My last update was written right before mom’s oncology follow up in January. At that time we received the encouraging news that her CT scans showed her disease was still stable. She continued to have mild ascites and a couple enlarged lymph nodes, but there was minor improvement and definitely no evidence of progression. Her tumor marker had elevated quite a bit, but her oncologist was not concerned because it wasn’t consistent with her CT scan. Oddly enough, mom’s tumor marker has never been consistent with her scans and symptoms throughout this whole journey. Her oncologist was happy to see the CT had not worsened, and mom was advised to continue the same oral hormone blocking medication. She would get yet another 3 months off of chemotherapy treatments.
Through most of those 3 months mom overall felt pretty good. She was in Physical therapy to try to regain strength which was fairly helpful. We were able to spend a lot of time together. She helped me set up and decorate a craft room in my house, we painted several door hangers together, and made trips to get pedicures and lots of shopping.
Mom has had some abdominal discomfort since even before her January CT scan, but her oncologist couldn’t see any cause for it. We chalked it up to scar tissue from her surgery or GI issues as mom has struggled with gastroparesis and IBS for years. As we approached her follow up in April this abdominal pain worsened. Several weeks before her CT scan, she also began having chest pain especially with deep breathing. About a week before her appointment this worsened causing fever and significant shortness of breath. I went over to her house late on a Wednesday night to listen to her lungs and found that she had significantly diminished lung sounds on the left side. She ended up going to the ER where she was diagnosed with pneumonia accompanied by a large pleural effusion. She was admitted and started on IV antibiotics right away. The next morning they drained about 2 liters of fluid from her lungs. The fluid was sent off for culture and cytology to determine if it was related to infection or to her cancer. She very quickly had more fluid accumulate so then had a chest tube placed to continue draining fluid while in the hospital.
She stayed in the hospital for four nights then was discharged home on four weeks of oral antibiotics. After coming home from the hospital she felt very tired and weak with continued mild chest pain. The day after she came home, the cytology report from the fluid they drained was posted on her patient portal. Unfortunately, the results showed the fluid was positive for malignant cells. This was definitely not what we wanted to hear. Her pulmonologist called also to give her results and explained that hers was the first case he had seen where the pleural fluid had both bacteria and malignant cells together. A lot about mom’s case has not fit the norm and after hearing this she said she would like to be “a little less special.” She has kept her sense of humor throughout this entire fight.
On April 15th, mom had her follow up appointment with her oncologist. Due to the malignant effusion he informed us, as we already knew, that the hormone blocker was no longer effective for her. Because of this, he has decided to start her on chemotherapy yet again. He decided to begin two new chemo treatments she has not tried. These two medications work very differently then what she has been on previously, and the doctor says it is an aggressive treatment. The goal is to hopefully get her to remission which mom has not actually achieved yet.
About a week after this appointment, mom was back in the ER due to returning fever and worsened symptoms. This time she had even more scans done and infectious disease was consulted to ensure she was taking the right medications. Thankfully, the pleural effusion had not returned. Mom stayed in the hospital another four days and was released home on IV antibiotics through home health. Unfortunately, she continued to feel very fatigued and weak. It is discouraging because prior to pneumonia she had been feeling really well and was looking forward to enjoying a few weeks before starting chemo. Now she Will start chemo already worn down and weak. Stupid covid also kept us from being able to visit her in the hospital. Thankfully dad was able to be with her, but I would have loved to have been there as well.
Also, unfortunately because of her current pneumonia infection she can not begin chemotherapy until this is fully cleared. Mom had an appointment with the pulmonologist on May 12th. They repeated the CT scan and her physician was happy with the results. The pneumonia has improved and they have cleared her. Because mom has still been so tired and weak, the oncologist wants her to wait one more week to start chemo in hopes that she will build up some more strength. Once she begins, the plan is to do 3 treatments which are in 3 week cycles and then they will repeat her CT scan to determine if it is effective and if they want to keep her on this treatment or change at that time. Her oncologist informed us these medications are very hard on the bone marrow and will likely cause increased fatigue and hair loss. Mom as always has a great attitude about it. She told Dr. Burnett that she really wants to fight. She has not lost this fighting spirit at all and I am so proud of her. She should start this chemo in two days, on May 20th. We trust God and pray that she responds amazingly well to this treatment. Please continue to pray alongside us.