My previous post (January) included the experiences and thoughts regarding the first 14 days of a Car T cell protocol. This post deals with the last 14 days and what comes next.
After the first 14 days, all looked normal and so the focus was on staying away from viruses or germs or anything that could cause an infection or problem. My regular organ functions (liver, kidneys, heart, lung, etc.) through blood numbers were monitored looking for any abnormalities.
The three times a day blood pressure and temperature reports required during the first fourteen days were still required, however after Day 14 I did not have to go into the clinic/hospital for a blood draw every day.
During days 15 – 30 time was spent reading, staying away from people, and basically trying to let my body recuperate and recover. The fatigue was significant. Naps/rest during the day were required. The nurses and FNP’s who I would see would remind me that despite the outside looking calm and collected, the inside of my body was really working hard and had been through a lot.
It was quite a relief to have a day off between visits to the hospital. When I would go in, the entire visit took only about two hours. Of course, the ease of the visits was totally related to the blood numbers that were witnessed. The ANC (Absolute Neutrophil Count) number seemed to be the most critical and often time was the determining factor as to how I was doing and what treatment, if any, I was to receive. If my ANCs were not too low (above 250) then the visits were routine. If certain blood numbers come back indicating some type of concern with organ performance that is an entirely different situation and a more intensive experience would have been expected.
The protocol, for me, was less intensive than the stem cell transplant/bone marrow transplant that I undertook some nine years ago. Some of that may have been because I am so much more familiar with what it means to live with Multiple Myeloma and the accompanying hurdles and challenges. For instance, with the bone marrow transplant I had a tri-port sticking out of my chest which at the time seemed very weird. For the Car T Cell protocol, I had a much less invasive pic line coming out of my right arm (I am left-handed and so we chose the right arm for the pic line). Taking a shower with a pic line is substantially easier than taking one with a chest tri-port.
I enjoy being active and this protocol, while certainly less physiclly impactful than a bone marrow transplant, sapped my strength and stamina to a degree not ever experienced before. It brought on a very very deep tiredness. I just did not have it in me to be physically active. Short naps (two or three/day) helped with tiredness. If I was not reading or visiting with my wife who was my caregiver, I had ample opportunity to contemplate whatever I wanted to contemplate.
Sidenote here: Spending 30 days in a motel room with a Car T cell protocol recipient is not anywhere near as enjoyable as time spent walking on a beach, hiking in the woods, or going out for a wonderful evening dinner. It is not even close to watching a hockey game. None the less, my caregiver, my wife, did not once (near as I can tell) ever threaten to walk out or hit me in the head with a frying pan and we are still married! I want to go on record as writing “she was sensational.”
OK, back to the experience.
Having time to contemplate can be dangerous. It was critical that I did not “think” too much about the future other than the next day. I tried not to spend too much time wondering if “things” were going to work out and what it would look like if they did not. I also held off the urge to spend time dreaming about a life without any future chemo treatments. “Stay in the now” became my mantra.
A bone biopsy on Day 30 was conducted and the result looked promising. A huge relief.
I have been sent home with the knowledge that weekly blood draws, tests, injections of whatever it takes to keep me healthy would follow. The protocol is not complete after you leave.
I am on about day fifty. I go in once a week for blood draws and have had to have infusions of “stuff” because my ANCs are still low. In general I am still avoiding people and places. Each day moving forward I seem to be more vigorous and have more energy.
The next bone biopsy is on day ninety. It will be a more definitive reflection as to how I responded to the new cells. Waiting is somewhat stressful. However, nothing new for any MM cancer patient.
It is sunny outside, so I am getting my shoes on for a hike.