Yesterday I shared how–after almost four years–I have decided to go ahead with a stem cell transplant.
The decision wasn’t as difficult as I made it seem. Its time. But I wanted to detail how and why I made my decision to help some of you who may find yourself in a similar situation in the future.
The important thing for newly diagnosed patients to remember is your don’t need to rush to transplant. Take the time to get a second/third opinion and remember there are a number of treatment options which include, but are not limited to getting a stem cell transplant.
But what then? What happens after your transplant is completed?
As recently as a few years ago, once your transplant (SCT) was done, in a sense, so were you. No more chemo! With luck, after several months of recovery, you could live a relatively drug free life for two or more years.
But recently, research has proven maintenance therapy–usually Revlimid or thalidomide taken regularly after a SCT–significantly delays the inevitable return of active multiple myeloma.
I want to stop here and note how these studies don’t prove patients live longer by using maintenance therapy after ACT–yet. But common sense tells us if you can slow time to disease progression by up to 40%, can a longer median life expectancy be far behind?
But these studies are too new to tell. So in the meantime, maintenance therapy is becoming the standard of care following a SCT.
BUMMER! One of the few positives about having to endure the pain, fatigue and inconvenience of undergoing a SCT was the drug holiday you were able to enjoy after transplant.
But hold everything! Now there is data showing up in a number of international studies about how using Revlimid for maintenance may cause secondary cancers.
This data is new, but a lot of myeloma experts are very concerned about this. My specialist, Dr. Melissa Alsina at Moffitt Cancer Center in Tampa, is part of this group.
While we were discussing details and scheduling of my possible SCT, I asked Dr. Alsina how she felt about the Revlimid/secondary cancer scare. “I am very worried about this.” she replied. “It isn’t just leukemia, but they are finding some nasty solid tumors and other cancers as well.”
Even before learning about this, I was leaning toward not using maintenance after my SCT.
I asked Dr. Alsina this: Who is to say–if I don’t take maintenance, but instead wait to use Revlimid, Velcade or something else once my myeloma returns–in the end I wouldn’t end up in the exact same place? She nodded yes. Her response: “I agree! Your are exactly right. No one knows for sure.”
Now at least I know my doctor won’t be pushing me or pressuring me to use maintenance post SCT–so I’ve got that going for me!
I was going to provide you some links to past articles about maintenance therapy. But there are dozens of them, written as recently as December of last year.
Instead, simply type “maintenance therapy” into the query box, located just above this post in the upper right side of the page. Then click-on the spy glass icon and it will pull-up all of the info about maintenance therapy you will ever need.
I hope sharing how and why I have made my decision to transplant will help you on your multiple myeloma journey. It helps me to write about it–and to receive so many supportive emails and comments from my readers and friends.
The decision is made. No worries! Feel good and keep smiling! Pat