Blood tests at two locations – Moffitt Cancer Center and Florida Cancer Research Institute–confirm that my M-spike is gone.
How do I feel about the news? Apprehensive. Hopeful. Exhausted!
Apprehensive because this is the second time I have been in remission. The first came after ten months of Revlimid and dexamethasone therapy that worked so well, I decided to delay getting a stem cell transplant.
I was a bit of a groundbreaking rebel at the time. Most newly diagnosed patients my age back in 2007 followed their doctor’s advice and underwent an autologous stem cell transplant (ASCT or SCT) immediately after three or four months of induction therapy.
But not me! I will never forget the look in my Mayo Clinic doc’s eyes and I asked, “So if I’m almost in remission after three short months, why transplant now?” He didn’t fight my eventual decision to wait. But I wouldn’t have called him a cheerleader, either.
Six months later I was in complete response (CR), which was confirmed by a bone marrow biopsy which confirmed no myeloma cells were present.
Why use the term/acronym CR instead of remission?
Well, for those of you that are new to all of this, the term “remission” isn’t often used in the myeloma world. Instead, you hear terms like “good partial response” (GPR) or “complete response,” (CR) instead.
I think my myeloma specialist chose the word remission because I have yet to undergo a bone marrow biopsy (BMB) to confirm that I’m in CR. Add a few more tests and I might possibly be in something called stringent complete response (sCR);
Too many acronyms, right?
At this point, who cares? Call it remission, CR or sCR. It’s what it all stands for that’s important.
I’M GOING TO LIVE! At least for a while.
The term “remission” is usually saved for survivors of other types of cancers, many of which offer the hope of a cure. But with multiple myeloma… Well, we’ll save the “Is there a cure?“ conversation for another day.
So why do I feel apprehensive?
During the past year I have been on an emotional roller coaster ride. But the last six months of that ride have all been up. As my numbers continued to drop, I’ve lived my life in an upbeat way, knowing that my numbers were headed in the right direction.
But there’s only one way for my numbers to go. So I’m apprehensive about how long my remission might hold. Sounds silly, right? Everyone works so hard to help you reach remission, and when you finally get there, I’m already thinking about what I’ll do when it ends.
That’s human nature. Always worrying about something in the future that we can’t control. How does the saying go; “It’s not about reaching your goal, it’s all about the journey getting there.”
OK. So I’m a bit apprehensive. But I’m also hopeful. Hopeful that my remission will last longer than the average two years. That’s the average for a patient following their first relapse who is relatively new to using one of the two main novel therapy agents, Revlimid or Velcade. (Try saying that fast three times!)
But even if it only lasts a year or two, by then pomalidomide will have joined carfilzomib (Kyprolis) as the exciting new kids on the block. They’re both going to be the first two new, anti-myeloma therapies to be approved in the past six years!
And there may be others, too. All offering hope that after my remission ends, my body will be healthy enough–and strong enough–to withstand more therapy to help keep me alive for still another year or two.
Which brings me back to “exhausted.”
After hearing the great news, I wrote earlier that I was apprehensive, hopeful and exhausted.
We’ve covered the first two. So why exhausted?
Nine months on RVD (Revlimid, Velcade and dex) have left me plumb worn-out. My neutrophil (ANC) counts continue to hover around 1.0, which is way too low. And my platelets are low, too.
I will describe my maintenance regimen in an upcoming post. But although rigorous, it should be an improvement over all-out RVD. I call my new maintenance therapy “RVD light.“
So my body should recover quickly with time. And speaking of time, what will happen after “the average two years for a patient following their first relapse who is relatively new to using one of the two main novel therapy agents, Revlimid or Velcadez”–and I try pomalidomide and/or carfilzomib?
After that, all bets are off!
Looking into the future, I see a time when all of the work I do now–eating well and exercising regularly–will pay-off. My body will bounce-back from nearly a decade of constant therapy, just in time to start a new, long term treatment regimen that we haven’t even thought about yet.
The take-away message here is I plan to be around for a long, long time!
You all understand that I feel it is important to share my true feelings with my readers. I believe that being overly hopeful and optimistic when it isn’t real isn’t helping anybody.
I like to pass-along the little things–the inconveniences, apprehensions, stress and pain of being a multiple myeloma patients with my readers–so patients and caregivers will understand that they aren’t alone. I share many of the same frustrations and insecurities that a lot of you do.
That said, my take-away message that I plan to “be around for a long, long time!” should ring especially true.
My optimism is genuine. My hope is real. HECK! I feel like I’ve gotten my life back!
In case you are interested, you can read more details about my new found remission in my monthly column in the Myeloma Beacon. I have mentioned before that links back to the Beacon rarely hold-up. In one days time a red line will form, running through the link. A day or two later, the link will shut-down altogether.
So, here is the web address for my column. Sorry, but you will need to copy and paste it into your browser:
The most exciting part of all of this is that it looks like I’m going to have a lot more time to connect with all of my myeloma friends. Which is where I’m headed now. I’m writing this on an American Airlines flight, on the way to speak to the Orange County, California, Multiple Myeloma Support Group this evening.
I can’t think of anything better to do with my new-found time.
Feel good and keep smiling! Pat