More Sammy News

So, lets see, I've had some questions about Sammy's treatment, so I thought I would answer those and give an update on how he is doing! =)  Sam started taking campath (or alemtuzumab) last Monday and was given an infusion for five days.  Each day he had to start by taking various over the counter and prescription medicines in the morning, and then Monday through Wednesday he was given an infusion for an hour of steroids.  After that first hour, he would then be given chemo for another four hours.  On Thursday and Friday he was only given chemo with no steroids beforehand.  Below are some of the questions I've been asked about his treatment:
1) Will he lose his hair?  Nope!  There are different kinds and different strengths of chemo.  While campath is a very strong chemotherapy treatment it doesn't cause people to lose their hair when being used for MS. 
2) Why would Sam sign up for this since no one could tell he had MS?  It was definitely a controversial decision (and a hard decision to make) that Sam would get this chemo treatment.  There were definitely people that thought he shouldn't do an experimental treatment, especially since his MS is not noticable to anyone on a day to day basis.  MS is a very unpredictable disease though.  There are people with MS that go decades without any problems, and then there are people that deal with their MS every couple months or even every single day!  Usually someone with a bad case of MS has to walk with a cane or is in a wheelchair, or possibly worse.  The treatment that Sam received last week has been announced in European journals as a possible "cure" for MS, which until now has been thought to be a disease that has no cure.  While the chemo treatment is still in the experimental phases, it has taken people that were completely bed ridden to now, that same person is winning European golf championships.
3)  So why didn't we wait to see if Sam got really bad to try this treatment?  Well, because in the past 15 years of research on this treatment, they've found it's a "cure" the earlier you do it.  Every year we would have waited to have the treatment, the chance of it being a "cure" for Sam would have gone down.  The treatment has not "cured" people that have had MS for a long time.  It has sometimes still helped these people, but its not been a cure by any means.
4) If this treatment is a "cure" for MS, why any hesitation about it at all?  Well, with any drug that isn't FDA approved, its not been around that long.  When Sam and I were talking to the doctor, they were comparing the known side effects with around 150 - 180 people worldwide that have had this treatment.  That's it.  They're not comparing it to thousands or even hundreds. So they really can't know all the side effects someone can have from this treatment, because its not been used as a treatment on anyone over 15 years ago.  That's why they call it a "cure," because some of the first people to take it haven't had problems for 15 years, but they don't know if it will last another 15 years or if it won't? 
Also, there are serious complications that can come from this treatment, like death.  There were two ways Sam could have died or had very serious complications last week just while receiving the infusion itself.  They have had people whose lungs have collapsed and others who have had heart attacks or anaphylactic (allergic) reactions to the medication.  That's one of the reasons he had to take so many pills before starting an infusion each day, because they've now come up with a combination of medicines they think should help people not have those side effects.  We were concerned about Sam last week because Thursday night he started having very strong chest pains, so they had to check him out thoroughly before he could continue with his last day of treatment on Friday.  Luckily, Sam ended up reacting very well to the chemo (thus far) and not having any of the short term side effects.  Besides a bad headache and insomnia (and then the chest pains), he did much better last week than many people on this treatment do!  So we were very thankful about that!
5) What are the potential longterm effects?  This is the reason we would have opted not to do this treatment.  Luckily, the majority of the known longterm effects are very treatable if caught early.  Sam will have monthly blood tests indefinitely to check and make sure that he's not coming down with one of these diseases.  Most of the diseases are autoimmune diseases like ITP or Graves disease, which if the normal person got this disease they would have it for life.  Luckily (with the exception of Graves disease), if Sam gets one of these diseases and it is caught early (through his blood tests or external symptoms) he should get rid of the disease permanently in three months! 
6) Can anyone with MS have this treatment?  No, since its not FDA approved there are only certain doctors that can get insurance companies to pay for this treatment.  We are VERY LUCKY that one of the only doctors in the USA being able to get this approved is in Knoxville.  Also, Sam had to pass certain physical aspects... he couldn't have things like heart disease, cancer, or blood disorders.  If you have those things you aren't eligible for this treatment.

Anyways, right now Sam has been feeling much better than expected.  He has been getting cabin fever this week since he has to be a hermit right now.  The main concern is him not being exposed to other people and the chance of catching any of these winter/flu/cold viruses going around.  For him a small cough could turn into pneumonia/shingles, etc... His immune system is at zero, but should build back up pretty quickly!  Thanks for the prayers!