My Cancer: Treatment, Evolution, Progression

Background:

As you all know (if you read Marked by Myeloma), I was seriously ill and diagnosed with Multiple Myeloma, a blood cancer deemed incurable but treatable, on April 29, 2023.  I began chemotherapy treatments on the newest chemotherapy protocol (DVR-D) on May 9 at Massachusetts General Hospital in Boston, a premier cancer treatment facility.  I responded well to the treatment, achieving remission after two months.

However, my Multiple Myeloma variant (Kappa Light Chain)[1] tends to be aggressive.  I was also diagnosed with an accompanying Amyloidosis resulting from malfunctioning “sticky” proteins, resulting in the chronic condition of congestive heart failure.  Thanks to the exceptional treatment and my generally positive health and fitness, I was able to enjoy a somewhat normal life despite the disease.  I continued weekly chemo visits and ongoing monitoring, and maintained  an active lifestyle and a carefully curated high-protein, low salt diet.  My wife and I were able to enjoy the outdoors and our visits with family and friends at our homes in both Woodstock NY and Edwards CO.

The DVR-D protocol includes Daratumumab (a monoclonal antibody), Bortezomib (a proteasome inhibitor), Revlimid (an immunomodulator), and Dexamethasone (a steroid).  These relatively new drugs usually afford patients up to 4 years of health before relapse.  In my case, I had to undergo a targeted radiation for two hot spots on the PET Scan[2] just 12 months out, and the protocol failed by 20 months.  I was switched to Carfilzomib (another proteasome inhibitor), Pomalidomide(immunomodulator) and Dexamethasone, which maintained but did not improve my cancer for 5 months.

In late April 2025 a PET Scan identified many new hot spots.  Rising kappa light chain markers confirmed the failure of this second chemotherapy regime.  My myeloma had “evolved around” the six drugs in just two years, leaving few good options.  Dr. Raje (head of the MM program at MGH) recommended with a high confidence  that I undergo CAR T-cell therapy, very recently approved for patients with refractory Multiple Myeloma whose chemotherapy had failed.  Despite my age and complications, she was confident this would be a successful treatment; however she cautioned there were also serious risks from side effects. We discussed the options and risks and Wenda and I made the choice to proceed with the ciltacell[3] CAR T-cell therapy option.

Chimeric[4] Antigen Receptor CAR T-cell Therapy

CAR T-cell therapy was first used in 2017 to treat refractory leukemia in children and young adults and first approved for refractory Multiple Myeloma in 2021.  The approval was  expanded in April 2024 to a second CAR T-cell option, and made available to a broader community of patients, including me.  CAR T-cell therapy genetically modifies the DNA of a patient’s own immune system T-cells to make antigen receptors targeted to identify a specific protein found on myeloma cells.  When successful, the patient’s own body takes over the work of destroying those cells.  The treatments have been very successful, and clinical practice has continued to improve in managing the side-effects, some of which can be severe.

On July 2, my T-cells were harvested:   For a period of hours, my blood was drawn from one arm and passed through a machine that separates the various types of blood cells and selects out the T cells.  The remaining cells and plasma were returned to my body in the other arm.  The collected cells were shipped to the Johnson&Johnson manufacturing facility that stored half the cells and put the remainder through the process that inserts the specified DNA into the chromosomes of the receiving cells.  While rare, the first manufacturing attempt failed, so the stored cells had to be used in a second attempt, which was successful.

I had continued with “bridging” chemotherapy treatments (Cytoxan, Bortezomib and Dexamethasone) in June and July.  In mid-August we moved to Boston and began the advance preparations including many labs, scans, and installation of a PICC (peripherally inserted cardiac catheter) line.  On August 23, I began 3 days of lymphodepleting chemotherapy to make space in my blood for the new cells to establish and reproduce.

On Thursday August 28, 2025, I was admitted to the Lunder Building of MGH, and my new cells were infused.

