Dental Health

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It is a hidden fact that good dental health is essential to avoid side effects from a bone marrow transplant. Reason being is that a carrie (cavity) contains bacteria. If the immune system is suppressed these hidden treasures may be released and cause much harm.

Knowing this, about 6-weeks prior to arriving here I went to my dentist and received a new crown and fixed an old filling.

Included in my prep workup is visits to the oral health clinic. Lo and behold, yesterday they found a subtle new cavity leaking out from one of my old fillings. Without fixing this the transplant could not proceed.

So this morning I paid (literally had to pay) a visit to a recommended local dentist who was very kind and repaired the tooth. One less problem to have to worry about.

When I was a medical student in Chicago at Cook County Hospital in the mid 70’s, one day I had to have my required annual screening for tuberculosis. I came up positive and was treated for just under a year with an antibiotic against TB. Again, another hiding infection risk for a transplant.

Good news today is the specialized test to see if I had any TB lurking within me was negative. Check that box off as well.

As Arlo Guthrie sang in “Alice’s Restaurant” they are leaving no parts of me untouched.

I had the afternoon off today and Sharon and I took a walk around a place in Seattle called Greenlake. It was beautiful and peaceful.

Arrival

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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 25th 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 31st. 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

Try Try Again

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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

A thread weaves its way to a goal

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Sharon and I hope you are well in this New Year of 2023. In Sacramento, we have survived a series of severe weather-related storms knocking down scores of trees and causing widespread power outages. For the first 10-days of January we were without power for five of them. We have resided in our Land Park home for 40-years and never experienced anything like this.

I want to share my medical update with you. I continue on my clinical trial of one, now in my third cycle of the medication, Pirtobrutinib. Just after Christmas I had my follow up at the Fred Hutch Cancer Center. This included blood testing and CT scans. The blood tests were good showing the treatment was suppressing my white blood cell production within my bone marrow.

The scans were encouraging. The enlarged lymph nodes in my neck are no longer seen. Honestly, we are not sure if it is a result of the medication or the radiation treatment I received to my neck this past October. At any rate, a good sign. The cancer lymphoma in my liver and kidney are smaller by millimeters in size. As an example, if one of these was 3cm in size this past October, they are now listed as 2.7cm. This does not sound like much, however, in 2-months’ time the trend is positive.

My next set of scans will be in March and from that we will have two points-in-time of response to therapy. Given those results, we hope to extrapolate when, and if, these lesions will resolve. The option for a bone marrow transplant is still on the table, pending progress with this current treatment.

We who have chronic illnesses grab onto any thread of hope. At times the threads weave into a lifesaving rope. That is our goal.

Larry and Sharon

Larry’s Update for December 2022 – So Far So Good

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Hoping you are enjoying a pleasant holiday season. Sharon and I are home in Sacramento after a trying month spent in Seattle at the Fred Hutch Cancer Center. My anticipated bone marrow transplant was cancelled, and we waited with bated breath for approval of a compassionate use medication, Pirtobrutinib, which gratefully was granted.

I returned to Seattle this past week and received encouraging news. My Chronic Lymphocytic Leukemia seems to be in control as measured by my blood counts. My lymphoma also seems to be responding as the bumps in my neck have resolved. What is yet to be known is how the masses in my liver and kidney are faring. I will have a CT scan after Christmas as the first trending indicator of my condition. We were advised that if bone marrow transplant for a cure is possible, the procedure will not be done until I am in total remission and at the earliest this coming Spring or early Summer. On top of that we need to continue living in a socially distanced world, doing our best to avoid Covid.

I have been living with the diagnosis of leukemia now for 13 years, perhaps longer if I carefully go back and review some scans and tests that I had done in 2007. My prognosis and life expectancy when I was diagnosed in January 2010 was 8-years. How then, have I beaten those odds.

Simply stated, my belief is that investment in research for blood cancer treatments by the Leukemia & Lymphoma Society has kept me alive. To date, they have provided research funding of over $1.2 billion.

In my case, every treatment I have received has, in some way, been funded by LLS, including my current medication that is in clinical trials.

Through Dr Larry’s team, we have raised and contributed over $900,000. These funds are instrumental in extending and saving lives of blood cancer patients and others as well. Many treatments first approved for blood cancers have now also been found to be effective in other cancers, arthritis, and MS to name a few.

Since my diagnosis, Sharon and I have been fortunate to have witnessed both our children’s marriages, and the birth of four grandchildren. Who knows what lies ahead. As time goes on, I begin to imagine the witnessing of additional life events.

I don’t know why it is that within many movies, TV shows, or in streaming entertainment, when they need a story arc that includes cancer, it is often leukemia or a blood cancer. I suspect the writer’s perception is that we all recognize this as a tragedy.  

We have truly appreciated your continued support and once again we are asking for your help – yes financially. Please consider a donation to our team, dedicated toward cures for blood cancer by clicking here.

Wishing you all the best,

Larry and Sharon

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