Doctor’s Diary: A terminal disease intercepted by modern medicine, October 5, 2024

A terminal disease intercepted by modern medicine

I have been a physician for over forty years with an office practice and providing geriatric house calls in our community. Now, I am also a caregiver.

My partner, Robin, was diagnosed with a rare malignancy in November 2022, known as “anaplastic thyroid cancer.” She was given six months to live.  

Surgery to remove what they could took 9 1/2 hours, and seven weeks of subsequent radiation and chemotherapy helped slow it down. Traditional medicine using surgery, radiation, and chemotherapy is at an inflection point and has been augmented by techniques that unravel DNA.

“Biomarker analysis” of her tumor revealed a mutation in the cancer and suggested certain new drugs within the realm of immunology and “targeted medication” might be used to interfere with the progression.

Immunotherapy using Keytruda was started by intravenous infusion every three weeks to enhance the body’s white blood cell’s ability to attack the cancer.

Once the cancer was found to have spread to her thigh and lungs at the end of December 2023, it was decided to add a “targeted” medication. This oral drug was Retevmo.

After four weeks, Retevmo had to be stopped because of abnormal elevation in liver tests, but on the same day it was halted, a PET/CT scan had been scheduled.

Mind you, after only four weeks of Retevmo treatment, the previously positive PET/CT scan revealed “no evidence of disease” (NED). A clinical trial using a blood test known as “ctDNA,” which measures specific cancer cells in her bloodstream that were positive in the past, was now negative. Four subsequent scans this year, as well as the blood tests, have shown NED, while Robin is now on a daily oral dose of a drug similar to Retevmo, Gavreto.

Oncology specialists will not use the word “cured” for this type of cancer as time will better define this hopeful word as the unfolding of more data on her and other patients is collected.

Robin’s medical care was guided by a team of healthcare professionals coordinated by oncologists at Cedars-Sinai Medical Center in Los Angeles. The science behind their treatment plan was new, so they referred us to MD Anderson Cancer Center in Houston for collaborative care. 

Our journey is still bumpy, and medical decision-making does not always have an unequivocal “yes” or “no” answer.

Stumbling blocks have arisen from more than medication side effects or travel expenses. Insurance companies initially played a role in the “denial” of testing even though it was ordered by the foremost doctors and experts in the world.

One example was when MD Anderson ordered a PET/CT scan, but when we came for the appointment in Houston and arrived in the waiting room, we were told the insurance company had denied the test. I was on the phone for 3 1/2 hours with multiple insurance representatives, explaining the importance and need for the testing while other patients in the waiting room listened to my pleadings. Finally, they agreed, and the waiting room patients and staff erupted in applause and cheered the fought over decision with us!

The “targeted” medication cost was shocking: Retevmo was $30,000 per month. Fortunately, Cedars-Sinai helped us negotiate with the pharmaceutical company as we were considered a special need secondary to the terminal diagnosis.

Robin and I have attempted to inform the public of these new treatments against cancer and were featured in the Los Angeles Times by columnist Steve Lopez (4/13/2024). Plus, we have enlightened many older adults in the Santa Clarita Valley through our senior center. A volunteer at the center told us her 47-year-old daughter had stage IV uterine cancer, and she was a veteran treated at a local VA hospital. 

A biopsy report was provided to me by her family, and I noticed there was no “biomarker analysis” done on her cancer. From that, and through other research, we found less than 20% of VA patients have biomarker testing done on their pathology reports and, therefore, would not be able to benefit from the new tools using immunotherapy or “targeted” treatment. The cost of this test presently is under $300.

Also, during our ordeal, executive orders related to the COVID-19 pandemic ended, so having a telehealth Zoom visit crossing state lines with MD Anderson in Texas was illegal. This, of course, hampered communication with our experts in Houston, as their doctors were not licensed by the state of California. Our online national support group, which we joined through MD Anderson, had many participants facing the same problem.

Robin and I are Assembly Members of the California Senior Legislature, so therefore we wrote two proposals to be presented in October to state and federal legislatures addressing these problems:

1) Request the VA to provide “biomarker analysis” on all veteran biopsies so they might be provided the opportunity to consider treatment with new immunotherapy and “targeted” medication;

2) Ask the California legislature to restore the ability for cancer patients to have telehealth Zoom visits from out-of-state oncology physicians.

Since our Governor and President are “lame duck,” we have also asked them to consider Executive Order legislation to jumpstart these initiatives, as time is of the essence in fighting cancer.

Traditional cancer treatment using surgery, radiation, and chemotherapy might soon be supplanted by more effective immunotherapy, and “targeted” medication, but we are still on a learning curve. Evidence-based data must continue to be collected, and participants must be mindful of all side effects of these new medicines.

Many doctors, even some oncologists, are unaware of these new treatments. Plus, if you live in rural areas, you may not have nearby specialists who know about advancing medical care, and many primary care doctors need to be made aware of this new science.

For the moment, it is best to seek care at prominent teaching institutes or Centers of Excellence, with patients encouraged to ask their local doctor for assistance in finding this care.

More importantly, should you be told you have a diagnosis of cancer, be sure to have a “biomarker analysis” done looking for DNA mutations, as it might expand your treatment plan and improve your survival chance.

Our goal is to continue to inform the public of advances in cancer treatment, and bring equity and better doctor/patient communication to all those, especially veterans, who might be diagnosed with this dreaded disease. Statistically, cancer is #2 on the top ten list of leading causes of death in the United States. It is time we make every effort to get it off the top ten list forever.

Being a physician and providing house calls prepared me to be a better caregiver to Robin. However, it also gave me new skills, allowing me to continue fulfilling my duty as a doctor to the people I serve.

Gene Dorio, M.D.