Lunder Floor 10

Floor 10 of the Lunder Building at MGH serves cancer patients undergoing CAR T-cell, stem cell and standard chemotherapy.  Some are very, very sick.  Others, like me, are much more fortunate.  Each is being treated by an incredible staff that is highly trained, thoroughly dedicated and deeply caring, from the physicians directing my care (Dr. Raje, Dr. Frigault, Dr. Dhawale, Dr. Puliafito), to the NP’S and other nurses, to the front desk, custodial and food service staff.  It felt as if the walls contain love – and in a sense they do, with posters of encouragement and fun, and brilliant messaging such as this on one of the designed wall boards (installed during COVID):

“Stop. Admire the strength you had for 12 hours. The kind words, gentle hands & intelligent thoughts that changed someone’s day, but just maybe someone’s life.”

I was given Room 1024.  I had a wall of floor to ceiling windows with an astounding view of the Boston skyline. The sunrise greeted me each morning around 6.  I walked the halls, eventually completing the “Lunder 10 Marathon” – 183 circuits (26.2 miles), sometimes accompanied by Wenda or my visiting brother.  We made friends, briefly, with staff and a few other patients, sharing stories, good will and gratitude as much as we could.  It was a moving experience – one I will never forget.

Side effects

Most CAR T-cell patients experience “Cytokine Release Syndrome”, an inflammatory response to the new T-cells expanding in the body, and mine arrived on Day 6.  My temperature began to rise, I had deep shivery chills, and I spiked a fever of 102.7 late in the evening.  This had been anticipated and within minutes an organized and controlled medical response began, including measures to reduce the fever, to monitor and prevent infection, to slow down the T-cell maturation, to reduce inflammation and to increase the neutrophil cells, all of which succeeded over the next few days.  I was also experiencing some “bone pain” as  result of the rapid proliferation of new cells within the bone marrow, a side effect that was easily treated (with dexamethasone and Allegra). Through this process, the communication was excellent – complete, timely, straightforward and delivered with great sensitivity.

We had also been warned of possible neurological inflammation, and I was given a simple “[5]ICE Score” test several times a day, asking questions about my name, location, objects and attention, ending with a request to write a sentence.  Counting backwards from 100 by tens was the trickiest question and my occasional use of poetry when writing a sentence was amusing, but I passed all tests 10 for 10.

On Day 11, I asked the medical team how I was doing relative to the measures of Myeloma activity and the course of the disease.  I was shocked to the learn that the Myeloma was gone, and my Kappa Light Chain markers were normal   I was in remission.  That piece of news continues to feel baffling.  Having been a cancer patient dealing with active disease progression for nearly two years, it is difficult to imagine an open-ended period where I am no longer a “patient with active cancer.”  I also asked the Team how long I can expect to be free of cancer, knowing that myeloma usually does return after a period of years.  With CAR  T-cell therapy, they answer is “we do not know.”  The treatment is 98% successful, and it is so new they have no sight line on any measures of “progression free survival”

With such great progress and good blood test results, the decision was made to complete weaning me from a final dose of dexamethasone and any remaining “protective” drugs, and to release me from the hospital on  September 11, two weeks after my admission.  It was poignant to depart from the secure cocoon and from the friends we had made, but it felt wonderful to be back out in the natural world.

Re-entry

Unfortunately, my recovery was marred 24 hours later by an unusual increase in body pain, which I initially thought to be from walking too far on that first day.  Into the evening, the pain continued to build in intensity. Our private night duty nurse Chisem consulted with the MGH nurses on Lunder 10 and was able to administer Tylenol and later Allegra, but these were ineffective. Unable to sleep, and increasingly thrashing and groaning with severe bone pain, we woke Wenda at about 3AM and they placed a call to Lunder 10, who called the on-call physician (Dr. Poliafito).  After consultation, he recommended bringing me to the MGH Emergency room and he would initiate the process of having me re-admitted.  The ER was crowded, but they worked efficiently to get me admitted, labs tested, EKG and X-ray completed,  and dosed with oxycodone, which began to release the pain.  In the afternoon I was moved to Room 1022 and began a long and welcome rest back in the restful cocoon and peace of Lunder 10.

