ASCT how to prepare, when you receive treatment, and recovery successfully!
I have Cancer, Multiple Myeloma to be specific. I have had the early stages of multiple myeloma for three years and I finally moved to a point where I needed to be treated. I went through induction therapy in mid 2024. Search “griffin cancer study” for more information on this 4 drug therapy. The treatment worked and prepared me for an autologous stem cell transplant, known as ASCT or SCT. With this procedure a patient’s own healthy stem cells are harvested, stored and reintroduced into the patient after receiving high dose chemotherapy. My experience with the transplant is the text that follows. The good news is I feel very good after the treatment and wanted to share how I succeeded, with the help and trust of a lot of great people. Six months after the ASCT, I am what is called MRD negative which means that there is no indication of multiple myeloma in my blood, bone marrow, or the bone tissue itself.
I had been told that an autologous stem cell transplant can be very tough. I was able to go through it and come out the other side surprising my primary care physician and my oncologist.
I had multiple myeloma and knew the stem cell transplant was coming. I had gone through induction therapy achieving a very good partial response. My bone marrow was clear, but my blood had myeloma remaining.
The painful part was the neuropathy that was the result of one of the drugs in the therapy. I lost all feeling in my feet. When I went in for my initial prep for the transplant, I was gingerly walking with a walker, and had been for two months. The stem cell transplant had to be delayed three months. I was told by the transplant doctor / oncologist I had to be strong enough to walk by myself and the stronger I was going into the transplant the better I would fair through the event. I took that literally.
I admit, I am just on the edge of being morbidly obese. I had been going to the gym once or twice a week and seeing a personal trainer for 30 minutes a week to make sure I got to the gym at all. With the delay of the transplant and the warning from the transplant oncologist I started to focus on my strength. I doubled the times I was at the gym and the amount of time I spent with the personal trainer. I told the trainer that I needed to get stronger, and she proceeded to work me out. She kicked my butt until the day before my I went into the hospital.
I had a physical therapist at the time and she was ruthless. I went through a few personal trainers and was able to find one who understood oncology rehab. I did not have to explain what neuropathy is. The office only takes people with cancer. Find a person who understand neuropathy.
Additionally, I was told by my doctor to expect to lose 50% of my strength in the months after the transplant from the ordeal and it would take up to six months to regain my strength. It was tough to hear, but the doctors wanted to set expectations. I had no idea that that was going to be the outcome. It was not what I wanted, and I was going to fight it. I was scheduled to be in the hospital for 18 days, day -2 through day 15. (The planning starts with negative numbers or the days until you receive your stem cells). From everything I was told the number of days was optimistic and a friend who went through it made it in 25 days. Another made it 23 days.
During the 3 months of delay, I had caught a horrible cold and then fought 2 months of pneumonia. It did not matter, I continued to work out and go to physical therapy. I wore a mask on occasion for the cold.
I checked in to the hospital just after New Years Day. The team that started me up told me that there were three things I had to do to be successful and I listened intently. They said no matter what drink as much water as I could. Eat as much as possible even if it tasted terrible. And walk the halls, or the loop as many times as possible even if you did not have the strength. They would take care of the rest. If anything was bothering me, I should tell the nurses and they would take care of it.
I drank water and urinated more frequently than any time in my life. I had no limit on what I could order and how frequently I could order food, and I ordered a lot of food. Most tasted terrible and I ate a good deal of that food. Some tasted good and I ate more of that. The next day, what tasted good one day tasted lousy the next, I kept eating. I gained about eight pounds in the hospital. I share my food with my wife. According to her the food tasted just fine. Chemo sucks and the impact on my taste buds was varying by the day. I was fortunate, my wife was tremendous support. We went for walks daily. We never walked less than 15 laps of the halls. No one came close to matching the number of laps we put in. One of the nurses created a laminated chart to track the number of laps that we could post on our door. It did not matter if I had meds being pumped into me or not, we walked, I drank and I ate three to five meals a day.
On day 17 the doctors came in and said you can go when you are ready; three hours later, we were out the door. The check out team went over the rules. The most critical, I was not allowed to drive because my reflexes were not going to be good enough. I lost access to my wheels until my strength and reflexes returned. After a few hours, I rang the bell, and we were out of there.
My wife drove us home. I rested the next couple of days when I could. Being home was wonderful. We went back each day for blood tests and more drugs. Most important we were home. I started working out four days after checking out. My personal trainer and my physical therapist were intent on me keeping moving, and I did. I was lifting lighter weights four days after checking out of the hospital. I was stretching and getting foot massages seven days after checking out. I am at the gym twice a week. My wife and I walk every couple of days. We 1.4 miles two weeks after exiting the hospital, the longest I have been able to walk in 6 months. I can lift 100 pounds on the machines with each arm and it is only 49 days since the transplant. I saw my primary care physician and he was both thrilled and shocked. He has a bunch of patients that have gone through stem cell transplants. I look good, although bald as a honey dew melon, and felt great.
I started my Revlimid, daratumumab, and dexamethasone a couple of months after exiting the hospital. It is not what I was looking for, but maintenance is required. Multiple Myeloma sucks.
My advice is work as hard as you can to gain strength before the stem cell transplant. When you are in the hospital drink water until you feel like you are constantly floating, eat as much as you can during your stay at the hospital, walk even if you feel like hell, because you will, and continue after you are released from the hospital to work out. I gained eight pound in the hospital and lost all in the weeks after coming home.
