I turned around a few times as I caned my way out the door of the brain centre. I was afraid I was being followed by the strange conversation. It was still there. Words of strange transplants floating through the air. I’m in a time warp. I reach the familiarity of the car – somehow that eases my troubled mind.
I get in, sit down, and strap on my seatbelt. Feeling slightly more secure, I speak as I briefly look back towards the building’s exit. She’s there. She’s standing in front of the brain centre’s entrance – her every movement triggering the automatic doors. Her eyes fixed on me – burning through me.
Weird. I’ve had some interesting conversations, but none like that. None that lingered in such a way.
One of the last things the doc said to me on my way out of the clinic office was stuff will start happening quickly. There will be a variety of people in contact with me in order to get the infusion process in place. There will be questions about finances and timelines. There will be a battery of blood tests, and heart monitoring.
Now that I’m in the car, and have time to my thoughts, I’m convinced I have nothing to lose. I’ve been on Copaxone for many years, and my injection sites are starting to show hints of damage. The MS that has laid claim to portions of my body is not backing down. I, like many others suffering through the same fate, want this to go away. Lemtrada just might provide that little glimmer of hope.
I look at the provided information package for the first time. No more skimming over the words. I open up the booklet – it’s a hard-covered box in book form that contains a series of small booklets inside. Each booklet is designed to inform the patient what to do prior to, between, and after each infusion.
What I am mostly interested in at this point – is what can I expect from taking Lemtrada – generic name alemtuzumab. What will this do for me? What will this do to me? Most importantly – will it work?
The drug is administered on two separate occasions that are separated by a year. The first round is five days of infusions performed over the course of one week. The first three days the infusion is preceded by a dose of steroids while the remaining two are just the drug itself. After a full year off there is three more days of infusions – all with steroids. The agreement that has to be made is that of monthly blood tests for four years that begin the month after the first round.
Lemtrada is a target specific drug that kills B and T cells. Basically, the thought is that those two cell types are flawed with someone who has MS, and those cells must be re-booted. It would be easier if humans were more like computers that are re-booted by simply pressing the on/off switch.
Once the drug is on board the B and T cells, referred collectively as lymphocytes, take a while to rebuild. The body is now depleted of an immune system for a short period of time. The B cells can take more than a year to replenish. There are dangers outlined in the literature, but those are not as highlighted as the benefits. Following the infusion, the immune system has been shocked and good health must be maintained by staying away from germs.
Staying away from germs is pretty easy for me. I figure if I just stay away from sick people that should be enough. However, the literature outlines in, great detail, what to stay away from. Simple things to avoid are mayonnaise, yogurt and unpasteurized honey. It’ll be a while before I have a medium rare steak or sushi.
I bore of reading the glossy material and just enjoy the rest of the drive home. I’m not 100 per cent convinced this is the right thing to do, but pretty close. After all, I’m tired of numb feet.
Once home the calls begin. I speak to my doctor about the procedure. I trust my doctor and highly value his opinion. He can’t see why I wouldn’t go through with the procedure. He has a couple of patients that have been through it and have seen positive results.
“What have you got to lose,” he said.
Right, I thought.
Then I received a phone call from a nurse who represented Lemtrada. She said something that stuck with me.
“By the end of the two years, you should be able to throw your cane away,” She said.
Yup, I’m in. I hate my cane.
On The Road With MS 