By Angela Keith
In September of 2019, I was diagnosed with Appendix Cancer, which I have been told is very rare. So, at my six-month checkup in June 2021, I received the news through a medical portal that I had either leukemia or lymphoma. This was not the best way to find out you have cancer. I contacted my local oncologist to obtain additional information. The nurse then told me on the phone that they were meaning to call me about my PET scan results.
I saw the doctor a couple of days later to be informed that she thought I had Mantle Cell Lymphoma, but she really did not know how to treat this type of cancer. She recommended that I might want to obtain a second opinion and she would send the records along with a referral to MD Anderson. Two days later this was still not completed. I am not a very patient person about some things in life.
I picked up the phone and contacted MD Anderson myself. The woman on the phone was wonderful. She stated she would go through a list of questions to direct me to the correct oncologist. She inquired if I had my medical records, which I downloaded and emailed straight to her. Within three hours, I had an appointment with Dr. Jain the next week. After going through all the MD Anderson tests, we received a telephone call from my new oncologist with results. The local oncologist said that 8-10% of my spleen was cancerous but MD Anderson reflected 40-60%. I was advised I had Stage 4 Mantle Cell Lymphoma. The outcome was grim, after looking everything up on the Internet. I had to wait until October to start my chemo plan, which was established based on surgery for my spleen.
My first treatment was okay, and I only had mild side effect such as getting cold during the treatment. I was working full-time as a District Sales Manager for Hertz Car Rental. I would go to work but come home early to rest. My second treatment was much harder– I was so cold that I was shaking uncontrollably. I am not aware of what they gave me but I had several nurses and doctors trying to stop this side effect. When it was time for my third treatment, I was hardly able to walk due to the pain in my hips, legs and back. An MRI was completed at 6:30 pm and as I walked around the corner to leave, I saw the results on the screen. I was lite up like a Christmas tree. I could not tell my husband as he was having a very hard time with all of this but would not leave my side. We received a phone call at 9:30 pm stating the news was not good and we needed to be to MD Anderson by 9:00 am the next morning.
When we arrived the lymphoma team was waiting for me. All of the tests started again along with different chemo treatment. I do not know which type of chemo I received. Dr. Jain came into my hospital room to tell us that we would be there for a minimum of three months, and he wanted to me to undergo CAR-T cellular therapy. I did not understand all of what was going on but he was my physician, and we trusted him. This procedure was approved by my insurance immediately. So, my white blood cells were removed and sent to the lab to be converted into good white blood cells to fight the disease. Ten days later we were told that this had failed and a new collection would be performed. It was completed, and the lab was successful?
On February 14, 2022, with six nurses, three doctors, my husband and myself in place, the CAR-T transplant was performed. The process only took about 15-20 minutes to be placed in my body through an IV. I was monitored continuously every 15 minutes, then 30 minutes, then one hour and then finally every two hours. Every shift change I had to answer a list of questions, etc. I had very little difficulty with this for the first two weeks and was released from the hospital after two weeks.
My husband was so excited since he had to stay with me 24/7 during this time frame to watch to for any changes in my mental status, which the nursing staff might not know about. Then, 27 hours later, I was admitted back into the hospital with a high fever, chills and confusion. The next two weeks were a blur. I was not able to answer questions, walk without assistance, experienced incontinence and had trouble eating. I had an ice blanket place underneath me to help with the fever. Finally, after two weeks, I was released again from the hospital. I was not able to really walk, but I told the physical therapist I had to get out of the hospital or I was going to lose my mind (LOL). I left the hospital with my walker, but I was determined to walk without assistance in a couple of days. I was able to complete this goal. I started feeling the tumors on my back and legs slowly disappear.
So March 18, 2022, after my new set of tests, we were told I was in full remission but due to how massively aggressive my Stage 4 Mantle Cell Lymphoma was, I would have to be watched very closely. Dr Jain stated that out of the 189 patients who had to undergo CAR-T, mine was the most aggressive he has ever seen. This was not an honor I wanted to have. I have been in remission now for almost one year. During this time, I have quit my job and been approved for Social Security Disability Insurance (SSDI.) My lack of concentration and fatigue was not beneficial to the company, so I retired. So now I stay at home with my little Yorke “Houston”, clean my house, help my son/daughter and anyone who may need assistance. I stay very busy every day but must make a list of what I have to do so that I can complete my daily goals.