Reader stories can help us make difficult therapy decisions

As most of you know, I’ve been facing the toughest therapy decision of my eight year multiple myeloma journey.  But this week’s series of posts aren’t about me.  They are a culmination of what I’ve been working on for years: collecting patient testimonials and feedback that can help all of us make life extending, uber-informed decisions.

Through my Patient Snapshot series, we’ve followed a dozen stem cell transplant patient’s lives–both auto and allo–over the past three or four years.  I have also spotlighted a number of other patient’s struggle to live the best quality of life possible.

Starting today, we’re going to hear from a number of our past subjects.  Most are doing fine.  A few not so much.  Since I’m trying to decide whether to join an allo transplant study–or to undergo a safer, modified auto this summer–I’m going to be selfish and start with autologous (donor) transplant recipients first.

Revisiting our friends (I think of them all as “myeloma heroes”) battles only provides us with anecdotal evidence, I’m not convinced that this isn’t the best kind of data for late stage myeloma patients to sift through.  Since myeloma therapy is more art than science by the time someone has relapsed more than once–and the fact that most late stage patients can be considered high risk once they reach that point–why not use subjective input to help guide our decisions?  There are few comprehensive clinical studies to help.

I’m going to start with the most recent Patient Snapshots and work backward.  I’m sorry to report that our most oft followed myeloma transplant hero–family man Tom from Ohio–has never really gotten his bearings, years after his allogeneic transplant at Cleveland Clinic in the winter of 2013.

I have shared a record 26 installments featuring Tom over the years.  A young family man with a beautiful caring wife, Whitney, and a gaggle of kids, Tom’s myeloma simply wasn’t cooperating after five years of ineffective therapy.  So his doctors suggested a donor transplant.  Not a common fix, but one that at least held out hope to leave him myeloma free for an extended period of time.

The good news?  Tom’s myeloma is and has been kept under control; practically nonexistent since his allo.  The bad news?  Tom and his family have endured more complications than I would wish on my own worst enemy.

I should be more organized about how I keep in touch with Tom and others I’ve featured here at MMB over the years.  Instead, I email their families from time to time when I think about it–or a lot of them do the same to me.

This weekend I received distressing news from Whitney: Tom was in the ICU again.  Promising to get me a detailed update, she’s understandably been too busy to do that.  But I wanted to run her last two emails.  Remember, I don’t know the backstory here:

FullSizeRender-1Guess where we are again!? Ugh! Long two months. I’ll send you a full update soon. He’s on the upswing now, I hope. Hugs to you and Pattie.
Whitney

Pat- I still owe you a whole update but thought you’d want to know Tom was moved to the ICU in the middle of the night last night. He’s struggling to breathe. Fluid in his lungs. Rechecking heart here soon . A few extra prayers today please.

He’s awake! Getting some good oxygen. Lower lungs collapsing a bit. In good spirits though!

Say it ain’t so!  So sorry, Tom and Whitney!

Tens of thousands of readers have followed the Ohio family’s compelling story over the years.  There are touching and hopeful moments documented here.  More importantly for our purposes, most chapter also seem to include an unexpected medical setback.  Want to go back and catch up?  Here’s a couple links to help get you started:

Hope for a cure: Tom’s allo transplant journey (Part One)

 

Hope for a cure: Tom’s allo transplant journey (Part Four)

 

Hope for a cure: Tom’s allo transplant journey (Part Seven)

 

Hope for a cure: Tom’s allo transplant journey (Part Twenty Six)

 

That’s a big jump from Part Seven to Part Twenty Six, represents a lot of missing blood, sweat and tears.  Want to fill in the blanks?  Simply type, Hope for a cure: Tom’s allo transplant journey, into the long, black query bar, located in the upper right hand side of my homepage; they’ll all pop up.

Above I wrote, “most chapter also seem to include an unexpected medical setback.”  And that’s the thing.  Honestly, I’m getting tired of hearing advice like, “Try an auto (stem cell transplant using my own cells) and then an allo in a clinical trial later.” Like its no big deal.

Really?  NEWS FLASH: undergoing any form of stem cell transplant isn’t easy!  True, some patients “sail through” (their or their doctor’s words, not mine) things, feeling better in five or six weeks.  But I’ve heard from dozens of patients that complain that they’re still chronically fatigued, or have developed another significant complication, that keeps holding on months or even years following their autologous stem cell procedure; even longer for allo patients.

On their behalf–and others that have slogged through it all, only to have it not work like mine–I recoil at the suggestion that patients jump into something that may have such a long lasting effect on their lives.

Of course, both types of stem cell transplants work more often than they don’t; barely.

That’s my beef.  Give me a 67% probability that a second auto will keep my myeloma at bay for two or more years and I’ll be the first one to sign up!  But doctors can’t quote stats like that.  Most can’t quote any, other than to point out that someone who responded well to their first auto should do well a second time, and someone that didn’t won’t.

I’ll be honest.  Reading about complications associated with allo transplants are pushing me back toward the safer, lower expectations of a modified auto in Iowa City.  I’ll share details–and unsubstantiated probabilities–that I’ve been using to help me make a decision about what to do at the end of the week.

In the meantime, let’s focus on the myeloma heroes (warriors might be a better adjective) that we’ve gotten to know over the years.  Like Tom, David is a younger family man who recently underwent an allo in Tampa.  He’s faced far fewer complications than Tom, but his myeloma hasn’t responded as well.  Details tomorrow.

To me, the twenty or so patients we’ve followed together over the years through our Snapshot series are like family.  I want Tom and Whitney to know that they’re in our thoughts and prayers.  Hang in there, big guy!

Feel good and keep smiling!  Pat

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