Pat’s Place: Following Multiple Myeloma Research Can Be Frustrating, Yet Exhilarating!
Many multiple myeloma patients and caregivers live in a new, Internet-centered world.
As recently as five or six years ago, someone with multiple myeloma would have heard about a new anti-myeloma therapy from their oncologist—probably when the new drug was being prescribed for the first time—or possibly while deciding whether or not to participate in a clinical trial.
Man, have times changed! Not only are there as many as 90 different myeloma-related drugs or drug combinations being researched now, but thanks to websites like The Myeloma Beacon, it is easier than ever before to follow the progress of these drugs.
This is a good news/bad news type of thing. The good news: It is far easier for all of us to stay hopeful, with so many possible new drugs on the horizon. The bad news: Following scientific advances like it is a sporting event can become exasperating!
Human nature leads us to ask: “Why aren’t more of these new drugs available now? What’s taking so long?”
Of course, if we didn’t know there were so many promising drugs in the pipeline, we might not get so frustrated!
As a former high school football coach and a big-time college football fan, all of this reminds me of the booming off-season high school football recruiting news services that have popped up in recent years.
Thanks to the Internet, fans are now able to follow the high school careers of players whom their favorite college football team may be recruiting from all over the country. ESPN even features an all-day program that covers national high school signing day in February, ranking teams based on the players who sign letters of intent to play with a particular school.
It’s sort of like following the NFL football draft. Fans hope getting a key, star recruit or two will turn around the fortunes of their favorite team.
But high school recruiting is a very inexact science. After all, we are dealing with 18 year old kids here. Some are early bloomers and don’t grow or improve much with time. Some can’t handle the freedoms and responsibility of college life. Some don’t have the educational background to do college level school work. And some continue to grow and improve.
I apologize to those of you who are not college football fans, but the analogy between college recruiting and the fans who follow the process—and those of us who are hopefully watching the research progress of different anti-myeloma drugs—is nearly perfect.
Like trying to handicap and predict how well young high school athletes will perform in three or four years is next to impossible, so is trying to predict which new drugs will be the next, best hope for myeloma patients.
There are simply too many variables for any of us to accurately predict the future.
Predicting college football recruiting has become a big business. So called “experts” and pundits give their opinions about different players and programs online, in print, and on television.
Multiple myeloma research hasn’t exactly become a spectator sport. But more and more people are following myeloma-related research. Many patients follow things closely and try to predict which drugs will have the fastest, biggest impact on our futures.
But in the end, we are all just guessing.
Still, I find following the process worth a few short-term frustrations. For me, just knowing there are so many researchers, doctors, and clinicians working around the clock to try and improve our lives leaves me feeling hopeful, indeed!
That’s two weeks in a row I’ve shared how and why I can stay so positive in the face of my recent multiple myeloma relapse. I hope some of that positivity is contagious!
Feel good and keep smiling! Pat
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Pat, Thank you, as always, for your insightful comments. The intensive research activity is hopeful. Cheryl
I think it is, Cheryl! I expect to use a number of these soon to be available drugs so I can be around for a long, long time...
Pat, I agree it is somewhat of a double edged sword. It is incredibly exciting to know that there are literally dozens of drugs in the pipeline under investigation to treat multiple myeloma and difficult to know which ones will ultimately pan out. The situation however is even more complicated then handicapping an up and coming athlete. The response rates with many of the drugs talked about seems to be in the 30-50% range. A big part of this is likely because as we we know myeloma is really not just one disease, and each person may respond very differently to a given drug. The answer my lie not just in the drug but in the biology of an individual patients tumor. I have no doubt that over time this will continue to be worked out, to better match a persons tumor to a particular drug through genomics. This too takes time, and while great progress is being make has not become clinical reality. I too remain very hopeful and encouraged by the progress being made and like you have become something of a myeloma information junky.
Arnie Goodman
Good point, Arnie! I just look at the odds. If both carfilzomib and pomalidomide become available in the next year or so (carfilzomib most likely first) then I add the two up and it gets me to almost 100%. How is that for optimism! Seriously, it is all about the combos. So vorinosat, panobinostat and others should do the trick for many of us when combined with the already available "big three." Plus, I believe you will soon be seing four/five/six drug combos. Myeloma seems easy to fool--for a while. Great news that for many of us, simply adding an additional "helper drug" may do the trick for a year or two, buying us more time- Pat
I have been following the myeloma beacon and Pats comments which I always find interesting and informative. However I find here in Australia the Doctors are alot more informative about what is available. When my husband was diagnosed in 2009 (aged 56) with STAGE III IGA Myeloma (non secretory with 17p deletion), they immediately went to the pharmaceutical company who gave Graeme Velcade while it was not yet available on Government funding. One of my critiscisms of myeloma forums and researchs is the lack of information on just what type of Myeloma people have which makes it hard to compare with Graeme's case. i.e. What Type ? What STAGE it was diagnosed in; Chromasomal abnormalities etc. These appear to be critical factors for the doctors to decide how to treat Myeloma. Graemes prognosis is 24 mths (He is at 20 mths),He has 2 Allergenic stemcells and 1 pending donor stem cell transplant with Maintenance on Velcade (now on PBS but only available for 12 mths in Aus). The doctors are discussing putting him on Revlamid (Lenolinamide) after the Donor transplant for maintenance treatment. Given the news coming out of the recent Paris convention I think the Doctors here are pretty switched on. These forums allow me to keep up to date and check what the doctors are telling us.
While we remain optomistic, there is no doubt in our mind that the donor transplant is the only solution to give Graeme a chance of a longer survival and despite the risks he does not really have any other option left at this point .
My point is that this is true for my husbands case but would not be true for an IGA patient without chromosmal abnormalites or some one with smoldering Myeloma, or STAGE I IGG Myeloma. So if we are going to have informative forums I believe we need to be more detailed so as not to mislead others.
Joni-
Very insightful! Myeloma treatment needs to become more individualized, based on characteristics like the ones you describe here. A donor transplant is a bold choice. I wish both of you the best of luck! Pat
Pat, Thanks for you continuing comments. The primary and final suggestion from us would be.....go quickly to the Myeloma Institute for Reasearch and Therapy [MIRT] in Little Rock, AR. Dr. Barlogie and his extensive team have the best results and care available! Check it out.
Forrest & Patty Anderson
Forrest and Patty-
Thanks for the suggestion, and I'm glad you have so much faith in UAMS, or MIRT, as you call it. (They sure use a lot of acronyms over there, don't they?)
This is a prime example of being limited by our health care system. My insurance would not cover a visit to Little Rock. My harvest was done at Mayo Clinic four years ago. Returning there might be something I would consider, but insurance won't cover that, either.
I am fine with Moffitt doing the SCT. I would have the option to travel four hours to Mayo Clinic-Jacksonville, but it will be easier on my family and caregivers to stay closer to our new home- Pat
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