Has anyone read this book by Michael Sekeres? He profiles 3 patients and before I go looking for the book I'd like to know if any of the 3 has CML. Naturally, like all media it seems, the reviews just lump everything together as "leukemia" and I can't find out if the book has anything enlightening about CML.
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When Blood Breaks Down
Hi, Kat! Of course, I went straight to Amazon to check out the reviews. Only 100 but 74% gave it 5's. All of his patients in the book are amalgamations. He discusses breakthrough medications so I'm sure Gleevec is mentioned prominently. TBH, I doubt if there is anything in the book we haven't already heard about. Still, might be an interesting read. Darn you, another book to read! :) ~Pat
Edit - It was published in April of 2020. If you haven't read it, I recommend Emperor of All Maladies by Siddhartha Mukherjee. Now you've got me going...there are two YouTube interviews with the author: one from MIT Press Live and the other from Talks at Google. I've watched one and it has lead me to think this is a book worth reading, the historical perspective alone is interesting. I will shut up now.
Oh no, Pat, never shut up! Please! I loved Emperor of All Maladies, too. In addition to being informative, the guy is such a thinker and writer. And stylist. He's a five-tool player! I have so many books on my nightstand, I was just hoping I could maybe skip WBBD, but if it had a CML patient as one of its amalgamated portraits, I might go to B & N and check it out.
Kat, so I downloaded WBBD and one of the three patients does have CML. That's all I know so far. Dr. Sekeres has a chart in the book that among other things has the survival rate for the various leukemias. For CML the Five-Year Survival is shown as "70% (trend improving with use of TKIs)". For CLL the chart says 85%. What?! I mean that could be correct for CLL I guess but for CML? I had always heard the statistic at 95% or higher.
He does lambast Novartis for its continually rising price of Gleevec saying, "Having to pay for the resources necessary to bring a drug to market might explain some pricing inflation at first....doesn't hold much water a decade after the fact". Try 2+ decades!
Pat, yes, that 70% is not a nice number! Are we CMLers spoiled to think that? I think that must be inclusive of some factors we're not aware of in the population they've surveyed. I always thought that, after TKIs arrived on the scene, 5 yr survival was 95%. For that matter, Bryan Druker himself said 15 years ago that he didn't see any reason not to think that someone on Gleevec could live successfully with CML for 30 years. He'd probably amend that now to be even longer, with second generation (and third) TKIs available.
Thanks for doing the legwork to see if the author includes a CML portrait in the book - I guess I'll have to go get it and add it to the bedside pile!
Not sure if you have read it but there is a book specific to the history of our malady titled “The Philadelphia Chromosome”. It came out in 2014. The title reminds me of “The Andromeda Strain” from the 70’s. It’s an interesting read about the research over a few decades that eventually created Gleevec. It’s by Jessica Wapner. I thought I would throw that out to you guys. ….. You probably already know about it.
Kat, I remember reading about Dr. Druker saying that. Long ago and in a galaxy far, far, away (original LLS Community Forum) I think Trey indicated that BD was taking into account the "new" TKIs, at the time dasatinib and nilotinib, when he said most of us would be able to live a normal life span. By that we might transition through all of them to achieve that.
I learned at least one fascinating fact in that book. "When we were all at the developing fetus stage, none of us actually had a functional bone marrow. Instead, those bone marrow cells created red blood cells, white blood cells, and platelets from what’s called our reticuloendothelial system—the liver, spleen, and lymph nodes. Remarkably, in people with myeloproliferative disorders, the bone marrow cells somehow remember where they were born, even decades later, and return to those organs as safe havens when the disease worsens. Consequently, people with these disorders often have enlarged spleens, livers, or lymph nodes..." I thought that was very interesting!
Pojo - Yes, The Philadelphia Chromosome is a must-read for us! (And a re-read every decade maybe.) Fascinating, valuable book. Pat - I love the anthropomorphism of your quote! I can just see them, heading to the old homestead . . .
This is interesting what you wrote Pat, “… Consequently, people with these disorders often have enlarged spleens, livers, or lymph nodes...”. No matter how much I try for that elusive flat 6 pack stomach, or lose weight, or how low I go in my BMI, my belly always seems to stick out. Even in old super 8 movies of me when I was a toddler I can see my abdomen sticking out…. Maybe you’re onto something. I guess I will never achieve that Mick Jagger slender body that I long for no matter how hard I try.
OK, I've now read When Blood Breaks Down; Life Lessons from Leukemia, by Mikkael Sekeres, and it was a valuable read. The patient with the CML is even pregnant, for all those out there interested in this question. I didn't learn anything I didn't know before (except what Pat wrote about - that WAS news to me), but I have to say that it was riveting to read about the OTHER patients, the ones struggling with AML. It was humbling and made me realize we're all in this together. I'm ashamed to say that I had never even heard of Acute Promyelocytic Leukemia (APL). We truly are the lucky ones.