Sharon and I arrived in Seattle a week ago to begin the process of preparing for my bone marrow transplant treatment. So far so good. Initial lab work (25 tubes of blood taken) was normal. PET scan shows that I continue to be in full remission from my leukemia. The countdown has begun.

The plan is for more testing over the next 10-days including blood testing, pulmonary function testing, bone marrow biopsies, many consultations – dental, nutrition, social work, Infectious disease and pulmonary specialists etc.

Assuming no red flags are raised the fun begins on Thursday the 25^th of May when a central line port will be inserted into my chest. The following five days will consist of 4-days of conditioning chemotherapy and 1-day of total body radiation.

The transplant infusion (referred to as “Day Zero”) of my brother’s donor cells will take place on the 31^st. I will be hospitalized 3-days after the transplant, or sooner depending on side effects from chemo and will be an inpatient for 2-3 weeks.

It goes without saying that we are anxious. At Fred Hutch there is a team approach with rotating attending physicians. As we were talking with our current attending, I asked her not to sugar coat the risks and rewards of this transplant. We were dismayed when she told us that based on my history and previous treatments, the side effects and mortality are probably higher than what we were previously told, and the odds of a total cure are most likely less than we had hoped.

Having said that, this is where the rubber meets the road as I am running out of options. The compassionate medication that is currently working is predicted to lose its effectiveness within 6-12 months from now. If that would occur the option of a transplant would be gone, and we would metaphorically be grasping at straws. Our perspective is that we are all in. There is a proverb to not look a gift horse in the mouth. The gift is priceless – a perfect bone marrow match from my brother and a chance for a cure.

From today going forward, I will do my best in posting daily updates to this blog Please check here for updates as I will not be sending email updates. Feel free to email Sharon or I if you have questions, thoughts, or just want to find a time to chat.

We anticipate residing in Seattle through September 30. We hope the summer will treat you well and so very much appreciate your caring and support.

Sincerely,

Larry and Sharon

The saying goes – If at first you don’t succeed at try, try again. This is fortunately the position we find ourselves in.

Since the end of October, I have been treated with a yet to be FDA approved drug, Pirtobrutinib, for my leukemia/lymphoma (CLL/SLL). This has been offered to me on a compassionate use basis as a clinical trial of one.

I returned to the Fred Hutch Cancer Center this week, and long story short, the medication has done its trick in a stunning way. I am in complete/total remission. The lymphoma in my neck, liver, and kidney are nowhere to be seen.

I have again been given the option of treatment with a bone marrow transplant. In baseball terms, swinging for the fences. This is the try, try again part. My brother has lovingly agreed to be my donor. Sharon and I will be relocating to Seattle, with our tentative arrival date estimated in early May. If all goes as planned, we will live in the Pacific Northwest, blocks away from Fred Hutch through September.

As we learn more about the timing and particulars of this treatment, we will relaunch our blog so that there will be regular updates.

Sharon and I are processing this turn of events and not taking the decision for transplant lightly. The usual course of a bone marrow transplant could take a year of recovery. I have asked if I could just continue the current medication that has done so very well for me. The challenge is that it is expected this drug will lose its effectiveness in the next 12-18 months. Like falling off a cliff, once the drop begins there is no coming back. If I was to relapse again, the bone marrow option would be off the table, and just as important, there are no new promising treatments for CLL in the pipeline in the foreseeable future.

Although I know so many things can go wrong with this kind of treatment, I am a glass half full kind of guy. The world seems to be spinning off its axis a bit.   I feel like I have missed a lot being bubbled up against Covid as I am one of the few who are immunocompromised and can’t just live as if the pandemic is over. However, being in this fight to beat cancer for the long-term I want to see how our planet betters ourselves, and more importantly be with our family watching their growth, experiences, and successes.

As we glide into the Passover and Easter season, we wish for you only good things to fill your hearts with joy and fullness.

Sincerely,

Larry and Sharon

Yes, Sharon and I are home, and like comfort food, it felt so good to be here. We packed for a for 5-month stay in Seattle . We were there for just over 5-weeks. Amazing how much we need to unpack and it in itself may take us weeks.

The experience was eye opening in so many ways. Mostly emotional and also gave us insights into how some facets of healthcare work. It is so complicated. I would think there are some really smart people in the world who could organize our care in a better way.

I have now passed the 1-week mark regarding the new medication I am taking. So far so good. I am scheduled for some medical visits locally here in Sacramento and then I will have an appointment at Fred Hutch on Monday Nov 28 to get checked out and pick up my next month of medication.

Just prior to our departure from Seattle we took a trip to their Arboretum to check the fall colors. From our previous visits to Seattle, the turning of the trees seemed delayed, possibly by drought or warmer weather. At any rate, the colors were glorious.

Thanks again for your support, caring and prayers.

Stay safe.

Larry and Sharon

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