In the early morning, I woke feeling refreshed and pain free.  I will be under careful observation with attention to any inflammation factors that may have precipitated, or could still precipitate, the pain event.  For me, it is an important lesson in taking my recovery slowly….

Second Re-entry

After two days I was again released from the hospital.  The plan was to wean me from steroids, and to allow me to keep two other medical appointments, which would have been cancelled had I remained in the hospital.  However, the following night I realized that my left eyelid had not been closing properly, and I also bit my left lip several times at dinner.  The next morning I called to report the symptoms and went to the hospital for what was to be a routine clinic appointment. Instead, they processed me to be readmitted to the hospital.  I was assessed for possible stroke (negative) and given an MRI.  The diagnosis was Bell’s palsy, an uncommon but known side effect of CAR T-cell therapy, that usually goes away in weeks or months

In the hospital they put me on increased steroids and also added a 5-day course of multi-hour infusions with immunoglobulins (IV/IG) to boost my immune system.  The palsy had become a significant nuisance making it difficult to eat. I had little to no control over the left side of my face – eyelid, nose, cheek, lip, and mouth.   I had to drink with a straw to avoid dribbling out of the left side of my mouth.  My left eye needed drops that blurred my vision and it had to be taped shut at night.   I could not smile.  My speech and my laugh were garbled.  I also began feeling pain on the left side of my face, which Dr. Frigault said was a good sign that the affected nerve was beginning to regenerate.  I also needed two new prescriptions, gabapentin and duloxetine, to address the nerve pain.

Eventually I was dismissed from the hospital and allowed to return to our home in NY.  Our return was, however, delayed by one day due to a slight problem closing my right eye.  An MRI confirmed there was a slight irritation to the facial nerve on the right side of my face, but Dr Raje felt I was on the right medications and that the palsy would improve with time.

I am writing this update six weeks later.  The nerve pain has subsided and the palsy has been improving, but very, very slowly.  I follow a regimen of  PT exercises several times a day and weekly massages.  It is a nuisance, but tolerable.  I have also been experiencing fatigue and body aches.  These are, again, possible side effects of the therapy, but they are also side effects of just getting old.  I will continue to work patiently towards increasing my strength and energy.  Time will tell….

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[1] Multiple Myeloma is characterized by variations in the structure of the antibodies produced by the cancerous  blood cells.  These antibodies look like an upside-down Y, with a heavy chain protein on the single upper arm and two light chain proteins on the two lower arms, one of which is named “Kappa” and the other “Lamba”.  In Kappa Light Chain multiple myeloma abnormal plasma cells produce an excess of kappa light chains instead of complete, functional antibodies. The uncontrolled cloning of cancerous cells in this condition disrupts the ratio due to the overproduction of “free” kappa light chains which can lead to multiple serious disease conditions.

[2] A PET Scan identifies areas in the body of highly active glucose update often revealing active cancer sites.

[3] CARVYKTI^© (ciltacabtagene autoleucel) is a B-cell maturation antigen (BCMA)-directed genetically modified autologous T-cell immunotherapy.

[4] A chimera is a mythical monster made of different animal parts, such as the Greek Chimera with a lion’s head, goat’s body, and snake’s tail. It is used in naming CAR T-cell therapy, as the genetic modification results in an antibody receptor added to the T-cells that is not found in the patient’s own body.

[5] The ICE score is a neurological assessment tool used to monitor the severity of Immune Effector Cell-Associated Encephalopathy (ICANS), a neurological complication that can occur after CAR-T cell therapy. It is a 10-point test that evaluates orientation, naming, following commands, writing, and attention.

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