When you here those words from your doctor, you think... hmmmm this is not good.
We went in for our MRI follow up appointment this week. We've been anxious since the Doctors office called us back after the MRI suggestion Aaron get more solemedrol treatments in and have a visit with the doctor soon.
Back to square 1is a good way to sum up all that we discovered. The MRI showed a very large lesion on the brain and then another at different spot. The many exaberations that Aaron's has had since January are the evidence of whats been going on in his head. Not good. Proving the disease has found a way past the medication and is not working. In the words of his Doctor "Disastrous!" The obviously it didn't do as we had hoped and had quite the opposite effect.
So what does this all mean? A new start and search for help for Aaron.
The Doctor suggested, well pretty much said our next step is a drug called Tysabri. Very effective and has been around for about 10 years. It is a once a month infusion and doesn't have too many side effects. The problem, as we are finding all drugs have, is that it is connected to a rare brain infection that can kill you. Ya, I shifted in my seat when I heard that one. It's rare, but not rare enough that they watch you like a hawk to make sure you show no signs of this brain virus. Not what I wanted to hear. So what is this virus?
There is a virus called the JCV virus, named after a man who died from it. Nice. Anyways, we are all exposed to it and probably half the population has it. It is food bourne. It sits and hangs out in our kidneys. It does us no harm, until we have a weakened immune system. So people who have chemo, and other disease where the medication weakens that immune system increase their chances for problems. The JCV virus can end up in an Tysabri patients brain and start doing its damage when the immune system is weak. Tysabri is a drug that weakens the immune system, it does it so well that it allows for the MS to not hurt the brain, but increases the chance of the JCV virus to do its damage. The JCV virus does have to mutate and travel to the brain first, for it to cause brain damage. But if it does, and once this virus is in the brain it then causes the brain infection PML. This is not good. It has no cure and about 25% of those who have it die. Those who don't are disabled and very sick. There is not cure to PML.
So with this new knowledge I started to ask a few questions. What types of people have generally got PML. The doctor said it was found most often in the european nations. Why? Because people there were skinny. We both looked at Aaron. My thought... I need to fatten that boy up. We went ahead and looked at his blood tests and guess what!? Aaron does have the virus, like half the population, but he does have it hanging out somewhere in him. Ready to mutate and travel to his brain. I know I'm being silly, but you sit and listen to a doctor say that a drug he is putting your sweetheart on is suppose to help one thing, but has a risk of killing him! You'd be a little nervous too.
Anyways, he should be fine and we are going to go ahead and start the drug here in the next few weeks once we get approved by insurance and hopefully get on some financial help plans to pay for it. The drug itself $5500 a month! Of course we won't pay that, but it still would be killer if we didn't get financial help. SO fingers crossed!!!
I did ask the Doctor why the first drug Tecfidera didn't work. I asked him if Aaron maybe has a more aggressive MS. His response was of course not what we wanted to hear. It looks as though at this point it is a lot more aggressive than we thought. Which is more typical in a male with MS. More women have MS, but men who have it, see a more aggressive side to it, since they don't have the hormones like women. But, we can treat it he thinks with these typical medications. If not, then we will jump on something more intense. We pray we never get there. It didn't sound pleasant.
It was hard to sit there holding our 2 week old baby and listening to the doctor say, we obvisouly need to get you better. You've go this young family and a whole future ahead. Why was that hard to hear? Because for a year and half I thought we were already getting him better. Here we sit and he just told us that the medication he was just on was DISASTROUS and not doing what we had hoped.
So onto a new chapter. There is great hope that this drug will do what we need. The first 6 months are vital in watching how Aaron responds to the drug and treatment style. We have to watch for allergic reactions, PML signs and side effects. I will go to his first treatment, so that I can get educated on what to look for and how to keep him safe.
We just hope and pray this is what we are looking for. That Aaron will be healthy finally and we can move away from the fear of MS taking over our lives. As his doctor said we want to make MS not a disease that will disable, but just a pain in the butt every once in awhile. SO here's to a pain in the butt.
