As I mentioned in a post from yesterday, I met with Dr. Alsina, a myeloma expert with the transplant department here at Moffitt Cancer Center, at the University of South Florida in Tampa.
The news was not unexpected. Some good, some bad. It just depends how you spin it.
We met to go over my PET scan test results from the previous week. The results were ominous.
I had planned to write about all of this last evening. But I needed some time to get my head around the results of our meeting.
My body isn’t riddled with cancer. But there are clear, brightly lit signs it has returned. The largest is the golf ball sized “hot spot” in my right hip. There are also additional, much smaller areas of myloma cells in my 10th posterior rib, sternum, iliac crest on both sides of my hip, one of my cervical vertebra in my neck and a small spot on my skull.
When I was first diagnosed a few months shy of four years ago, this wasn’t the case. There weren’t a few, isolated spots showing up on my MRI film. There were dozens of holes of various sizes throughout my body. I did not have a PET scan at the time. My doctors didn’t need one. I had a sky-high M-spike and crumbling bones from my neck down into my legs.
There wasn’t a single spot on one rib. I had sections of rib missing–completely gone. My cervical, thoracic and lumbar spine had started to disintegrate. My right femur was at risk of serious fracture.
This latest report should seem more manageable. But that doesn’t make it any less insidious.
Don’t get me wrong: Lots of people live with pain in their backs, legs and necks each and every day–many of them make due while enduring worse pain than me.
But being able to visually see why my pain exists–that a twinge in my sternum or dull pain in my rib or sharp pain when I walk briskly in my hip show up as brightly highlighted, glowing spots on PET scan film–that changes everything.
In the past, I have shared with my wife, Pattie, how I understand there are many people out there with chronic pain worse than mine. But there is something unseemly and awful when one knows their pain is caused by cancer.
My M-spike is currently only 0.6. But my myeloma–which has been slowly creeping back for over a year–has already started damaging my bones.
Obviously, all of this is the bad news So what is the good news?
Having just turned 55 years of age, I am still relatively young by multiple myeloma patient standards. I have worked hard to eat well, exercise and keep my body well conditioned. My weight is good. My blood pressure excellent. My heart checks out. And my kidneys are fine–thank God!
I have lots of treatment options still available to me. Lots of “bullets left in the chamber,” as my good friend and fellow myeloma patient blogger, Nick from Los Angeles, would say.
I have yet to try Velcade. I haven’t used dexamethasone for years. And I have yet to undergo even one stem cell transplant. Instead, I have been able to rely on Revlimid alone for almost three years. This is a good thing… Buying almost four years of life while only using a single therapy.
But now it is time for a major therapy course correction.
I had hoped I could buy myself another six months or so before I had to make any major therapy decisions. My PET scan results say otherwise.
Dr. Alsina had set 1.0 as the arbitrary, magic number as the time for us to reevaluate our treatment strategy. My PET scan results make it plain to see I can’t afford to wait that long.
I would like to pause here and interject that now is the time I would recommend my fellow multiple myeloma patient readers consider seeking a second opinion. I am at a treatment crossroads: Do we simply adjust my anti-myeloma drug mix and try to control my myeloma, or do I discuss the pros and cons of undergoing a single or tandem stem cell transplant.
So I still have a lot of options. My pain is inconvenient, but I am still able to control it using Tylenol and oxycodone. I have a loving wife who cares deeply for me. My dog, Finnegan, has recovered from major surgery and is doing fine.
I am still able to write and share my experiences, with the hope my journey can help others. I have the support of my friends, family and readers. Life is good.
My regular readers must know what is coming next: I’m not going to share the what, when and whys my new therapy course will take until tomorrow. Sorry! But I have calls to make–and lots of thinking to do–before I can write the next chapter of this story.
Feel good and keep smiling! Pat