In Chapters from my Autobiography (published in the North American Review in 1907) Mark Twain popularized the now ubiquitous saying “[t]here are three kinds of lies: lies, damned lies, and statistics.” Interestingly, although Twain attributed the remark to the British prime minister Benjamin Disraeli, the phrase is not found in any of Disraeli’s works. In fact, the earliest known examples can be found only after his death. Due, in part, to the uncertainty surrounding its origins, the quote is often attributed to Twain himself.

Editor’s Note:  Disraeli is often cited as the first and only Jewish prime minister of Britain.  This, however, is somewhat misleading. While Disraeli has a Jewish lineage, his father left Judaism after a dispute with his synagogue. As a result, Benjamin became an Anglican at the age of 12.  He later went on to play a central role in the creation of the modern Conservative Party and was rewarded by being named by the crown as the 1st Earl of Beaconsfield, KG, PC, DL, JP, FRS. Nevertheless, in the spirit of Dave Chappelle’s racial draft, we’ll claim him.

As for “Twain’s” famous statement, it is typically used to cast doubt on particular statistics that are used to prove an opponent's point.  This conclusion is more readily revealed by the entire quote, which begins with the observation: “Figures often beguile me," Twain wrote, "particularly when I have the arranging of them myself….”  In context, it is clear that Twain was highlighting how statistics are often manipulated or misrepresented to promote dubious arguments.

When I think about my continually evolving prognosis (i.e., the probable course and outcome of my particular variant of AML -- including the chances of recovery), I am typically required to do so in statistical terms. For example, in November 2020, when I was originally diagnosed with a blood disorder (for those keeping score, the relatively benign Essential Thrombocythemia), I was informed that the chances of my condition progressing to AML (a generally incurable and fatal form of blood cancer) were less than 10%.    

Pretty good odds.  The statistics appeared to augur a fairly favorable outcome. For example, a Mayo Clinic study found a median survival time for ET of 18.9 years – with survival in the first decade of disease for ET patients similar to that of the control population (risk ratio of 0.72, 95% CI 0.50-0.99).  In other words, the 10-year survival rate for ET was not significantly different from the age-matched general population.

This result is not overly surprising as the median age for ET patients is about 65 – a time when individuals are subject to a number of comorbidities, e.g., high blood pressure, "bad" cholesterol levels, diabetes, smoking (or secondhand smoke exposure), obesity, unhealthy diet, and lack of physical activity. All of these risk factors make an individual’s demise from stroke, heart attack, or other disease far more likely. In short, the statistics forecast that (given my general level of fitness) I was far more likely to die in a bike accident than from my blood cancer.

Well, there are lies, damn lies, and statistics.  Or, to put a more positive spin on it, things change.  Stuff happens.  By the end of 2022, it appeared that I had “beaten” the odds (although not in a good way).  Although I was told there was less than a 10% chance of my disease progressing to AML, this is exactly what was happening. In response, I arranged to have an allogeneic stem cell transplant in late-May/early-June 2023.

Although this is not a procedure for the faint of heart, I felt I had little choice.  After all, the damn statistics were clear.  Without treatment, the five-year survival rate for older patients with AML was only 5%. And, several studies indicated a median overall survival of only 4-6 months for elderly AML patients -- even after they received chemotherapy.

On the other hand, the most recent studies suggested that I had about a 50-60% chance of surviving more than two years if I underwent a stem cell transplant. So, while not providing a cure, the transplant would give me a 50-50 chance of causing my AML to go into remission for at least two year and potentially much longer.  It seemed like an easy choice.

Unfortunately, as I explained in prior posts, the transplant resulted in my going into remission for a bit less than six months. At that time, a bone marrow biopsy revealed: (1) the return of all six of my original pathogenic mutations; (2) the presence of two mutations (RUNX1 and ASXL1) that are particularly resistant to treatment); and (3) blasts comprising 37% of the cells in my bone marrow (anything over 20% is considered AML). When combined with the fact that I was not a particularly young patient (yes, I know that’s putting it mildly) and that I had previously had chemotherapy to treat blood cancer, this resulted in a diagnosis of acute secondary AML.

OK, so what’s the big deal?  Regular old AML versus acute secondary AML. After all, they’re both bad. Is one that much worse?  Well, yes.  There are often levels of badness. And, speaking frankly, acute secondary AML is pretty darn bad. [See, cartoon attached to this post]. The bottom line: patients with acute AML relapsing within 6 months of a stem cell transplant have a 3-year survival rate of only 4%.  Yikes.

As last related (see Post 52), in order to enlarge this paltry number, my medical team scheduled a series of Donor Lymphocyte Infusions (“DLIs”) – procedures that transfers healthy white blood cells (lymphocytes) from my original donor to my blood. It was hoped that these infusions of healthy lymphocytes would “reboot” my stem cell transplant and help my immune system rid itself of remaining cancerous blood and stem cells.

I’ve now had two out of a scheduled four DLIs. Unfortunately, these procedures have not been able to reboot my stem cell transplant. As revealed in a May 14, 2024 blood test, a post-transplant DNA sample isolated from the myeloid ("bone marrow" enriched fraction of peripheral blood contained 0% donor DNA.  In case you’re wondering, 0% is not good – as a successful stem cell transplant would normally result in 100% donor DNA, or at least close to it.

So, are the DLI’s doing any good?  Well, not in providing a cure or remission, but they may have in prolonging my life span.  In this regard, it is important to note that my latest blood test also showed that the post-transplant DNA sample isolated from the T-cell enriched fraction of peripheral blood contained approximately 92% donor DNA. You may ask, how can it be that the peripheral blood sample had 0% donor DNA while the T-cell sample contained 92%?

Well, the answer is simple, the myeloid sample was 0% as no donor stem cells remain engrafted in my bone marrow. Yet, the peripheral blood sample was 92% because my second DLI (which infused donor white blood cells containing donor DNA) occurred on April 25th. Hence, a lot of that DNA was still kicking around in my bloodstream as the regular life span of a T-cell in the peripheral blood is in the neighborhood of 5-6 months.  And, while they're still kicking around, the donor T-cells can hopefully attack my pathogenic mutations (after all T-cells are also known as “killer cells” for their efficacy in destroying virus infected cells and cancer).

So where does this all leave us (or, in particular, me)? Well, in order to sum this all up we’ve got to return to the subject of statistics – which in this case may – or may not – turn out to be closer to “damn lies.”  The statistics suggest that with the DLI’s and my ongoing chemotherapy, I may have as little as 10 or so months to live or as much as 24 months. Now putting statistics aside, the reality is that I may not even last 6 more months.  However, it’s also possible that despite the statistics, I may survive 3 or more years.  No one really knows and the doctors can only guess.

Why is my survival rate so uncertain?  Good question. In the next post, I’ll discuss this and the question of whether it’s worth getting a second stem cell transplant. Stay tuned.

Much love,

Phil

Postscript (typically abbreviated as P.S. and derived from the Latin "post scriptum" meaning "written after").  In case you’re wondering, life goes on and is generally very good.  Moose was down from Tahoe for a couple weeks and, among other things, helped us transform the Capitol from a party room to a maternity ward/guest suite.  Melissa arrived last week to begin her four-month maternity stay. Griff, Ane, and Klifftxo arrive on Thursday for a two-week visit, Matt and Renee (friends from NYC) arrive on Saturday for a quick SD vacation, and Gator returns from a spiritual odyssey in the Amazon the following Thursday.  As can be seen, the summer promises to be jam packed.  On the downside, both Liverpool and Arsenal once again lost out to the EPL cheaters-in-chief, Man City.