In my last post, I wrote a bit about my background and set the stage for an important patient goal I feel very strongly about.
Since many multiple myeloma patients are living up to a decade or more, I believe that it is vitally important to work with your healthcare team in creating a long-term treatment plan.
To review, most doctors don't feel comfortable doing this. They like to take things one step at a time and deal with whatever happens next later. In my view, this can be a big, big mistake. Because while taking things one day or one treatment at a time can help ease a patient's anxiety, it doesn't allow your doctors to plan today's treatments to complement those that a patient may need in the future.
My case is a perfect example of this. Let me share it with you.
More and more myeloma patients are choosing to delay their auto stem cell transplants until first relapse--or later. That's the path I chose over four years ago.
I still feel that I made the right decision by waiting. But after undergoing my first autologous SCT last July, I am discovering a few factors that my doctors and I never considered back in 2007.
We harvested enough stem cells for three possible transplants. Revlimid worked like magic for me. It took me less than a year for Revlimid and dexamethasone to bring me to a complete response (CR) that lasted over three years.
Wonderful! It wasn't always easy. My peripheral neuropathy (PN) slowly worsened. And my neutrophil (ANC) counts dropped to very low levels and stayed there. But hard to complain about three years of CR!
But--and there is a but--no one anticipated what I would do after I eventually underwent a SCT.
Unfortunately, my transplant didn't go as planned. My M-spike actually jumped significantly at the three-month mark. My transplant had made things worse!
But it wasn't a total loss. My RVD therapy (Revlimid, Velcade and dex) worked quite well after the fact as a consolidation therapy. As I write this today, one lab shows that I have no M-spike. Another lab shows a 0.1. Good. Very good!
But now it is time to figure out my maintenance strategy. Trouble is, Revlimid is the only drug with a proven maintenance track record. And although my transplant may, in fact, re-set my myeloma's susceptibility to Revlimid, it can't be counted on as my primary maintenance agent.
So I will use Velcade, right? But as of now, no one has any published data about when and how often to use it. (Editor's note: Dr. Heinz Ludwig and other members of the IMF's International Myeloma Working Group referred to Velcade maintenance in this article published in the journal "Blood" on Jan. 23, 2012.) And the company can't say.
I look forward to hearing answers to questions about Velcade maintenance during the June 13, 2012 IMWG Teleconference Series presentation "Making Sense of Treatment." Dr. Brian Durie says that Velcade maintenance will be one of the topics debated at this inaugural event by a discussion panel that includes him, Dr. Antonio Palumbo, Dr. Paul Richardson and Dr. Jesï¿½s San-Miguel.
Had my original specialist anticipated the maintenance quandary I find myself in today, maybe I would have started on Velcade and dex, or RVD for induction and Velcade for maintenance after I achieved CR.
So, that leaves my myeloma specialist and medical oncologist--and me of course, being an informed and actively involved patient--to put our heads together to help come-up with a maintenance plan.
Remember how I said doctors don't like to plan ahead? One way to help get them to participate is to be working with more than one doctor--strength in numbers, maybe?
In an upcoming post, I will share their thoughts--and the plan that we have set together.
Feel good and keep smiling!