We’ve been following the progress of allogeneic (donor) stem cell transplant survivor, David, from Tampa, for a year. The young myeloma patient handled the difficult procedure better than most, but he openly expressed disappointment that his transplant didn’t completely snuff out his cancer.
I wrote about his thoughts in September:
Maybe David just wasn’t patient enough. Turns out his doctors had some great news for him recently. Here’s an email the BMT department head at Moffitt Cancer Center in Tampa had to say:
I see that the SPEP and immunofixation have finally become negative, and that is complete remission.
See you Sunday!
Claudio Anasetti, MD
Here is an excerpt from a CaringBridge post David wrote after hearing the news:
I read this email while on a treadmill at the YMCA. I jumped off (OK, the speed was slow – I was just warming up) and called Rona. Our new car has bluetooth so the kids heard the call. At first they could not understand why Mommy was calling Daddy a “zero” (I hope). Once the call ended, Rona explained that it meant that “Daddy’s blood was good again”.
My second call was to my mother. I told her the good news. Her response was “Finally some good news”. While her response was literally correct, it made me feel guilty for all the news that I ever gave her that was less than this most recent delivery. The power Jewish mothers have over their sons.
When we sat for dinner, I made the following announcement to the kids and Rona:
“Daddy learned today that the doctors at Moffitt feel that my blood is now fully healthy. The month I had to spend in the hospital when we could only FaceTime and the month that you had to visit me at the apartment has all worked. Thank you for helping me get to this great day…”
Isn’t that wonderful? Let’s skip ahead for a reality check. David wrote:
I will learn more about next steps when I go to Moffitt for the consultation on Wednesday. I look forward to that session. It will be the first time I ever walked into Moffitt with nothing but good news on my mind. What a change! I am hoping for an immediate cessation of the weekly chemo treatments.
Longer term, 15% of Myeloma patients who make it through a donor transplant reach and hold remission for five years. Those that do usually never have the cancer return in a meaningful way.
For once, I am looking at the glass being 15% full and not 85% empty. And the fact that transplants cause the risks of secondary cancers of different types to rise is just a footnote I now choose to not read…
Reality check? I write these posts for a number of reasons: inspiration (I’m uplifted by David’s news, aren’t you?) and human interest. But primarily to help fellow patients make good choices by knowing what to expect.
So here goes: “I am hoping for an immediate cessation of the weekly chemo treatments.”
This could happen. Most likely not. Let’s face it. It takes a lot of guts (by patients and doctors) to stop using something that worked; cost and side effects or not. That’s one reason that I’ve been on extended maintenance for most of my 8+ years.
Many Mayo Clinic docs might recommend stopping maintenance therapy at this point. Moffitt docs? They tend to follow medical standard of care. These days extended maintenance has become the standard of care when treating myeloma.
Two caveats: I’m not a doctor. Everyone remembers that, right? And while I know a lot about myeloma and auto stem cell transplants, I’m know just enough to be dangerous when it comes to allos. So I’m unsure how the use of extended maintenance applies to an allo recipient. This is uncharted territory.
Which brings me to the second point:
Longer term, 15% of Myeloma patients who make it through a donor transplant reach and hold remission for five years. Those that do usually never have the cancer return in a meaningful way…
Do I have a lot to say about this stat! This is complicated stuff with too many variables. Some of the news is good, some leaves patients and their doctors facing open ended questions with no clear answers. I’m going to spend some extra time crafting my comments; I’ll post about it tomorrow.
In the meantime, way to go, David!
Feel good and keep smiling! Pat