I’ve Got My Mind Set on a Cure!

Michael Tuohy |

If you have not yet noticed, I’m a fan of good music. I’ve had bands since the 70s, growing up with what’s now called classic rock. Funny how time goes by, and it’s now “classic.” I guess it’s a good thing, because I grew up in a time when music had leads and lyrics that took you on a journey somewhere and meant something. Since my journey now has included multiple myeloma for the last 18 years, music still is cathartic to my soul and lifts my spirits. I’ve incorporated a link to a song in each of my last two blogs that I feel are relevant and fun. I hope you are enjoying the connection!

As I was writing this blog, my wife, Robin and I were having dinner, and the song by George Harrison came up in my playlist: “I’ve Got My Mind Set On You.”We both heard the lyrics at the same time and knew this would be the next song to add into my blog. The only change would be from “I’ve got my mind set on you” to “I’ve got my mind set on a Cure!” Check out the link below, and I hope it brings a smile to your face and hope to your heart.

Our days at ASH are long, but amazing. Not only are we attending oral sessions recommended by Dr. Durie and Debbie Birns, but we are also going to a variety of other programs, and having meetings with IMF ASH pharma sponsors. Each of our sponsor meetings were encouraging and productive. They came to meet with patients at ASH and to really listen to our challenges and suggestions. My thanks to everyone that took the time to meet with us and care. It matters: it’s our lives.

On Saturday morning, we attended an Education Program on “Approach to the Treatment of the Older, Unfit Patient with Myeloma: From Diagnosis to Relapse.” Treatment Perspective 1 by Thierry Facon, MD, Lille, France; and Treatment Perspective 2 by Tanya Wildes, MD, Saint Louis, MO with Kenneth Anderson, MD, Dana Farber chairing.

Data shows that older cancer patients are underrepresented in clinical trials. The majority of patients participating in clinical trials are 65 and under. There is a New Stratification of Elderly myeloma Patients IMWG Frailty Score showing Fit, Intermediate, and Frail and dose and regimen recommendations.

Here is another slide with suggested dose modifications that patients may wish to discuss with their multiple myeloma specialists:

For Newly diagnosed elderly patients, there was data shown for Velcade, Melphalan, Prednisone (VMP) vs Darzalex (daratumumab), Velcade Melphalan, Prednisone (D-VMP) in Progression-Free Survival (PFS) showing 50% reduction in the risk of progression or death in patients receiving D-VMP.

The MAIA phase III study of Darzalex (daratumumab), Revlimid, dexamethasone (D-Rd) vs Rd in transplant ineligible newly diagnosed multiple myeloma patients showed a 45% reduction in the risk of progression or death in patients receiving D-Rd. Adding Dara to Rd resulted in deeper responses. We’ve learned across all treatment platforms that deeper responses typically lead to longer progression free survival. So in my mind, whatever treatment you are on, the lower you can go the better!

For the Relapse/Refractory elderly patients, currently many options exist with little consensus on treatment choice.

The conclusions were:

 

While I am not a medical professional, I share my experiences, challenges and tips with many myeloma patients, all over the US, and my best tips are to (1) seek out opinions from myeloma specialists and (2) maintain a life-long love for learning; learn and keep learning about myeloma! It’s important that we work with our specialists to have a say in our treatment options – Shared Decision Making. We should inform our specialists of our goals for treatment so together we can make our best treatment decisions.

Now it’s time to enjoy some “classic rock” and I hope it inspires you to have “your mind set on a Cure!”

Click here to enjoy George Harrison’s “I’ve Got My Mind Set On You”

2 Responses to "I’ve Got My Mind Set on a Cure!"
  1. Tom Luca says:

    The whole song fits with the ‘I got my mind set on a cure’ theme. Good job, Mike & Robin!

  2. Darlene Jessee says:

    Mike and Robin, You both are amazing, perfect song. I enjoyed the video, could not stop my foot from moving to the beat. Hugs to both of you, Darlene Jessee

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