If you are following along, this past week my bone marrow transplant was cancelled, or some would say put on hold to see if an alternative therapy can bring down my lymphoma to a remission level so low that we can try again.

The week has been emotionally tough and we are hanging in there. My liver is healing from the toxic effects of the last drug I was taking. We have been informed by Lilly Oncology that they will make the drug Pirtobrutinib (LOXO-305) available to me once all the I’s have been dotted and the T’s crossed. We do not know when that will be.

This week I will have an IV infusion of a medication I have been given since July, Obinutuzumab. The hope is to keep my enlarging lymph nodes in check until Pirtobrutinib arrives. I have an appointment with my Oncologist on Tuesday and expect some kind of update, one way or another, regarding the schedule and as a result when we may be returning to Sacramento.

A friend of mine sent me an article I want to share. Written by Aakash Desai,MD, MPH Division of Medical Oncology, MayoClinic, Rochester, Minnesota, and published online this past October 6, 2022 in the journal of JAMA Oncology, it tells the story of how analogous treating cancer is to playing a game of chess. We found it very close to the way many of decisions for me have been made. The article is titled and you can read it by clicking on the title: “Avoiding Checkmate-Playing Chess with Cancer.”

We have appreciated all the caring we have felt this past week.

Larry and Sharon

For the last 12-years I have been living on a razor’s edge – a balancing act between leukemia treatments, remissions, relapses, hope and despair. Keeping on the “edge” requires strength and support. We try so hard not to fall on the wrong side.

Since this past February 2022, I have been teetering from side to side. My CLL/SLL had required a second CAR T clinical trial. When that failed, I began several months of a hopeful treatment. Albeit with a drug with so many known toxic side effects, that this past September, the FDA pulled the medication from the market.

Along the way I have undergone biopsies of my liver, lymph nodes, kidney, and multiple bone marrow incursions. Not to mention multiple PET, CT scans, pints of blood testing and relocating away from our home in Sacramento.

We believed we had come to the point where a bone marrow transplant could provide a cure. Everything seemed to be in line. Lymphoma meds working – check. A 100% bone marrow match from my brother – check. Relocating to Seattle – check.

And then an ambush. On my initial appointment at the Fred Hutch, it was found that the chemo drug I was taking had caused liver toxicity, akin to a person whose liver was sick from too much alcohol, or hepatitis. I had neither of those, thank G-d. However, for my liver to heal, I was required to stop my chemo drug. That part of the plan is working. My liver is healing, now 2-weeks off the drug, although not yet back to normal.

However, either because the medication was toxic, or the fact that I had to stop pounding my lymphoma into submission, or maybe a combination of both, this past Friday I was evaluated with full body PET and CT scans. After waiting for four excruciating stressful days, the painful diagnosis was made that my lymphoma was no longer in remission.

Once again, I have fallen off that thin razor’s edge and the curative bone marrow transplant I was prepped to receive has been cancelled. At this juncture, the transplant would not have killed the cancer, although the side effects from the transplant were likely to kill me, not a risk anybody was prepared to take.

It would be an understatement to say that Sharon and I are devastated, as is our family.

So you ask, what now? We do have a plan B, although it is going to take some creative work and some time. My physician is going to apply to Lilly Oncology for compassionate use of a drug called Pirtobrutinib (LOXO-305). This drug is similar to medications I have been treated with in the past. It is not yet FDA approved and is in clinical trials. Having said that, due to my falling off the razor’s edge too many times, I do not qualify for any of the ongoing trials. Here in Seattle, we will try to create a clinical trial of one. This requires the company, Fred Hutch, and the FDA all to approve. We hope to gain that approval within a couple of weeks and begin the therapy.

In that case, we hope to move back to our home in Sacramento by early November and I will need to make monthly visits to Seattle to pick up the medication.

There is no guarantee that this will work. There is a glimmer of hope that within 4-6 months, this treatment will place me into a complete remission, meaning all my lymphoma has melted away, and if so, we can then attempt the curative bone marrow transplant. If not, I do not want to speculate.

There are a lot of moving parts here. There are a lot of emotions. We have spent the last 3-years either in treatment and/or shielding from Covid. I am not suggesting my options are coming to an end, but we know we have pretty much exhausted all that is available. To enter additional, first in human, clinical trials away from our home is not something I am eager to engage. Fingers crossed that the powers to be see me as a compassionate human being and allow one more big swing of the bat.

We so value your support, love, and prayers and will provide updates when we have something to share.

Larry and Sharon

When we think of lotteries, I believe most of us think of the big money, as in Powerball or Mega Millions. I admit that from time to time I do contribute to the lottery tax when the pots of money are enormous. I have never won.  Having said that, in my life I do believe I have won the lottery on three occasions, and although these are not monetary, they are monumental.

Occasion number one was the day I met Sharon, now 51 years ago. I did not know it on that day, June 17, 1971, how great the rewards would be – huge beyond belief. Like an annuity payout, they continue to this day including the dividends of wonderful children and grandchildren.

Occasion number two was February 2, 1972. That was the day my fate regarding the Vietnam war was to be sealed. Perhaps it is only us baby boomers that remember there was a mandatory draft for that war. And as I turned 18 years old, the draft updated its rules of engagement so that there were no longer any student deferments. I was a college freshman and that offered no safety net. Along with my dormitory mates, my family, and Sharon we held our collective breaths as the ping pong balls bounced. A number of 96 or higher would be safe. Below that, off to the war.

That day, I won what might have been a life changing lottery as my number was 226. There is no monetary value to be placed on that number, although again the payout has been enormous. In my heart, I know I would have been a changed man, as most are after going to war.

On January 8, 2010, I did not win the lottery. Honestly, it was a personal loss as I was officially diagnosed with Chronic Lymphocytic Leukemia (CLL) and Small Cell Lymphocytic Lymphoma (SLL). Based on initial testing, my prognosis was poor. I was given an 8-year survival. Now 12-years later my story is well known to you and has publicly been written about. Over the years, I have been treated and relapsed on multiple occasions. I have received just about every approved treatment and participated in multiple clinical trials, including new oral medications, and two different CAR T immunologic therapies.

Having relapsed again this past June, I am being offered a most promising treatment, albeit one of the most traumatic, an allogeneic Bone Marrow Transplant. This means totally wiping out my bone marrow and accepting a transplant from a donor whose cells would be necessary for me to continue to live. Although we have been told the success rate of a cure is 50%, it is hard to sugar coat this as we have just been informed the mortality may be 5% in the first month after the procedure and up to 20% through the recovery. I have very little alternative and needed to locate a donor.

Here is where I won the lottery for the third time as my younger brother Dave is a 100% match! He has agreed to join Dr Larry’s Team and donate his bone marrow cells to save my life.

What monetary value do we place on a life? I certainly think more than the multi-million dollar amounts from the state lotteries. And if David holds my winning lottery ticket all I can say is the value is priceless.

The process is very intense and will mandate that Sharon and I relocate temporarily to Seattle for treatment at the world renown Fred Hutch Cancer Center. We will arrive there on Tuesday, September 27 for at least a 4-month stay. The first 3-4 weeks is preparation, followed by the infusion of David’s donor cells and then 100 days of support and observation.

David will go through the process of preparing his bone marrow to produce the cells and their collection in his hometown of Chicago. The cells will be flown to Seattle, and after preparing me with several days of chemotherapy and total body radiation, the infusion will be done.

I do hope to win life’s lottery at least one more time, when G-d willing we are informed the transplant worked and I am free of CLL/SLL.

Thank you for your continued support and caring.

Sincerely,

Larry and Sharon