So I've obviously been getting excited about my upcoming new treatment but what exactly is it?
I will be starting Lemtrada (Altemtuzumab) on 27th February. For this I will be an inpatient at Charing Cross Hospital for 5 days so I can be closely monitored and REST. Its been a bit of a slog to get here but I am feeling positive that this could really work for me.
What is it? If you ask Chloe, my MS is a goblin in my brain that changes around all of the signposts so the nerve signals get lost. The new medication is going to lock him up in a cell so he can't interfere anymore.
If you ask Callum, My immune system is made up of robots and certain types of robot have been programmed with the wrong code and are attacking my nerve cells. This new medication is going to reprogramme the robots with the correct code so they stop attacking my nerves.
What it really is. Our immune system is made up of leukocytes (white blood cells). There are several types of leukocytes all with differing roles. The T and B cells are the ones which pass through the blood brain barrier and, in my case, have been wrongly attacking my nerve cells as they think they are foreign. The Lemtrada is going to kill off just the T and B cells and prompt my body to regenerate them but correctly from the cells that do work. In effect rebooting my immune system and making it better.
How is it administered?
As you've probably guessed this is a type of chemotherapy and in terms of treatment is a bit aggressive, hence the inpatient stay at hospital. I will be having a multitude of medications so will be long and tiring days again another reason not to travel backwards and forwards to London daily.
Every morning I will be having blood tests, followed by IV steroids for the first 3 days, this is to counteract the effects of the Lemtrada. I will also be having antihistamines as the treatment will cause a rash and hopefully this will ease it off. Then I will be having the Lemtrada IV over 4 hours every day for 5 days.
Obviously, as with all treatments, there are potential side effects and it can cause other medical issues in the future. These could be Thyroid issues - which can be medicated, Immune Throbocytopenic Purpura (a blood clotting issue) - again this can be medicated and Kidney disorders - again these can be managed. As I'm sure you would expect Daryl and I have looked into these extensively and the benefits outweigh the risks especially as they can all be treated and managed way better than untreated MS!!!!
Why did I chose it?
This was not an easy decision to make in any shape or form. In fact it has taken since June 2016 to finally reach this point!
I was on Tysabri which was working really well for me. It reduced my fatigue and pain levels massively and for that I will be forever grateful. But I am JC Virus positive which puts me at high risk of developing a potentially deadly disease. Due to this I had regular MRI's and if anything was picked up or if I had new symptoms I would have to stop the medication for 3 months, have repeated MRI's and Lumbar Punctures. I have had 2 Lumbar Punctures and have had awful reactions everytime! This procedure just started to outweigh the benefits. Especially when my Consultant said that it all depends on who reads the MRI scan and if they are not happy then the whole procedure is triggered.
So we started looking at alternatives. The Lemtrada has a 70% success rate at stopping MS in it's tracks and 30% success rate at inproving current symptoms! These are the best stats I've had in any treatment. That along with the side effects which can be treated as opposed to the Tysabri one which can't really. We read lots of studies and research which all support that the side effects do not occur that often.
I'll be honest I did have doubts, purely on the logistics and effects on the family. I'd be away for 5 days and my children are 6 and 9 so still fairly young and I have worried about this. Chloe has been a little upset but I have given her important jobs like making sure Daddy eats dinners and looking after Scrumpy as he really snuggles her. This seems to have helped. I worried about Daryl having to take tiime off to a) look after the children whilst I am in hospital and b) me as well when I get out. I worried about taking time off work as I have arranged 3 weeks off and hope this will be enough but I just don't know how my recovery will go. And obviously I hate being away from my family and friends and will miss everyone like crazy. But luckily I will have Wifi and Skype and Facetime!
What happens after?
After the treatment I will have antivirals for a period of time to ward off any nasty infections. But I will be susceptible to infections especially urine and chest so I need to be better at looking after myself and getting checked out earlier. Yes Daryl I need to start listening to you! But you will also have to be blunt with me too!
I also have signed up to having monthly blood and urine tests for the next 5 years, so they can closely monitor for any of the conditions I mentioned before as they will show up in these tests before I feel any effects.
I will be on a "diet" or "advised eating plan" for a while after to prevent getting Listeria as this is particularly risky during this time. To be honest it's just like the advice you get when pregnant. Make sure all salad and fruit is fresh and washed, no raw or uncooked meats or fish etc etc.
Then in 12 months I will be admitted for 3 more days to "Top-Up" the treatment. Then for most people this is all they need! However, if it is needed then these yearly 3 day dosages can be used again. Hopefully I won't though.
I am under NO illusion that this could well be a bumpy ride. I am expecting the horrid rash during the hospital stay, the headache from hell but can be eased with Paracetmol and drinking lots. I will be beyond exhausted probably too. I may well get times when things flare up again but it's all part of it. It's nothing I can't deal with with the support of my family.
THE MOST AMAZING FAMILY IN THE WHOLE WORLD!
I know that this is scary, emotional and horrible time for them as they can't do anything except help with arrangements, visits, transport etc. But without them I would not be doing this and finally kicking this thing in the butt!
Emotionally this has been quite a rollercoater for me. I am very excited to finally be getting on with this. I am nervous of what is to happen, I am scared as I don't know how my body will react to this. I am worried I am putting everyone out and the effect on Callum and Chloe. I am upset that I will be in hospital for my birthday - but also see this as a positive that I am starting a new year of my life and getting a new and working immune system. I am hoping to be well enough to help Chloe celebrate her birthday when I get out. But I am determined to get better and get on and be an awesome wife, mother, daughter, sister and friend!
This is the driving force behind all this, the pig-headedness, stubborness and need to do something positive for me and my family and for our future so we can make plans for amazing adventures.
I plan on writing this blog while I am in hospital to log my personal journey. This is for a few reasons, for me to look back on, for my children to read at some point should they want to and for my friends and family to follow with me should they want.
Please feel free to comment or ask any questions, I am more than happy to answer honestly. This has been my philosophy since I "came out" with my MS to be honest and tell people what it's like for me.
I know hashtags are everywhere but I have adopted another 'Lemmy's' one.