HSCT Acceptance in Chicago with Northwestern

So after a long application process with Northwestern University in Chicago, I was offered a chance to fly up and meet with Dr. Richard Burt from Northwestern University and Dr. Blabanov from Rush University. These doctors have been working on a trial for people with multiple sclerosis for years now and it is starting the 3rd and final stage. This therapy is called a HSCT transplant.  What happens is they harvest millions of your own stem cells and then destroy your old immune system with chemotherapy.  Afterwards they return the stem cells to your body and grow a brand new immune system free of multiple sclerosis. It sounds crazy right? Well so far the study is 90% effective in stopping the progression of the disease. This is an incredible statistic for a disease that has no cure! Many people who have had this treatment already swear this is the cure but until phase III of the trial is finished and this is FDA approved they don’t want to use the word “cure.”

Anyway, waiting for FDA approval is time I don’t have. This isn’t scheduled to happen until 2022 or 2023. My disease has proven to be very aggressive and by then I may no longer be walking around or riding a bike. Since I’ve had MS, I’ve failed multiple medications and have had 26 lesions on my brain and several on my spine. The fact I’m still walking and able to work and provide for my family, I feel is miraculous and I give all credit to God in preserving me and helping me know how to fight this disease as well as I have.  The medications I’ve been on are basically just band-aids that slow the progression of the disease, not stop it.

Since being diagnosed back in 2011, I have been on meds that suppress my immune system, so it doesn’t get too strong and attack my brain or spine. To further suppress my immune system I have tried to bike, swim, or run to the point that my body is always recovering and trying to heal. It seems most my attacks have happened when I have let up on my workouts. It was getting to the point where I was totally exhausted but didn’t know how long I could train at this level.  Anyway, I’ll get more into the steps that got me to this point in future entries seeing I’m going to have more down time coming up in the hospital then I’m going to know what to do with.

So back to Chicago. I received the invite to fly up and so I got a plane ticket and also tickets for my wife Liz and daughter Olivia. In Chicago, we were able to stay with my sister Laurie and her family. They were the greatest hosts! They treated us to a day at the Field Museum, Lincoln Park Zoo, great Chicago restaurants, and even bought us tickets to a Chicago Bulls game while they babysat Olivia! It’s rare when we can get out on a good date night so this was a priceless gift.

Day One: The first day of business was an MRI of my brain and cervical spine.  Luckily, they gave me some good drugs to keep me from panicking in the machine! I had a cold so it was still hard laying still in the machine without being able to cough. Luckily, the drugs kicked in and I was able to fall asleep for most of the MRI. They gave us the MRI results and we were able to look at it that night and notice a few new lesions. (It’s so scary seeing this on your brain because while I was thinking I was doing pretty well, the disease is still progressing.)

The last attack has been pretty scary and was the first attack that has threatened my ability to walk, ride, and do all the things that I love to do. My whole left side has felt weak and tingly and when I run, I feel clumsy and when I ride, I have to think about pulling my left leg up on the cranks when I pedal.

Day Two : This was the big day of meeting with the doctors.  First, I met with Dr. Burt at Northwestern University. Dr. Burt is definitely all business and to the point, which is good because he is a very busy man. He wanted to know the story of my disease so far and especially about the last 12 months and the medications that I have failed. He also tested some of my motor skills. Though I can walk any distance no problem,  if I was ever pulled over, I would fail the DWI test because I have no balance and can’t walk a straight line to save my life!

After my evaluation and seeing the results of my MRI’S, he said that he felt I needed to be treated off study because my last 2 attacks were 14 months apart and needed to be in the same year.  Being treated off study was actually a huge relief because being treated “on study” leaves you with a 50% chance of being in the control group, which doesn’t receive the actual therapy, but instead stays on the same drugs I’ve been failing.  The results are put against those that receive treatment. Hearing this was awesome, but we still had one doctor to see and the two don’t talk to each other until after both have met with the patient, so that their opinions are not influenced by the other.

After Dr. Burt’s appointment, we headed over to Rush University to meet with Dr. Blabanov. This doctor specializes in MS, while Dr. Burt specializes in all autoimmune diseases. Dr. Blabanov was really cool. He is Russian, so it was fun just hearing his accent. At his office, they tested my eyes and more walking and function tests.

After the tests, he asked us what Dr. Burt had recommended, and I said he wanted to do it “off study on a compassionate basis.” At this point, he said that’s what he thought he’d say because he completely agreed.  I remember looking at Liz and I could tell we were both ready to burst! When we walked out of his office and into the hall, there were tears of joy from both of us. Since my diagnosis there have been tears, but never of joy.

Suddenly for the first time since my diagnosis, there was a real hope of not someday ending up in a wheelchair or being crippled some other way. I’ve always felt like I have been lucky with this disease and been able to keep most of my strength  (though there have been many horrible days of fatigue! ).  I feel very fortunate that I can be part of what I feel is the cure for MS. Even though I’m off study they will still use my data to help on getting this procedure approved. For the next five years, I still have to come to Chicago for check ups and have them test my progress.

Also, I’ve been asked to get off the disease modifying medications that I had been on for four years.  I started with Copaxone when I was diagnosed in 2011.  I then moved on to Tecfidera in 2013.  For the first time since being diagnosed, I am no longer being protected by these drugs, because I have to have them flushed out of my body before starting treatment.  It’s kind of scary because there has always been a feeling of assurance every time I take them that I have something in me to help fight this disease (even though there were a lot of side effects that occurred that were not fun).  If this treatment goes as it is supposed to, I will not have to be on these drugs ever again.

The next big hurdle was getting insurance approval, because even though the FDA has approved the trials, they still haven’t approved this for common practice, so insurance loves to use that as an excuse to not cover it. Fortunately, I have BCBS Federal which is the “holy grail” of insurances  (so I’ve been told) and they have covered every case up to date. I think they are realizing that one procedure that costs $150,000-$300,000 is much better than years of paying $55,000 just for one med per year, plus all the hospital visits that the person ends up having because the drugs are not too effective.

I’m not going to get into the trip home much because it was a nightmare (thanks to snow in El Paso), our plane turning back to Dallas,  getting stuck in Dallas all day, and finally getting home late at night when we left Chicago at 5am!

Really it was an amazing trip and we are thrilled to be able to return to Chicago so I can get this done and get on with my life! I also want to thank all of our friends, family, coworkers, cycling teammates, and everyone else that has offered their support and prayers!  They are being answered and we are so grateful for everything!

More Chicago pics….

Lincoln Park Zoo

Field Museum