What is Your Multiple Myeloma Prognosis or Life Expectancy??  NO ONE KNOWS!  But ….


Which way do we GO??

I just may be a bit overdramatic on this one, but not by much.  First let me explain why I make this assertion.  When you come to a fork in the road it would be nice to know which of many paths to follow- transplant, no transplant, auto or allo transplant, drug combination, number of drugs in the combination, treatment facility, doctor, location, insurance limitations, et al.   But in order to make these decisions you need the information to differentiate one choice from another.  On the path shown above there is no information.  No sign to tell what town is just up the road, if one is a dead end, if they both end up in the same place but one is twice the distance of the other, or if one leads to Utopia, and the other to a cliff.  Information on which is the better choice would be nice, and lacking knowledge you might as well take Yogi Berra’s advice, “If you come to a fork in the road, take it!”  I frankly would prefer to follow a well researched plan I program into my GPS!  

On October 24th, Dr. Richardson, a multiple myeloma specialist, will provide us with his incites into the Dana Farber clinical trial which has been established to answer the question, “To Transplant or not to Transplant”? To sign up for this broadcast CLICK HERE.  Because it is a clinical trial, it must follow strict guidelines to insure that the results can be measured and compared, one treatment arm to another.  What did I just say?  That the results can be measured, and therefore a decision can be made as to which arm of the study is the best.  And what are those measures?  Some of the most important are response rate, PFS (Progression Free Survival), QOL (Quality of Life) measurements, TRM (Treatment Related Mortality),and I would say the most important OS (Overall Survival).  So if these measures are so important in determining success of one method vs. another, then why are they not being accumulated by all hospitals for all cancer patients?  These are the most important measurements for each patient, yet they are not in general being consolidated at each hospital as part of their Standard Information Systems Package.  

I can not tell you how proud I am of the doctors who have already found measurements so important that they have had their data assembled manually just to be able to provide it for their own use, and so I could provide it to the myeloma patient community. Those remarkable doctors are those listed on the Home page of www.myelomasurvival.com.  So why don’t these hospitals just accumulate this information for their clinical staff?  I DO NOT KNOW!  Administration Priorities?  What is of greater importance than the survival of their patients.

As I mentioned earlier, I am hoping the program that Dr. Hofmeister, of The James Cancer Institute, has developed  is  a possible breakthrough for providing these very important cancer performance measures to all doctors, researchers, patients, and caregivers. Dr. Hofmeister will be on Cure Talk Myeloma Support Group hosted by Pat Killingsworth on October 29th.  To sign up CLICK HERE!  Recently Consumer Reports conducted a study of Medicare patients and compared the outcomes at 2463 hospitals, and this study has provided some shocking surprises.   I will provide a blog post on this in a few weeks.  You can read about this study if you CLICK HERE.  

How far would Columbus have gotten without the measurement tool below on the right  (the sextant)?

For more information on multiple myeloma go to the site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1