Monthly Archives: February 2016

TREATMENT – MY LEMTRADA STORY – ROUND 2 | DAY 3

February 25, 2016

On November 10th 2014 my neurologist at the UBC Centre for Brain Health confirmed the diagnosis given by my GP few months earlier that I did, in fact, have multiple sclerosis (If you haven’t read my diagnosis story yet, you should totally read it here. I promise it’s worth the read!). After looking over my MRI images and chatting with me about my disease progression he recommended a brand new treatment called Lemtrada as a first line treatment, a treatment that would hopefully halt the progression of the disease for 10-15 years. The drug had just been approved in Canada (even before it was approved in the US) and I would be one of the first to undergo the treatment outside of the clinical trial patients.

I read every piece of information I could get my hands on and after much consideration and prayer, I decided the benefits outweighed the risks and on March 2, 2015 I went for my first of 8 infusions (you can read about my first infusion here.)

My first round of treatment (March 2 – March 6, 2015) was 5 consecutive days and began the process that would protect my malfunctioning immune system from attacking the myelin (the outer coating on the nerves – kind of like the outer coating on an electrical wire) in my brain and spinal cord. 12 months later I would have to return to finish the process off by doing 3 more days of infusions. Well, today I finished my last one!! All 8 infusions are complete and I will hopefully not need any more treatment for 15 years!

5:00am – I had a great night’s sleep last night and woke up ready to take on my final day! I started the day off with a quick shower, wrapping my IV in plastic wrap to protect it from the moisture, got myself ready, and once again started my day with a VegaOne smoothie to give me some extra nutrients to start the day!

7:30am – When we arrived back at the clinic I was still experiencing some heaviness in my chest, making it difficult to breathe deep. My vision was also blurry with little floaters. Besides that I felt pretty good! My IV line wasn’t working as well as needed so my nurse switched it up to another vein and I was ready to go!

8:00am – Before I get the Lemtrada each day I get an hour of steroids (prednisone) to combat some of the side affects that come with an intense treatment like Lemtrada. I also take benydryl and gravol to fight off nausea and rashes/itchiness, which induces what I like to call my drug coma because that stuff knocks me right out!

9:30am – As soon as a doctor is in the building I can start my last round of Lemtrada! Yay! It takes about 4 hours to run through completely, most of which I sleep through because of the other medication they give me.

1:30pm – Once the Lemtrada is finished dripping I was observed for 2 hours to make sure my heart, blood pressure and temperature were okay. Clark and I passed the time with a game of cards, which I totally let him win. That’s not true, I never let anyone win. I love winning.

3:30pm – After my 2 hour observation was up I had my IV removed and I was cleared to go home!!! Peace out Lemtrada! Time to make some new memories!

I am now in recovery, resting and taking care of myself so my immune system can come back to full health. For the next 4 years I’ll be having monthly blood and urine tests to monitor any side effects that may arise so they can be treated as soon as possible!

I would appreciate your continued prayers as I have so many dreams and goals to look forward to now that this season of treatment is behind me! Thanks for your continued support! I wish I could express my gratitude adequately!!!

I’m so excited for the future!! We have some big things planned coming months and years, which we’re excited to share as the time comes!! The best is yet to come!!! Right?

TREATMENT – MY LEMTRADA STORY – ROUND 2 | DAY 2

February 24, 2016

MULTIPLE SCLEROSIS

Another day down and only 1 more to go! If you missed yesterdays update, you can find it here!

I decided to support my good friend and fellow MSer (is that really what we’re calling ourselves. I need to think of something cooler), by wearing my I Am Strong t-shirt today! Sarah launched this campaign a couple months ago to encourage others to find their strength as well as to raise funds to pay off her own climbing medical bills (You can read her story and follow her journey here at sarahduron.com). Still shy of paying off her own bills, Sarah made a beautiful and selfless decision to help out another young woman with MS named Anna who’s MS is progressing quickly, making available treatments ineffective. In a last hope effort to find a solution, Anna is pursuing the possibility of a Stem Cell treatment, which cost thousands of dollars. All funds raised from the sale of t-shirts on Sarah’s website will go to helping Anna get the care she needs. Go buy one here!

Now for my infusion day 2!

5:00am – Got to sleep in a little later (1/2 hour) and after a quick shower with my IV wrapped in Saran Wrap, I packed my bag, drank my Vega Smoothie and we were on our way! We arrived in New West a little early so we grabbed a hot drink before heading to the clinic for day 2!

7:30am – The nurse flushed my IV line (left in from the day before) and all was well, so no poking around today! It’s the little things that make me happy! Once the line way cleaned and ready, I started an hour of steroids to combat any side effects that might come with the Lemtrada. I also look an anti-viral medication to fight off the viruses that my immune system no longer can, gravol, benydryl, reactine and zantac. All required to keep away side effects!

9:00am – As soon as a doctor is the building at 9am the Lemtrada can start. The gravol and benydryl knock me out, so I slept for a couple hours in the morning.

11:00am – A couple awesome young women from the college where I work gave me a gift bag, instructing me to open it when I was bored, so I did! I was blown away at what was inside! A few fabulous little gifts and stacks of letters and cards from the women at the college! So encouraging! The joy and life those words brought me is difficult to describe! It’s such an honour to be able to lead, pastor and teach them!

11:30am – I had a few minor side effects today. Floaters in my vision, a heavy chest when I breathe deep and a slight fever. No headache today though! Yay! The fever had subsided by the end of the day, so hoping all is well!

1:30pm – Lemtrada finished and now begins my 2 hours of observation to make sure I’m responding okay to everything. I finished off the afternoon playing cards with Clark! I won, obviously, and he continues to claim that it’s because I’m on performance enhancing drugs. Honestly, he’s been the most supportive, selfless husband through our whole marriage, but weeks like this I get to see his dedication to me in a whole new way. He’s one of kind!

3:30pm – Infusion finished. Observation period is over and by 3:45 we’re in the car on our way home!

Overall, I’m feeling pretty good and I’m in great spirits! The constant outpouring of love makes a difference. I feel so loved and cared for. From the bottom of my heart, thank you. Thank you for the comments, messages, gifts, cards, letters and everything else you’ve shared with our family this week. I am blown away. We are better in community. I’m honoured to be a part of such a strong one!

TREATMENT – MY LEMTRADA STORY – ROUND 2 | DAY 1

February 23, 2016

MULTIPLE SCLEROSIS

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!

DAY 1

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!