HSCT Part 4: The Treatment Itself
Preparations for my trip to Mexico caused so many emotions: worry, excitement, anxiety, and a feeling that I just had to take a breath and get it over with. My 'Hail Mary' moment! I was far from the ideal candidate for the treatment and was told the goal was just to halt the disease's decline. I had to try though; I couldn’t just let the poltergeist take its course without a fight.
I'm going to tell you the full truth
Hematopoietic stem cell transplantation (HSCT) was unbelievably hard; so painful, so exhausting. I’ve been fighting this disease for over eight years now and I thought that I knew about suffering, but HSCT was the worst. However, I believed that if this could diminish just some of my awful MS symptoms, it would be worth it. I was secretly praying for more than just a little improvement.
Getting to Mexico
The journey to Monterrey, Mexico as a disabled person was tough (as we all know), plus I was alone. Early the next morning after arrival, the lab technician came for a blood draw and a COVID test for me and for my caregiver (who would be living with me for the next month 24/7).
I was handed an itinerary binder for the days ahead, but a quick glance at the size of this binder told me that it would have to wait...I tossed it aside for some “light” reading later! Next, I was ushered off for a four-hour, full body MRI, then a trip to the grocery store to stock up on food for us both.
COVID threw us for a loop
The second day, just as we were about to leave our apartment for the clinic, my caregiver locked herself in her room and messaged me that she had tested positive for COVID; she couldn’t stay, and would have to leave right away. I was sorry for her, but also for myself. What was to happen now? Could I continue with the treatment? Luckily, I tested negative, but I had no one to stay with me during the treatment.
The good news was that I could carry on with a full day of physician consultations, testing, and could learn the overall plan. Everyone was amazing. My state of mind wasn’t great, though, because I had nobody to help prepare food, or generally look after me and care for my health. I was worried about possibly having to go through this grueling treatment all by myself, or worse, test positive for COVID after the five-day waiting period and have to go home.
In the end, I had two or three days alone before a new caregiver arrived. His name was Fernando, and he was a real gem.
My HSCT treatment experience
The treatment plan at Clinica Ruiz (CR) is similar to a handful of other HSCT programs around the globe. Each person receives a dose of Cyclophosphamide (chemo) based on 200 mg/kg of body weight, split up over four days. At CR it is given with two doses back-to-back, then each person starts on daily shots (quite painful) of a drug called Filgrastim, which my doctors explained, forces stem cells to migrate out of the bone marrow and into the bloodstream.
I was given these shots until enough stem cells had migrated into the bloodstream for collection via apheresis (like dialysis), and then set aside for re-infusion later. One day prior to apheresis, I had a PICC line put in, which is a thick catheter that goes directly to the heart via the subclavian vein. This process made me feel very anxious, but in the end it was a non-event.
The apheresis process was one of the worst experiences of my life. Once I was all hooked up, it felt as if a garden hose was being sprayed right into my heart. The high pressure throughout my whole body, felt like I was being levitated off the stretcher. It was agonizing in so many ways, as all my MS symptoms exploded. You cannot move at all once this starts. Thank goodness I had a bedpan, because there weren’t enough Pull Ups to deal with my constant need to pee.
My blood was pumped in and out simultaneously via the PICC line, through the apheresis machine beside me as it collected the stem cells, which were sucked up into an IV-type bag. It took just over four hours, not including set-up and tear down.
More meds and getting my stem cells back
Right after that, I was taken to have my third dose of Cyclophosphamide. The fourth dose was administered the day after. I felt so, so ill. Then I got my stem cells back. That day is a big deal and they call this a milestone - the patient’s new birthday! I was gifted with a Keto chocolate cake. Yummy.
My extreme physical and mental reactions
During that first period (pre-apheresis), I was very sick, but I never puked. The chemo hit me really hard; unknowingly, I had become neutropenic (zero immunity) which apparently was extremely rare. My body’s reactions were terrifying: spasticity, bladder pain, body pains, plus I went into a relapse. It wasn’t just the physical impacts that were tough - many came out of left field - it was the toll on my mental strength. At one point, I quietly sobbed for my childhood stuffy to hold onto. Other times, I looked into the sun for the faces of a few loved ones I’d lost in recent years telling me to go on. It was hard.
The second part of the process (post-stem cell transplant) was just as hard. The two doses of Cyclophosphamide put me back into neutropenia again which was the goal at this point. The daily Filgrastim shots started to help rebuild a base level of neutrophils (bacterial immunity), then I was ready for one final day of treatment, Rituximab.
Throughout the whole 31 days I was there (longer than most), we were constantly trying to mitigate my problems and pains. I was incredibly sleep-deprived from everything.
Everyone's experience is different
Everybody has a different response to HSCT. People have said they were bored, waiting for recovery. That was the dead opposite of my experience. I was never bored. I felt as if I had golden hands on my shoulders: each time something could have gone really wrong, but didn’t. I was lucky.
As I finally finish this article I started months ago, I am 7.5 months post-transplant and doing immensely better than pre-HSCT. I am so grateful to CR and all their amazing staff for offering this treatment that is unavailable in my own country.
If you’d like to read my day-by-day journey on my blog please start here.
Were you misdiagnosed with something else before receiving a MS diagnosis?