The University of Cancer, Part 4

Love Potion #10-IVIG

Multiple myeloma is a chronic incurable disease. When I was diagnosed in 2007, the prognosis was three to five years. Little more than a decade later, due to advances in research, the statistics have improved. Some patients persist upwards of ten years. I fall into that category: one of the lucky ones.

Chronic means it doesn’t go away. You either treat the disease or risk having it run amok. The cancer subsides with treatment, but one drags around a significant baggage of side effects. 

MM is a nimble adversary. At first, there are plenty of ways to fight back. But each treatment has a finite period of effectiveness, therefore, the incurable tag. That’s how you manage multiple myeloma: you just kick cans down the road until you run out of cans …

I am an easy patient, passive as a cloud. I don’t demand or complain. I accept the discomforts: the teeter-totter of steroids, the malaise associated with most chemotherapy, and the many, many needle sticks.

Decisions, Decisions

For sixteen months, my last regimen consisted of a three drug combo that balanced disease control with side effects. It necessitated weekly visits to oncology for injections or infusions but I felt good … well, goodish. Last summer, the stability waned and toxicity from two of the drugs finally exceeded their benefits. I still had options. Nothing of what remained, however, offered a long term solution.

Myelomiacs, if they are fortunate, eventually reach this point. What, then, is the goal? They can move along and exhaust the options. Or, they can consider a clinical trial and treatments that have yet to be approved. 

Decisions, decisions.

The most promising trials revolve around a groundbreaking new “living drug.” It’s called Chimeric Antigen Receptor Therapy or CAR-T. The technique involves gathering T cells (a type of immune cell) from the cancer patient’s blood, engineering them in a lab so they will recognize cancer cells as an “enemy,” then reintroducing these weaponized T cells to the patient’s body.

The “Hutch”

Nationally, there are a dozen or more clinical trials of CAR-T aimed specifically at multiple myeloma patients. Last July, my wife and I consulted with a trial administrator in Seattle.

The consensus of opinion and early trial results affirm CAR-T as a viable treatment. Nonetheless, science is a process made whole by both success and failure. There are risks. Questions remain about the optimal dosage and durability of the methodology. The time commitment averages 30-60 days away from home, more if complications occur. There is no guarantee of admission or success. 

Still, hundreds seem willing to participate. For some, the trial might be a last ditch effort to buy more time. Others may have young children and hope to pre-empt the many temporary fixes with a single extraordinary treatment. 

My point of no return is not imminent. My children are grown and comfortable in their own lives. And, with the can currently being kicked down the road, I am seeing a bit of a bounce back from last summer’s decline.

Zero is normal. The trend has improved since mid-summer decline.

My treatment philosophy has always been that “less is more.” Yet hope tempts one to manipulate logic. I want to believe the CAR-T product is less than the more of doing the same thing with different drugs from the FDA’s medicine cabinet. Such is the allure of hype.

Veterans of this disease face a choice: to explore, or not, the outer edge of treatment modalities via a clinical trial. Scientific research extended the life span of an entire generation of MMers. The blood of participating volunteers fueled that improvement.

Is there more to come?

CAR-T science is beautiful, a source of wonder. To genetically modify one’s immune system is unprecedented. Each recruit into these trials marches to a drum beat of hope and an echo of doubt. Their leap of faith may seem prudent given the slow pace of the regulatory process. Certainly, the wiles of multiple myeloma won’t wait. And, though disease control may not be refined, perhaps some can capture the future.


Read all about it in The Drill.

9 thoughts on “The University of Cancer, Part 4

  1. It’s never not a struggle between possibility and outcome. Even 11 years our for me, latent radiation damage pops up like whack-a-mole. Some you can knock back down, some you just have to walk around. I hope that the clinical trial is a viable option for you and gains you the years we all want. Thank you for your good words and courage!
    – Jeff

    Liked by 1 person

  2. Your struggle sounds a lot like ours! Hubby’s Kyprolis just stopped working after 2 years and now we’re trying Darzalex. He just had his first treatment of that drug. He’s going on 7 years of this fight. Here’s hoping! Keep us posted on your latest treatment. I always enjoy your posts.

    Liked by 1 person

  3. You never cease to amaze me!!! I hope you and Mar and the boys ++ have a wonderful holiday. Hugs to you and the family! It was great to see you in October. Take care…

    Liked by 1 person

  4. Your courage, strength, humor, faith, common sense, and positive attitude are inspirational. Thank you for your honesty and for sharing your journey with us. Happy Holidays to you and your family.
    ps: whatever you decide to do about the clinical trial will be the right choice. trust your gut!


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