What a good day! I had my last treatment here, which was an infusion of rituximab. Rituximab is given at the end of HSCT treatment to destroy any “rogue” lymphocytes that might still be present in my blood. It is given in an infusion over several hours. I did have a small side effect reaction shortly after it started. I felt a dry, sore sensation in my throat like the first signs of a cold. It came on suddenly and the nurse stopped my infusion and consulted Dr Elias who ordered a steroid infusion. The steroid infusion helped immediately. According to the doctor, this is a common reaction and once I received the steroids, I had no further issues. So, that’s it. I’m done with blood tests and IV’s.
Now that I’m done with HSCT, I truly can’t say enough about the doctors and staff here in Monterrey. The care that I have received has been wonderful. From the cleaning staff and drivers to the office staff and the doctors they have been first class.
I haven’t mentioned this before now, because I didn’t want my family and friends to worry, but last month the clinic experienced its first death of a MS patient getting HSCT (1 patient out of the hundreds already treated). The clinic, of course, over the last decades has had cancer patients who passed away, but this was a first in Mexico for MS patients getting HSCT. I found out about this death shortly before I was scheduled for treatment and naturally red flags went up. Fortunately, I was able to directly reach out for information and advice from a person who was in Monterrey last month. This person reassured me that the care here was excellent and the patient’s death wasn’t due to any problem on the medical care side nor was there any problem with cleanliness in the apartments. I later learned that the patient who died had unfortunately developed sepsis and then very rapid heart failure.
During our initial patient meeting on the first day, the doctors were very forthright in addressing this situation. This also was reassuring and they didn’t try to hide anything. I know that the death has really shaken the medical and administrative staff here. During the weeks of treatment they get to know their patients so well. There is an intimacy here because there is so much close contact between the staff and patients. They take their responsibilities very seriously.
Worldwide, the rate of death in HSCT for MS is less than 1%. That risk is real and should be respected, but all the medications that are offered for MS, including the Tecfidera that I’ve taken, carry a risk for allergic reaction or infection that can cause death. I understood this risk and felt like it was worth it. When I came here I expected to be in a cocoon for 28 days to help mitigate my risk of infection. For me, the worst part of the treatment was boredom. The time, expense and worry associated with this experience was well worth it for an 80% chance of stopping my MS. Now only time will tell if it works, but I’m happy to be where I am, regardless of the final outcome for me.
I’d like to again thank my family and friends for realizing that I had done my due diligence and supporting me in seeking medical treatment in another country. Trust me, I realize what it sounded like when I first told everyone. I’d like to again thank Mark McClaskey for informing me about HSCT in the first place. I’m so appreciative that Anji’s employers kindly arranged for her to be with me during treatment. We’ve had a lot of help with practical things on the home front. Our neighbors, the Bonzagni’s have been watching our house. My brother Greg and his wife Jenn have added our dog to their menagerie for a few months and my brother Scott has kept track of our bills and mail. And we are both so thankful to my in-laws, Kaye and Ken, for taking such good care of our daughter during the last 28 days.
Lastly, I’d like to thank my wife Anji. You’ve been my rock and my partner in boredom. There’s no one else I’d rather have by my side. In more ways than one, this would not have been possible without you and I realize that. You have my eternal gratitude and love. You made this easier and I know we’ve done the right thing. I love you.
PS Tomorrow we have our final consultation to go over post-treatment recommendations and what to expect over the next 6-12 months. I’m looking forward to this consultation and I’ll post tomorrow about their recommendations so my family and friends know what to expect too.
chris selzer's HSCT quest 