Today I began my second and final round of Lemtrada (alemtuzumab), a drug also used to treat lymphocytic leukemia. The drug is administered by IV for 5 days in row, and 12 months later for 3 days in a row. Since I completed my 5 day infusion a year ago (you can read about my first round here DAY 1 DAY 2 DAY 3 DAY 4 DAY 5), I’m now completing my last round this week!
Essentially the drug is targeting my malfunctioning immune system (MS is believed to be an autoimmune disease that causes my immune system to attack the myelin coating, or the protective sheath, on the outside of my nerves). The idea is that if they can kill off my malfunctioning immune system, when it heals and comes back, it will come back healthier, no longer attacking my myelin. That’s the goal!
My hope is to keep people updated on my journey but also to provide a resource for others who are awaiting their treatment, or thinking about the possibility of Lemtrada. I hope you find it helpful!
4:30am – I got up early to have a nice shower and prepare for the day. I always feel so much better when I have a shower, do my hair, put on makeup etc. When I dress like I’m ready for the day, I think I psychologically come in with a different attitude. I packed my day bag which included: A small knit blanket, a pillow, my Ipad, my phone, earphones, a book (Leadership Pain by Samuel R Chand), candies (to suck on to overpower the metallic taste that comes with steroids), my medication, a water bottle and snacks!
I also made myself a smoothie with my favourite plant-based protein powder, Vega One in hope that it would kick start my day well! I was ready to go by 6:00am for our short 50 minute drive from Abbotsford to the infusion clinic in New Westminister.
7:00am – We arrived at the infusion clinic right on time and the the nurse began by going over some paper work and questions about my recent health. By 7:30 she started me on Cortisone steroids, given each day before the infusion to help combat some of the side effects that often comes with Lemtrada. The steroids aren’t bad, but they do leave a terrible metallic taste in your mouth!
9:00am – By 9:00am I was given Lemtrada by IV. The actually drug can’t start until 9:00, until a doctor is present and on-call in the building in case something goes wrong. I was also given gravol and benydryl to combat common side effects like nausea and hives/itching. I am super sensitive to things like gravol and benydryl, so with 1/2 hour I was out like a light! I slept like a baby until about 12:30, barely waking up to my blood pressure and temperature being taken every 1/2 hour!
12:30pm – When I woke up from my nap I have a pretty strong headache behind my eyes, but beside that, no other side effects. I was able to read a little and catch up on all the encouraging messages I received that morning! Thanks friends! During that time our friend, colleague and mentor, Fred Fulford, stopped by to visit! It was so nice to have a familiar face stop by! The afternoon flew by!
1:30pm – By 1:30 the drug was finished but I had to stay hooked up to the fluid for 2 hours while the nurses continued to monitor my heart, symptoms and side effects, but beside the headache, which refuses to go away, even with medication, I’m all good!
3:30pm – I was discharged 1/2 hour early and was home by 4:30! Yay!
Thanks so much for your unbelievable outpouring of love and support! I am convinced more and more that I really do have an incredible community standing with me! I’m in great spirits and ready to rest tonight and take on the day again tomorrow!