Update 2023-0701

Closer to Remission

IT’S JULY!!! Is anyone else feeling that 2023 is moving incredibly fast?

Yesterday we met with Andrew Cowan, my Myeloma specialist at Hutch. The news from the recent tests was good … in fact, in medical terms it is called a Very Good Partial Response (VGPR).

• Blood tests showed the myeloma protein spike dropped from .9 in January to .1 now.

• Bone marrow biopsy tests show the amount of plasma cells in my marrow (aka cancer) reduced to 0.01%; almost nothing.

• PET/CT scan shows no active disease.

Those are hugely great numbers! They put us in a position to consider what’s next. We discussed treatment options with Andrew and it became obvious that there is no right or wrong answer.

Additional Treatment/Maintenance Treatment

One path is to continue treatment with multiple cancer drugs to further suppress the cancer cells, eventually using lower doses of medications to keep the cancer under control. This would go on for an indefinite period of time. (Remember, this is a manageable illness, not a curable one.) One of those drugs is daratumumab and that drug has its own set of issues. Another drug typically included and expected in this scenario is the steroid dexamethasone. That is not a user-friendly drug; not easy to have as a regular part of one’s life. The side-effects of treatment so far, including pain and fatigue, have been fairly difficult for me and for Jackie. It’s not clear what the side-effect impact would be on this path.

Autologous Stem Cell Transplant

The other path, an autologous (my own cells) stem cell transplant (ASCT), in combination with high-dose chemotherapy, is a treatment option that offers a chance for a longer, deeper remission. The chemotherapy attacks all the blood cells in the bone marrow — not just the multiple myeloma cells — and gives the body a new batch of healthy cells. It is a more gnarly process up front with lots of difficult side-effects including pain, fatigue, nausea, GI issues, hair loss (it will come back), and short term loss of immunity requiring a period of isolation and hypervigilance about not getting an infection from people or food. What would be a nothing for you, could take me down until the replaced stem cells engraft and my body starts to rebuild immunity. Once I get to the other side, a successful ASCT, while it won’t make me cancer-free, it could give me the best delay in the progression, or relapse, of my cancer. Also, an ASCT would likely only require a single low dose cancer drug for maintenance over the long haul to also delay the inevitable relapse. This option feels a bit like “pay me now, or make regular weekly payments.”

Andrew told us that I am a good candidate for a stem cell transplant. With my recent side-effect complications of pulmonary embolism, pneumonia, and septic shock, we’ll take extra steps to keep me safe during the treatment, including the use of prophylactic antibiotics. While this choice is definitely the “E ride” of the choices, Andrew said the mortality rate is 1-2% and his rate is 0%. (Quick! Everybody knock on wood!)

Another Possibility on the Horizon

Advances are being made in the management of Myeloma every day. Some even whisper the possibility of “cure.” A promising treatment is something called CAR T-Cell Therapy. It involves removing some the a patient’s own T-cells, genetically modifying the cells in a lab to make them attack multiple myeloma cells using a specific genetic target, and then injecting the modified cells back in the patient’s body. This treatment has been very successful and has fewer side-effects. We know a couple of people who’ve had this treatment and are doing quite well. This is a new treatment, the T cell modification labs have limited facilities, and the FDA has only approved CAR T-cell therapy for multiple myeloma that has relapsed after at least four prior treatments. This makes it not a current option for me. There is a move under foot to get the treatment approved for newly diagnosed myeloma, but it is uncertain how soon that may happen. Waiting is not an option.

Saying YES to the ASCT

Jackie and I have had several conversation together and with others and we are inclined to pursue ASCT.

But hold on there a minute!

Before we can start that treatment, there are many hoops to jump through. It’s not a sure thing. In addition to the tests I’ve just had to determine how well the treatment has been working, there will now be several tests and examinations to assess my general level of health which may include an electrocardiogram (ECG), an echocardiogram, X-ray and/or CT scans to check the condition of organs such as the lungs and liver, colonoscopy, blood tests to assess how well the liver and kidneys are working, a COVID-19 test and maybe other infectious disease tests, and a meeting with the transplant care team for a final determination of my suitability for ASCT.

Back at the Gates of Limbo

So while we have come to our decision, that decision is dependent on many factors. My job for the next few weeks is to show up and do what is needed, keep getting stronger with physical therapy and good nutrition, and await the determination of the transplant team.

Getting Better Every Day

I would be remiss if I did not tell you how much better I am feeling every day. Sheesh. I should be. Look at those awesome numbers at the top of this post! As I write, it’s been seven weeks since I’ve had any cancer drugs. The recovery is impressive. I still have low back and leg pain, the remnants of the deconditioning that happened with my sojourn in the ICU, and pneumonia. Even with all that, I’m doing terrific. I’ve been able to participate in so many home tasks and even a bit of socializing.

As we returned from Jonathan’s and Rachel’s wedding last week, we met Ina at the Portland Airport and drove home with her to enjoy a week of “well mom” time. It was serendipitous that the timing made it possible for Ina to join us in person for the important “treatment options” meeting with Andrew. After that, we met up with friends Dave and Joe in Seattle for a celebration dinner at Serafina. We celebrated the love between friends and family and celebrated Jackie and me being together for 15 years. Today Ina headed home to her wonderful husband, Mike. In two days Sterling arrives for her first visit to our home. We are ecstatic!

Each time family and friends are here, our home gets a little more precious. The good times, the loving times, become embedded in the walls and the echoes of joy and love linger. All of this gives Jackie and me the resilience to soldier on with our current challenges.

The Most Beautiful Sound

I like ending these update on an upswing. This one is of a musical variety. It’s called “The Most Beautiful Sound” and is the captured sound of cancer cells being destroyed.

Listen Here.

My friend David Moloney put me onto this. He works for a company involved in working with folks at Harvard who isolated cancer cells at the precise moment of cellular death. They used stimulated Ramen Scattering — laser beams of different colors projected onto the cancer cells — to capture their molecular vibrations The data was translated into high fidelity sounds.

I was so excited to hear these sounds. They fit right alongside the sensation I have had in the days right after infusions when it seems like I feel bits moving about in the middle of my bones. It is painful when it happens, but it only lasts about 10 seconds per body movement. I focus on the sensation as I countdown the seconds and focus on the cancer being like pebbles in a rain stick shifting from one end to the other, dispersing and carrying the cancer away. Music.

Wow. Just wow!!!