Who am I and what the heck is HSCT?

My name is Laurie Castaneda.  I am 49 years old, and I  live in Southern California.  I am a Lawyer, a wife, a sister, a daughter and a friend.  Oh yeah and I have MS.  What is MS?  Multiple Sclerosis is a disease of the central nervous system, where the immune system starts attacking healthy cells.  This can result in varying and wide ranging symptoms including but not limited to, double vision, blindness, balance issues, numbness and tingling in various parts of the body, muscle weakness and  impaired mobility including paralysis.  There is no cure.

In most people, the immune system operates to protect the body from disease.  When you are exposed to germs, your immune system  attacks those germs and keeps you from getting sick.  In people with MS, the immune system shifts into overdrive and starts attacking healthy cells.

MS can cause many symptoms, and varying levels of disability.  This happens because once MS is active, the immune system targets the myelin in our brain.  Myelin is a protective fatty layer insulating the nerves in our body.  Much like the plastic coating on the electrical wires in our homes, myelin protects the nerves in our brain and makes it easier for the brains messages to transmit.  In people with MS, that protective coating is stripped away leaving the nerves exposed.  When this happens, it is difficult for the brains message to move along the nerves to the intended destination.

When the myelin is destroyed it is more difficult for the brains signal to reach its destination

In the beginning, the body is able to adapt, and the messages will “jump” the gap in the myelin sheath.  As time goes on,  the gaps can get bigger or scar over.  That is when it becomes increasingly difficult for the brains message to move across the nerves in the body.  That is when the problems start.

There are different types of Multiple Sclerosis. I have what is referred to as Relapsing Remitting Multiple Sclerosis.  I  have “attacks” or “relapses” and different symptoms will present themselves, but eventually things will return to “normal”.   And while the damage done to the brain during a relapse is permanent, after a period of time, the body adapts and messages find a way to make it to their destination.  This is the period called remission, when a person with MS has no symptoms at all.  This remission period can last months or even years.

The first hint that there was a MonSter in my brain was in 1993.  I had just passed the California Bar Exam, and started working as a lawyer.  One saturday,  I woke up and saw my four cats at the foot of my bed.  Which was interesting because……I ONLY HAD TWO CATS!!!  I didn’t understand what was going on.  What was wrong with my eyes?

So I went to the eye doctor.  As I sat in the chair the doctor examined me.  He took a bright light, shined it into my eye and had a look.  Then he brought in another doctor , and another to have a look.  I was pretty popular at the eye doctors office that day.  They told me I had optic neuritis and should see a neurologist.  So I did.

The neurologist did some eye tests, pricked me with a pin and sent me for an MRI of the brain.  The results showed I had a lesion on my brainstem!  I asked the doctor what this meant.  His response to me was that it proved I wasn’t faking!  WHAT?!  Time for a new doctor.  I finally found a great doctor and he told me that while it was possible I had MS, it could not be confirmed at that time.  He told me that my symptoms would get better over time, and that I might never have another issue.  So I went on my merry way.

Fast forward about 7 or 8 years.  At this point,  I had almost forgotten about my previous experience with neurologists and that weird thing called MS.   It was Labor Day weekend and my allergies were really acting up.  My eyes were itchy and I was rubbing them like crazy.  As I was rubbing my eyes, I noticed one eye seemed a little blurry.  I started wondering what I had done.  Had I scratched my retina?  Of course it was a three day weekend and I couldn’t get in to see a Dr. until after Labor Day.  By the time Tuesday rolled around, I was completely blind in one eye.  Still convinced I had done this by scratching my eye, I again went to the eye doctor.

As I sat in the chair, I was asked to cover one eye and read the chart.  When I told the nurse that I could not see anything she gave me a funny look, but eventually got the doctor.  He came in, looked at my eye with the bright light again.  He asked me if I had ever had any previous vision problem.  I mentioned  that the bout of double vision 7 or 8 years ago.  That’s when he got up off his chair and closed the door.  Holy Crap!  What was going on.  He told me that it was possible I had MS.  He said I needed to see a neurologist.

It had been so long since I had any problem I had almost forgotten about this possibility.  I was so scarred.  I made an appointment with a new neurologist and  I got another MRI.  The results showed more lesions on my brain.  The diagnosis?  I had Multiple Sclerosis!  I was sobbing and in a panic.  I was told there was NO CURE.  There were medications that  could slow down the disease and delay the progression of disability but that was it.  Oh and by the way those medicines might not even work.

So I got started on my first drug Rebif.  Rebif is an interferon drug that is injected under the skin three times a week.  So now I was going to have to stick myself with a needle?  Yup, thats what I had to do.  The drug came with a great support team.  A nurse came to my house and showed me how to use their auto injector and take the medicine.  She would also call me from time to time to see how I was doing and answer any questions.  That was nice but I had an incurable disease and this may or may not work.  I started to get depressed.

