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Statistics meaningless when we’re a clinical trial of one

Home/About Pat, RIP, Transplants/Statistics meaningless when we’re a clinical trial of one

Statistics meaningless when we’re a clinical trial of one

As often happens after I memorialize someone, I got several emails from others that recently lost their loved ones. One graciously thanked me for sharing my journey Friday, revealing that she had lost her husband after a short, six month struggle with multiple myeloma.

Six months! How difficult it must be to read about so many of us that are able to extend our lives for years; sometimes for decades. I’m hoping we don’t forget our fellow high risk patients–or those that face debilitating side effects that limit access to life extending therapies.

At a time that’s so hopeful–three new myeloma therapies have been FDA approved in the last six months–imagine what it’s like if nothing your doctor tries works.

A reminder why the statistics so many dismiss as outdated continue to hold true. Some get hit by aggressive and unresponsive myeloma. Others are diagnosed so late it skews the stats; some don’t receive appropriate treatment along the way.

Remember that most myeloma stats are medians not averages. So if the median life expectancy for an unlimited pool of myeloma patients is 44 months, 50% of us live longer; some a lot longer. All I ask is we don’t forget the half that don’t make four years.

Speaking of stats, a long time reader emailed me today about my decision to undergo a modified salvage tandem. Did I have any regrets?

I admitted that I have wondered if I  could have/should have skipped the second transplant. After all, the first was continuing to work even at the three month point.

Which brings me to related stats. Apparently tandems work best for patients that don’t respond well to the first try. This is the opposite of Dr. Tricot’s logic: to repeat things if the first one made progress.

At some point, late stage patients need to scream, “Stats be damned!” As we progress along our myeloma journey, we become a clinical trial of one. Those of us fortunate enough to be working with a specialist that we agree with need to let go and allow our doctors to do their jobs.

I’m hoping the second transplant puts me in a long lasting CR. Does that make it the right decision? So much discomfort, toxicity and cost. Guess it depends on how long we’re able to keep my multiple myeloma at bay. To me, anything over a year is a victory. But it would be great to squeeze out more time than that; it hasn’t been an easy road.

I seem to be fighting off my cold surprisingly well. I know I could backslide, but I slept well last night. I’m a bit run down today, but I feel like I’m getting back to normal; normal 40 days post transplant, that is. I’m weak but soldiering through. The weather is forecast to be unseasonably warm here this week. One more week to recover before ASH in Orlando. Better finish getting our Christmas lights up while it’s warm and sunny.

Feel good and keep smiling! Pat