Myeloma Maintenance Anniversary

Time flies when you’re having fun!

And time, as we Multiple Myeloma patients know all-too-well, is a precious commodity. We all want more of it! And some of us are picky enough to want a good quality of life, too.

I wouldn’t characterize fighting Multiple Myeloma as a fun-filled joyride to a picnic, but the two years that I’ve squared-off against this formidable foe have passed rather quickly. Maybe it’s my quirky attitude which has allowed me to see the highlights among the low lights.

Or maybe it’s the Oxycodone! Just kidding – it’s probably a combination of a lot of things…and the Oxycodone. Hey, ibuprofen hasn't worked well on my collapsed vertebrae and other broken bones! 

If I’ve learned anything while being the protagonist in this chaotic, life-changing mess that I’ve gotten myself into, it’s been to grab hold of and celebrate the seemingly small, positive things that happen along the way.

Yesterday, I quietly commemorated my first annual anniversary of weekly Velcade® infusions, a 21 days per month regimen of Revlimid® capsules and once-per-week dexamethasone tablets taken to chase the Velcade®. This Velcade® infusion is administered with high hilarity and pomp and circumstance (and great skill) by the terrific oncology nurses at Skaggs Cancer Center in Branson, Missouri.     

As Dr. Barlogie, Dr. Nair and the world-class MIRT team guided me into a complete response (CR) through high-dose chemotherapy and stem cell transplants, I knew that everything wasn’t a ‘done deal’.  I saw the wisdom in continuing to batter MM with the VRD arsenal.

After roughly 16 or 17 months in CR, we continue to use this combination of novel chemotherapeutic maintenance agents, and quarterly infusions of the bisphosphonate Zometa®, to keep up the onslaught. These guys are trying to find a cure for my MM. I love them for it.

Whether you believe in the maintenance therapy scheme (some practitioners don’t), it has kept my M-spike at 0.0 and my side effects have been tolerable. While Revlimid® and Velcade® have lowered some of my blood counts, I generally feel good, not 100% like when I was 21 or 31 or 41 for crying out loud, but not too bad at 51. I have very mild neuropathy, not enough to dictate a dosage or medication change.  What we in the Myeloma world don’t yet know is whether maintenance will impact my overall survival time.

Clinical trials and errors (that’s what I said!) will get us ever closer to the answers we seek about all aspects of Myeloma treatment. I’m happy to help, in my small way, to ensure that we keeping moving ahead.

I am grateful to the pharmaceutical companies and their researchers (and the FDA oversight!) that have developed the drugs I use in maintenance. Thanks to the Celgene Corporation for Revlimid®, Roxane Laboratories Inc. for the generic Dexamethasone and to Millennium: The Takeda Oncology Company for VELCADE®.

Do I wish the medicines were less expensive? Yep! Am I grateful to my insurance companies for working with me to be able to better afford these wonder drugs? Absolutely! Am I aware that they both want to make money? You bet! If they don’t make money, they don’t develop Myeloma drugs and cover these orphan cancers. 

Anyway, one year of maintenance down, two more to go! Maybe by then we will have discovered that diet coke and pizza, consumed in exacting quantities, will provide a cure for MM. I want in on that trial. At least I hope that they don’t find that that magic novel gastric agent combo is what caused it!


Back to Little Rock next week for my latest three month check-up. MRI, bone & bone marrow biopsy, gene array, blood work and a Dr.'s appointment.. Maybe I'll run into some of you there.   

Be good out in Myelomaville! Keep fighting!

Sean

Myeloma Beacon Total Therapy Article

My Myeloma Beacon article thoughts on Total Therapy at UAMS.

http://www.myelomabeacon.com/news/2010/11/02/seans-burgundy-thread-my-adventures-through-total-therapy/


See you around in Myelomaville!

Reliving the Old Days... Sort Of

I received a warm, beautifully written note via a Facebook personal message a couple of  weeks ago.

John described his new home on the Atlantic coast of Florida and how well his kids were doing in their young work lives. Theresa, his wife, had taken early retirement from many years as an executive assistant with a marketing company and was looking forward to volunteering in their new community. John said that she was even prettier than she was in college.

He went on to express how sorry he was that I had been battling Multiple Myeloma. He looked MM up on the internet and he lamented how difficult it must be to face a situation like this, but if anyone could get through it, it would be me. I was always the strong one in the group.

He then recounted that I was the instigator of the practical jokes (remember the Sigma Nu party?) and good times we had in our undergraduate days at Florida State University and how much he had thought.....

WAIT!!

I didn't go to Florida State University! Come to think of it, John and Theresa's names didn't at all ring a bell. Sigma what? I know that chemo brain did interesting things to me, but as far as I know, I haven't suffered any amnesia or loss of identity.

I sent a message to John thanking him for his thoughtful note recounting the 'good old days' and how much fun it was to read, but...

I also gave him the good news that his friend from yesteryear, Sean Murray, most likely didn't have MM.

A couple of days later I got nice follow-up message from John and, apparently, Theresa thought that my picture looked a lot like John's old buddy, Sean. The mix-up was put squarely on the shoulders of a friend-of-a-friend-of-a-friend. John thinks that Theresa has too much time on her hands. A good laugh was shared by all!

The good news is that the other Sean Murray does, indeed, not have Myeloma.  Looking forward to hearing those same words about this Sean Murray some day!



Stay connected out there in Myelomaville!