- The Myeloma Beacon - https://myelomabeacon.org -
Pat’s Place: I Want My Money Back!
By: Pat Killingsworth; Published: October 20, 2011 @ 11:02 am | Comments Disabled
One week ago, I learned that the autologous stem cell transplant I endured this summer at Moffitt Cancer Center in Tampa, Florida, has most likely failed.
What do I mean by “failed?” I entered the hospital with a monoclonal protein (M-spike) reading of 0.2. There was also no trace of myeloma in my bone marrow. Now--100 days later--my M-spike is an alarming 0.5.
My wife Pattie and my doctors were stunned. What percentage of auto transplant patients with extremely low tumor burdens like mine have higher M-protein levels 100 days post-transplant than before the transplant? The physician’s assistant who worked closely with me throughout the transplant process thought “less than 5 percent.”
So let me get this straight. I spent 16 miserable days as an inpatient locked up inside the bone marrow transplant unit, an additional week living in a motel room nearby, and the next two months recovering at home.
All of this at a cost of over $100,000 for a procedure that didn’t work.
Lucky me! My response: “Where do I go to get my money back?”
To be fair, the service was very good. My nurses were attentive. The room was large, brand new and top-notch--with a green, lush vista view.
I even got to go home a full 10 days ahead of schedule.
But good service and plush accommodations don’t mean a thing if a procedure doesn’t work-- making it hard to recommend it to friends and family!
I went into the process with my eyes wide open. I knew there was a chance my stem cell transplant might not work. After all, the median length of time an auto transplant works in a multiple myeloma patient is a short 18 months.
That means one half of all auto transplant patients experience an improvement, then stable disease for at least 18 months. But it also means one half of all recipients achieve a much shorter--or no--response.
But everything I read--and every myeloma expert I spoke to--reassured me I would be in the “better half.”
Why? I am relatively young (55 years old) and healthy. And the fact that I was able to achieve a complete response for over two years placed the odds at over 80 percent that things would turn out well.
Surprise! That’s the look in the eyes of my doctors and staff members after they learned the news.
I had so been looking forward to a few, relatively normal years following my transplant--a drug-free holiday of sorts.
Last week’s test results meant I would need something called consolidation therapy instead. In my case, most likely a repeat of the Revlimid [1] (lenalidomide)/Velcade [2] (bortezomib)/dexamethasone [3] (Decadron) (RVD) combination that my doctors prescribed as pre-transplant induction therapy.
RVD worked before, so chances are it will work again. But reflecting back, it didn’t exactly blow my multiple myeloma away. Instead, it produced an underwhelming response which delayed my transplant start date while we squeezed in a couple of extra three-week treatment cycles.
The good news? Maybe calling my auto transplant a failure is a bit premature. Many have suggested that the 0.5 number could drop on it’s own over time, as the residual effects of my transplant play out.
And the hope is RVD may even work better this time, now that my myeloma is more vulnerable and receptive, post transplant.
Hmm. If that proves to be the case, maybe my transplant wasn’t a failure after all!
Never mind? How about “stay tuned?”
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Article printed from The Myeloma Beacon: https://myelomabeacon.org
URL to article: https://myelomabeacon.org/headline/2011/10/20/pats-place-i-want-my-money-back/
URLs in this post:
[1] Revlimid: https://myelomabeacon.org../resources/2008/10/15/revlimid/http:/myelomabeacon.org/resources/2008/10/15/revlimid/
[2] Velcade: https://myelomabeacon.org../resources/2008/10/15/velcade/
[3] dexamethasone: https://myelomabeacon.org../resources/2008/10/15/dexamethasone/
Click here to print.
Copyright © The Beacon Foundation for Health. All rights reserved.