I really had no Idea that I was even depressed.  I went to the doctor.  He would examine me and ask me how I was doing.  “Fine” I would say.  He would ask me if I was feeling depressed.  “I take my medicine, thats pretty much all I can do.  There is no cure so life goes on”.  Those were pretty much my responses all the time.  I stopped going out, my house was a mess and I could hardly get out of bed in the morning.  I felt awful.  This went on for almost a year.

Then one day I ran into an old boyfriend.  He showed up one day as a witness on a case in my court.  I hadn’t seen him in over 15 years.  We talked a bit but then I had to get back to work.  He called and left a message later that day.  He said he wanted to be friends.  The next day was amazing!  I woke up early, got ready for work and felt fantastic!  I cleaned up my house and was ready to take on the world.  It was like the fog lifted and I was my old self again.  I did start dating that guy again and I eventually married him.  I tell him how he saved my life.  He likes to remind me of that from time to time.

Yeah, I married that guy!

While we were dating, I told him about my diagnosis of MS.  He got very quiet and got a bit choked up.  He asked, “There is no cure right?”  I told him he was right but that I felt great and had not had any problems since my diagnosis.  As more time passed I did have some little problems that came and went.  No big deal.  The doctors even told me I had a “mild” case of MS, whatever that means.

But then about two years ago, things started to slowly go down hill.  I had been very active.  I worked out, went hiking, even climbed mountains.  I used to walk 3 miles everyday at noon.  All of a sudden half way into my walk, I started to limp.  By the time I made it back to the office I was dragging my leg.  I looked like some kind of zombie.  When I went to change my shoes, I couldn’t move my foot at all!  It was paralyzed.  I was so scarred.  Something was different.  But what could I do?

My days of climbing mountains were coming to an end.

The doctor said my medication wasn’t working and I needed to try something new.  I decided to go on a new oral medication.  No needles!  Yippee!  I take this new medicine twice a day everyday.  There are some side effects but for me they have been pretty minor.  I have not improved and feel like I am still on a downward spiral.  It was suggested I try another  injectable drug, but I wasn’t ready to give up on this new pill just yet so I continued.

Then I stumbled onto something I had read about a few years ago.    Hematopoietic stem cell transplantation (HSCT).  This was a procedure where a patients own stem cells were harvested from their bone marrow and then intensive chemotherapy is administered to kill off the immune system.  After the immune system is depleted, the patients own stem cells are re-infused to help build a new immune system free of MS (hopefully).  I had read about it but it was not available in the United States except through clinical trials.  So I forgot about it until about a year and a half ago I stumbled across something on Facebook.

There was a group on Facebook.  It was a private group talking about this procedure and places where it was done all over the world.  I joined the group and started to do my research.  I learned that this procedure was invented to treat Leukemia, and been around for many many years.  It is done in the United States everyday but not for MS.

About 15 years ago doctors started to notice that some cancer patients who also had MS showed no sign of it after this treatment.  Clinics and hospitals all over the world started to perform this procedure for MS patients.  They were having amazing results.  But in the United States we have this thing called the FDA.  Although this medicine has been around for years, this was an “off label” use.  Under the FDA guidelines, there had to be trials to determine the efficacy of HSCT for treatment of MS.

And so the trials began.  Phase one started and concluded.  Phase two started and concluded.  Phase three is still underway.  Unfortunately, I don’t qualify for this study.  The candidates they are looking for have to be early on in the disease cycle, have to fail two drugs, and have to have active lesions in their brain.   Technically I have only failed one drug,  and sadly I do not have active lesions.  So the US trial was not for me.  Thats ok.  It was patient funded at about $150,000 to $250,000 per person and insurance won’t cover it!

Thats when I started to look overseas.  I saw some posts in this Facebook group from people who had already had the procedure and were having great results.  One woman from Australia who was treated in Russia, even had her story featured on 60 Minutes Australia! When I saw the post that the story was about to air, I knew I had to act fast.  The  hospital would surely be inundated with requests for treatment.  So I sent an email with my medical history.  They wanted me to get some more recent tests before accepting me.

Unfortunately before I could do that, the 60 minutes story aired,  and they got hundreds of requests for treatment.  I was accepted for treatment in early summer of 2014, but my treatment would not be until May of 2015.  A few months later, I got another email from the hospital informing me that treatment of international patients had to be cut back and my admission would be pushed back to September 2015.  I was disappointed but still believed this was my only hope to lead a normal life.

Everything happens for a reason.  Although I was sad that my admission date had been pushed back, I was prepared to wait.  Then in August my husband was diagnosed with colon cancer.  He had to be hospitalized,  had surgery, radiation and chemotherapy.  If I had continued with my original date, I would be gone while he was being treated.  So actually the timing turned out to be perfect or so I thought.

Although my husband finished up his chemotherapy in June, recent tests show new tumors.  So he won’t be going with me after all.  I had thought of trying to postpone my trip but he was absolutely opposed to it.  So I forge ahead and get ready for my Russian adventure. I told him that we are both going to be fine and that 2016 will surely be our year!  By then we will both be healthy and living our dreams!