Friday, November 12, 2010

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

7 comments:

Stiff Competition said...

Sean, I cannot imagine what you are going through, but applaud your courage and approach to this entire journey. I love the blog and cannot wait for the day I read your post stating that you are cured. It will be the best read of my life.

Stay strong!

Harry

Sean said...

Hi, Harry! Thank you, my friend. Life is a tremendous gift and my faith and loving support from friends and family sustains me. We're not giving up now! My journey is easier than many other's walks. I'm grateful for all that I have been given.

Sid said...

Sean,
Celebrations on the myeloma highway should be taken whenever the opportunity arises.
Good health to you.
Sid

feresaknit said...

Happy Anniversary one year anniversary and I note you are about at a Happy Two Year Anniversary!

Wow - I didn't realise you where THAT old - It must be your much younger life that keeps you sprightly! ;D

Or, it could be that you don't seem to act your age! I saw a saying recently along the lines of 'You don't stop laughing because you get old, you get old because you stop laughing'. :D

feresaknit said...

In my rush to be homourous/homorous I had a typo - I meant much younger WIFE!

Lori Puente said...

Woohoo! One year. Congrats!

It was one of the highlights of my day Tuesday in Little Rock to get to meet you in person. Wish we could have gone out to dinner and had a proper discussion. Next time...

So were you taken aback a bit on the cytogenics comment by the presenter? That's HUGE, was my first thought!

Kathy Van Meter said...

So glad I ran into you! You are wise and funny at the same time. I have a myeloproliferative bone marrow cancer and, lucky me, they just found mgus. Now I thought there was only one blood cancer to a customer so I know I am truly blessed. I'm thinking of mgus as the prequel to mm. I may get to read the sequel, I may not. I do know I will continue to read your blog because I am not always appropriately reverent. Might be a MissourA thing (my mom's from Linn, and I had to learn early that the "i" on the end is actually an a. I am a medical social worker by trade and shall use you as alternative therapy (hope you don't mind).

Peace.............Kathy