Phil’s Story

Site created on March 18, 2023

The short story (which many of you will believe is particularly apropos given my somewhat diminutive height): I've been diagnosed with a JAK2 Mutated Unclassified Myeloproliferative Neoplasm / Myelodysplastic syndrome (usually abbreviated as "U-MPN/MDS" and generally thought of as cancer of the blood and bone marrow).  The long story:  Well that's a bit more tricky and takes a fair bit of storytelling (spoiler alert: it does entail Marcia and I moving to Boston in a couple weeks so I can get a stem cell transplant).    

Before getting into the full story, however, I should note that I've been struggling for some time with the best way to notify all of our friends about this latest chapter in my life.  For example, what's the best way to keep in touch with all the wonderful people who have so enriched my life?  What's the best way for people to show support (in case you're wondering, I am referring to emotional support, not financial -- which is not necessary or desired).  What's the best way for me to let everyone know what's going on during this journey?  Well, you get the idea. 

At first, I thought a weekly email would be the perfect vehicle.  However, after a bit of thought, I concluded that no one needs another lengthy (c'mon, you all know me) weekly email that will just weigh down further their already overcrowded personal email accounts. So, I decided to author a blog that Marcia and I (and the kids) can update with the latest news to fill in those of our friends who are wondering why the heck I'm not presently traveling around the world riding my bike.  

Although it may come as a surprise to many of you, I was diagnosed quite some time ago with a pretty nasty - formerly fatal - disease (see above). Rather than make a big fuss about it and having it dominate my interaction with others, I've preferred to just enjoy living life and not let this diagnosis dominate my life -- at least until I received a more definitive prognosis.   As a result, I think it best to start my first official post at the beginning of the story (yes, believe it or not, I have not classified this as an official "post," but merely a brief introduction).  Thereafter, I'll bring everyone up to date in subsequent posts in which I'll fill in all the  relevant details (and many that are perhaps irrelevant -- yes, I've already admitted to being a tad prolix in my written expression). 

I've decided to put the blog on "Caring Bridge" - a nonprofit website that's specifically designed to allow patients to share their health journey and build a community that can be informative and, most importantly, supportive during difficult times.   Family members will then have the opportunity to send out notices to folks who they think might be interested in keeping in touch.  In this regard, please feel free to share the website with any other folks who might be interested in receiving news on this adventure or offering any words of hope, support, and encouragement.

Much love,

Phil

PS -- My goal right now is to be riding my bike in San Diego by 2024.  And, I'll give you all one final word of advice, I wouldn't bet against it! 

Newest Update

Journal entry by Phil Halpern

Unless everyone I encounter is a talented liar, I am forced to admit that I must look great.  At least that’s what I’m uniformly told by just about everyone who comes to visit.  Now, it’s likely that they’re really saying that I look great for someone who’s suffering from a particularly pernicious incurable disease (with common courtesy dictating that they leave out the last part).  This conclusion is reinforced by the fact that my “looks” didn’t generally warrant such positive remarks before my illness.

In any event, it’s nice to know that I don’t look like I’m sick.  Most of the time, I feel my being ill is just part of my life now, like being short or being a good athlete (ok, an acceptable athlete). After all, I much prefer to be discussing other matters (not dwelling on my infirmities) and just enjoying life. 

Nevertheless, these constant comments recall – at least in my mind – The Picture of Dorian Gray.  In this 1890 novel, Oscar Wilde tells the story of a young man (the eponymous Mr. Gray) who is given a portrait of himself that fully captures his immense beauty and vitality. Recognizing that his own beauty will fade, Dorian sells his soul to ensure that the picture, rather than himself, will age and fade. After making this deal, Dorian pursues a libertine life of hedonism and immorality. As promised in his devil’s bargain, Dorian stays young and beautiful, while his portrait ages and reflects all of his sins and his corrupted soul. Not being able to stand the horror now being depicted, Dorian tries to destroy the portrait, but in doing so, he kills himself. His body shriveling and decaying as the portrait again resumes its original state depicting him as a handsome young man.

I’m fairly sure that I don’t have a similar picture of myself stored in our attic (although Marcia wishes that I’d hide a particularly prized painting of me as a five-year-old wearing a powder blue suit that hangs in our dining room). In any event, when I examine my recent blood tests, I feel a bit like Dorian Gray did when staring at his aging portrait.  It’s not a pretty picture.  

When I last posted, I was about to undergo my first Donor Lymphocyte Infusion (“DLI”) – a procedure that transfers healthy white blood cells (lymphocytes) from my original donor to my blood. It was hoped that this infusion of healthy lymphocytes would “reboot” my stem cell transplant and help my immune system rid itself of remaining cancerous blood and stem cells.

Well, as luck would have it, the first DLI had no discernable effect whatsoever. It is possible that this was attributable mainly to the first DLI using only a small fraction of the donor’s white blood cells. The use of a small initial DLI was a necessary precaution taken to ensure that I did not have a strong adverse reaction to the donor’s white blood cells.

Editor’s Note: While I had previously received this donor’s white blood and stem cells without incident during the stem cell transplant procedure, I was also receiving powerful anti-rejection drugs at that time.  These drugs muted the negative effects of the donor’s cells to such a degree that I did not suffer any significant Graft v. Host Disease (“GvHD”).  On this go round, I would not be receiving any anti-rejection drugs.

A second (and much stronger) DLI is presently scheduled for April 25, 2024. Although there is some hope that this could have a positive effect (due to the increased amount of white blood cells) there is also some doubt based on my recent blood and bone marrow testing. At present (based on February 27, 2024 biopsy), my bone marrow now contains only 10% donor DNA. In other words, my old “mutated” DNA now makes up 90% of my stem cells.  It is clearly desirable if these percentages were reversed.

Equally discouraging, a March 28, 2024 DNA test of my blood (as opposed to my bone marrow) revealed approximately 1% donor DNA. Not optimal. On the positive side, the DNA sample isolated from the T-cell enriched fraction of peripheral blood contained approximately 93% donor DNA. As regular (and attentive) readers may recall, T-cells are a type of white blood cell that originate in the bone marrow and mature in the thymus gland. Significantly, one of the two main types of T-cells (Cytotoxic T-Cells) directly kill cancer cells by binding to them and inducing apoptosis (cell death). A desirable outcome in my case.

It needs to be stated, though, that the upcoming DLI will not provide a cure -- absent a miracle. And while miracles do occasionally occur when treating secondary AML, they sadly occur about as frequently as one could expect to win the lottery and far less likely than one could expect to be struck by lightning. On the other hand, with a little bit of luck, the DLI may possibly tamp down my leukemia sufficiently to allow me to reduce the amount of chemotherapy and significantly improve both the quality of my life as well as my longevity. Good things.

Editor’s Note: The odds of winning the Powerball jackpot are less than 1 in 300 million. The odds of being struck by lightning in one’s lifetime is about 1 in 15,000 – which is slightly more than the odds of sinking a hole in one. 

Over the last several months, my medical team has been actively engaged in balancing the frequency and strength of my chemo with my overall health. In my next post I’ll try and discuss both this difficult balancing act as well as any results from my second DLI.    
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