Question about CR and need for continued treatment - part 3

There is a distinction here that I didn't pick up on until I'd been battling MM for maybe 1.5-2 years. CR-Complete Remission or the oft elusive "cured" parameters...is a different goal than attempting to achieve Partial remission, or a stable disease situation, and being content with that. And just like me, many newbies fail to grasp this distinction either at all, or only after they are hip deep in the decision making process over how aggressive they want to be with potential treatment choices, and are dealing with particular oncologists biases in what treatment options they are willing to consider for you. Yes, we are paying for their expertise...but we MUST realize there may be other agenda's that may be in there too (the cure vs stable disease as a goal bias, the availability at their institution of a particular trial they'd like to populate, etc.) You can't be naive about this!

At first I worked with a "hit it hard" transplant group, who collectively didn't have much experience with myeloma specifically (mistake #1.) I've since learned that myeloma is an unusual duck among cancers in general. Many general onc's don't have the time or interest to understand it's many subtleties much less all the advances in this narrow specialty area. The group had heard of allo's providing the only chance for a "cure" for MM...and a "cure" is what they were pushing me toward. Stable disease as a goal for me, wasn't even on their radar. And the situation rapidly deteriorated to just doing anything to keep me alive after I'd been hit with high dose treatments repeatedly.

With myeloma, at least in the last 4-5 years and probably for 4-5 more years yet......"stable disease" ain't such a bad place to be. And by stable disease I'm referring to those of us fortunate to have found a relatively low level of treatment .... or even just bisphosphonate therapy alone.... that seems to hold our MM at a fairly low level of activity for extended periods.

I'll take the stable disease situation I have now over the less than 40% chance I was quoted for just SURVIVING the MUD full allo that I was being nudged toward...anyday! I am so very glad I was able to find a MM specialist who would allow me to try BLt-pred instead of doing that MUD allo!!! I've got my youngest in his last year of high school now and my eldest doing honors level work now in college...after BARELY getting her into college at all with all the turmoil we were dealing with when she was in HS. (divorce, she has epilepsy that developed in 9th grade, THEN my MM, etc.) It's quite likely I wouldn't have been able to have been part of the last 2.5 years of their lives had I followed through on pursuing the "cure" my transplant group had focused on as their goal for me.

The transplant group didn't want to listen to ideas on how to achieve stable disease when I wanted to try BLT-D. It had shades of perhaps a quack approach to them at that point in late 2000, when all I had was Kathy Beymers painstakingly hand re-typed emailed printouts of Dr. Coleman's handouts from a talk he gave in Southern CA that Kathy and her husband attended (her scanner wasn't cooperating even...but she got the info to me!!! Thanks again Kathy!!!) Coleman had not yet published his preliminary findings. When dealing with other cancers...the concept is usually "cure" or complete eradication of a tumor and metastases. But MM truly is different in many important ways.

Finally grasping this "cure" vs "stable disease" goal distinction is largely responsible for me being able to finish raising my own children!

It's important to understand what one is likely to have to go through w/current treatments, to achieve and maintain a CR or "cure" long term, and the potential long term damage to your body that may be involved. We're getting closer....but the % rate for a "cure" isn't too great quite yet, especially w/ unrelated donor Allo's. In light of that type of info from this list in particular, it finally dawned on me that perhaps the better route, considering my personal goals, was to attempt to achieve "stable disease," which I've enjoyed for 2.5 years now.

And I hope you can too Beth! For most of us, maintenance of a stable disease state will involve at least low levels of something...even if only aredia or zometa. But this is something that you need to work out with an onc familiar with your situation, along w/ at least some degree of experimentation.

It's worth the effort Beth....

Helen Volkema