Monthly Archives: September 2022

Cold Water Splashed on my Face

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My visits at the Fred Hutch cancer center have begun. Two long days in the books. All seemed fine until we received my initial set of blood tests. They showed my liver is not happy. Meaning, it seems inflamed. For what reason we do not know. The working theory is that the medication I have been taking to keep my CLL in check has now become toxic to me. Therefore I have stopped that medication and will have daily blood tests to see if these abnormal liver tests will come back down to normal. The issue is that, given this abnormality the team here would not be able to proceed with my bone marrow transplant. The team is hopeful and are scheduling all my appointments and tests as a “go,” As I am tested over this weekend we hope to see some resolution. Suffice it to say, Sharon and I are already anxious and in the words of Rosanne Rosannadanna, it is always something.

We are enjoying the relatively balmy weather here in Seattle and have been able to take nice walks every day. It helps to take our minds off the obvious.

We hope you are well. More to come.

Larry and Sharon

Arrival

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Arrival day, Sept 27, 2022. A short uneventful flight from Sacramento to Seattle although a long day with very mixed emotions. Mostly anxiety.

Upon checking into our apartment that we will call home for the next 4-5 months, surveying the surroundings, it has some challenges and we will make do.

Tomorrow begins my medical visits and our journey.

Larry’s Update – Winning the Lottery

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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

Larry’s Update ……..try, try again

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July 12, 2022

I hope this email finds you doing well and enjoying summer. When I last wrote I had a theme of a glass half empty or half full. As the weeks and a couple of months have gone by, the glass has emptied a bit, and the most recent CAR T therapy has slipped in its effectiveness. Meaning, I have relapsed once again.

When we chose the recent CAR T treatment, we knew it would either be a hit out of the park or would declare very quickly that something else needs to be done. I have entered the something else phase.

In discussing the options with our team, Sharon and I have chosen to again try for the long ball. That would be a bone marrow transplant. This means I will need to find a donor who is willing to share their bone marrow with me. The search is on. Our team at the Fred Hutch is masterful in this treatment and they are guiding the way.

There are two steps to success. The first is to get me into remission. Meaning, get rid of the lymphoma masses primarily in my liver, my neck, and a few other locations. I will be treated in Sacramento with a combination of therapies. A twice daily strong oral medication, Duvelisib, which I began this past weekend, combined with a weekly infusion of Obinutuzumab which will begin this week.

Simultaneously the team at Fred Hutch is searching for a donor for me. Once they find a match, assuming the local treatment is working, Sharon and I will relocate to Seattle once again for 3-months or more. This entire process from start to finish could take up to a year.

There is a classic line from Spiderman movies that says, “with great power comes great responsibility.” This treatment option reminds me of that, as with this approach there are great risks and great rewards. We are hoping for the reward of a cure, living many years cancer free.

This decision is not made lightly. The deeper I enter treatments like this, the more my life and its meaning is on my mind. What have I done that has had impact in the last 68 years? I believe I have made a difference in four ways, through my medical practice, my health IT experience, my work with the Leukemia & Lymphoma Society, and most of all through our children. In each step of the way I have been supported by my partner, Sharon.

What else can I do in the next several years that will make my life’s experiences even more worthy? I so very much want to see the legacy of our children and grandchildren. I want to be able to visit with them outside of my treatments. It is so hard to camouflage what I am going through. The young ones can see right through it. I so want to change this dynamic.

Finding a donor is difficult. A perfect match is the ideal. At the moment I am told there are some donors for me who match 90%. Adding your information to the national donor registry is easy. If you are interested in learning more about what is the process of being a donor, you can visit the web site https://bethematch.org/. It is very informative and will tell you what is involved. If not for me, then for somebody else in the future.

I am also so very proud of our Dr Larry’s Team for Blood Cancer Research fundraising. With your help, this month we will be donating $100,000 to the Leukemia & Lymphoma Society in support of a research grant based at MD Anderson in Houston, Texas, to look at a unique triple combination of medications for Chronic Lymphocytic Leukemia patients for their initial treatments. The goal of this is to achieve long lasting remissions for these patients so that they do not face the challenges that I have endured over the last 12 years. Our fund continues to be open and accepting donations. Any amount is helpful. Click here for the link to contribute.

Sharon and I cannot thank you enough for your continuing support and caring.

Our world continues to have its challenges. Stay well and stay safe.

Sincerely,

Larry and Sharon

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