn’t sound like Happy ‘ol Lor. Agreed. Which is why I write and talk a lot about not worrying about stuff that hasn’t happened yet. I could get all focused in on this LITTLE, nasty, Myeloma, tidbit. But I’m not going to and I hope you find a way not too either. It takes away from whatever time you do have. Imagine, realistically, waiting and worrying to hit that three year mark or five year mark. That is 1,095 & 1,825 days, respectively of worrying about something that didn’t happen! Don’t do it. Really.

The last bullet “2% of patients remained in CR for more than 10 years” annoys me. Its just too low, if that’s what we are going for, CR, than let’s get those numbers up!

But what I LOVED about this report is the median survival numbers!

“After two years patients with CR had subsequent median survival of 9.7 years…” Now we are talking! Now we can see that the CR may play a role! And being the median of course, there were those who didn’t make that target, but there are those who surpassed it. Now this ties in nicely with the numbers that have been coming out of Little Rock. Its extremely heartening to see other researching facilities making some headway. Make no mistake however, MD’s treatment protocols are different than UAMS, so you will still have to mire through all of that. (Sorry Pat)

I know that for years and years, Dr. Barlogie hammered and hammered CR! CR! CR! (Thus his pushing always for the SCT to attain the CR.) He was ridiculed by many for his focus on this, from all that I can gather in my research. Probably largely due to the fact that whether a patient made CR or not, they still weren’t getting much past the 3-5 year range, so doctors didn’t see the point in attaining CR. A few years back, Barlogie decided to back off on his hammering of the importance of CR. Probably helped by all the new novel therapies that are keeping our MMers in check, with or without SCT or CR. And so now to find that it is becoming important to others looking at the data is interesting, and certainly validating to Barlogie. It continues to make me feel that bungee jumping effect of being yanked around (sans the exciting exhilaration that some get from that activity, it just gives me a headache). I think it will just be what it will be for a few more years yet.

Keep researching guys! We will put up with the yanking around if you can just get it sorted out!

Tags: article, CR, long survival predictions, MD Anderson, postaweek2011