February 2024 Newsletter

Dear friends,

This month’s newsletter is an interview with my old neighbor and very good friend, Liz K, who, at the age of 63, was diagnosed with metastatic endometrial (uterine) cancer. After a turbulent course of treatment, Liz has made the difficult decision to stop treatment.

Thank you, Liz, for sharing your experience with me and our readers. Please tell us a bit about your diagnosis.
Thank you, Manju.

My diagnosis of endometrial cancer came in December, 2022.

I had been very active with volunteer work during 2022 and felt great. The only thing I noticed was occasional blood on my panties. Since I did not have many risk factors for endometrial cancer, I delayed making an appointment with an OBGYN. Finally, in November, 2022, after confiding in my husband, he pushed my primary care doctor to get me in to see an OBGYN immediately. The OBGYN performed a very painful biopsy with no type of local anesthetic. Despite my inability to take the pain, there was enough tissue to determine characteristics of the cancer cells. After that visit, I had an ultrasound and CT scan to determine how far the cancer had advanced. The cancer had spread to my fallopian tubes, ovaries, upper femur, and liver.

What was your initial reaction to the news of your illness?
I was shocked that it was so advanced. I had had no pain or other symptoms, I felt well, no weight loss and I was very active. I felt good. I had occasional bleeding, but ignored it for a while because I was so busy. By the time I had the investigation it had metastasized.

My husband has been a pillar of strength. He’s a scientist, and used to work for Pfizer. He took charge. I was sure I’d get through it and I’d be okay with treatment.

What has your journey been since then?
The first approved line of treatment for this cancer were the combined chemo drugs, Carboplatin and Paclitaxel. I started them in January 2023. As expected, they made me lose my hair, but I also developed ascites (fluid accumulation) in my tummy, which affected my breathing.

They also proved ineffective as my cancer kept growing, so after three months, the first regimen was stopped and the doctors began a second regimen on me.

I was switched to a combination of Keytruda (infusion every 3 weeks) and Lenvima (daily pill). There were many side effects with these drugs that had to be monitored closely. I developed neck pain, mainly at night. My neck would be so painful it was difficult to even turn in bed. My blood pressure went up and my thyroid stopped functioning, a condition called hypothyroidism.

The tumors appeared to be going down, but in July, I was admitted again because of memory problems. My husband noticed I was asking weird questions, or I’d go into the study and be there for hours, not knowing how to organize things. My executive functions were quite poor.

I was admitted to the hospital to see if the cancer had spread to my brain. After many tests and scans, they determined that there was no spread to the brain. Nevertheless, I had no appetite and was losing lots of weight while on the drugs. My memory was so bad, we decided to stop the chemo drugs.

They were restarted again later, but my urine protein went up, and my confusion was worse again, another sign to the doctors that I had to stop the drugs.

My oncologist stopped everything and prescribed high dose prednisone to see if brain inflammation was causing the problems.

I was very depressed at this stage.

The prednisone was eventually tapered to 10mg. My appetite came back and my blood pressure was under control. I responded well to the prednisone and they concluded there must have been some swelling in my brain.

After that, my husband and I made the difficult decision, with my oncologist's approval, to stop active treatment and to enroll in hospice, where I am currently.

Do you have a family history of cancer?
None in my immediate family. My dad’s sister had colon cancer.

Would you have done anything differently?
I’m not sure really. I was under an insurance plan that meant I had to go to a specific hospital. The oncologist there seemed so rattled by my diagnosis, she’d pull out a calendar and be confused when the next treatment would be. My husband and I didn’t feel confident I’d get the best care there.

I changed my insurance and saw someone at Duke Oncology. I felt much more comfortable. I suppose what I learned was you need to have confidence in your healthcare team.

Cancer is said to be expensive; can you elaborate?
The cost is huge. For example, the cost of one month of Lenvima tablets was over $21K. I hit my deductible pretty quickly. But after that the insurance paid for most things. It made me wonder how devastating it would be if you don’t have good insurance.

I recently read When Breath Becomes Air by Dr. Paul Kalanithi, a neurosurgeon, who died of lung cancer. And when he first learns of his diagnosis he says, “And with that, the future I had imagined, the one just about to be realized, the culmination of decades of striving, evaporated.”