MS Let it go – my HSCT journey in Moscow

After checking into the hospital things got rolling right away.  One important thing you need to know is just because I am here in Russia does not mean that I will be going through this treatment.  Treatment  is the hope and goal but nothing is guaranteed.  Dr. Federenko is very thorough and that is a good thing.  Prior to acceptance each patient is put through a series of medical tests that cover everything from head to toe!

As soon as I got settled in my room a nurse came to take an ACG test.  That is the same as what we in the United States refer to as and EEG except it is a little different here.  I was expecting to have little stickers placed on my chest, my sides, my arms and my legs.  Here the machine uses little metal suction cups.  They do however still use that cold awful goop used to get a good conduction.  This test was painless and very quick.  I did have little suction cup marks on me for the rest of the day though.

The next day things really ramped into high gear.  I was told not to eat or drink anything in the morning as testing would start early.  After I got up and ready,  I was taken over to give blood for many tests that would be run.  I was not excited about this, as I am usually one who has a difficult time finding a good vein.  I had anticipated this and drank a lot of water the prior day in hopes of having a good result for the blood tests.  The nurse entered and placed the tourniquet on my arm and I looked away.  Much to my surprise, she got the vein on the first try and took her samples.  It was all done very quickly.  I like this nurse!

After blood tests, I was whisked away for a series of ultrasound tests.  They did ultrasounds of the chest (heart), abdomen, pelvis, and legs (veins).  You would have thought this could have all been done in one shot and finished.  Unfortunately that was not the case as each of these tests was in a different location run by different technicians.  Thankfully I had someone from the medical staff with me at all of these tests or I would have got lost for sure.  This facility is huge and consists of a many buildings all of which are  connected by an underground labyrinth of tunnels.  I would never have found my way back!

In addition to the ultrasounds on day two I also had a chest x-ray, sinus x-ray as well as and MRI of the brain, cervical spine and thoracic spine.  It was amazing how many tests they did in one day.  It would have taken months to get all of these tests done back home!  Not to mention the fact that you would probably have to fight tooth and nail with your doctor to get them approved.  And even at that point it would cost thousands upon thousands of dollars.  Here is was $1500.00.  Even if one was not approved for treatment, the tests make the trip worthwhile.  But we are not done.

After day three, Anastasia told me that I could leave the hospital for the night and stay with my sister but would have to be back y 11:00 in the morning to finish up my testing.  Some of my new found friends and I had been talking about doing a jailbreak to get dinner and skip the hospital food for the day as we heard they were serving tongue for dinner.  I jumped at the opportunity to get out and have a nice dinner and stay with my sister.  Sadly we miscalculated the meals, and tongue was served for lunch that day not dinner, and yes I did eat it.  Tastes like beef.

After a lovely dinner at a local restaurant walking distance from the hospital that served food from Uzbekistan.  The food was great.  The company was fantastic and we had a really nice evening getting to know our new friends.  But jet lag set in and I was fading fast.  by 8:00 I was ready to take a nap right in the restaurant booth.  We made our way back to the hotel and I was out within 5 minutes.  Sadly that resulted in me being wide awake up at 2 a.m.   But that actually turned out to be a good thing because I was able to see that Anastasia had sent me a text informing me I needed to be back by 9 in the morning rather than  11 and that I should not eat breakfast either.

I got back the hospital a little early the next morning and they were ready for me at 9:00 sharp.  On this last day of testing, I had a breathing test and an eye exam.  The breathing test was pretty simple.  Just breathe into the tube.  The eye exam was pretty easy as well.  Just look at the blinding light and they look into the eye.  Interesting thing, after we finished, she hand wrote her results right there to give to the nurse to take with us.  That would never happen back home!

After a patient finishes all the testing, its time to meet with Dr. Federenko to go over the results and discuss whether you are a good candidate for HSCT.  The decision is based on your test results and disease morphology.  First of all, I passed all of the tests, so I was healthy enough to endure this procedure.  The question now was whether or not HSCT would be beneficial for me.  I was a little concerned as I have had MS for probably 22 years.  Although I wasn’t diagnosed until 2001, I did have symptoms back in 1993.

The Doctor did talk about the fact that I had had this MonSter for a long time, but some new information in the tests combined with my long disease history actually made me a good candidate.  The MRI here showed I had 12-15 lesions on my brain.  What I didn’t know was that it also showed I had two lesions on my thoracic spine.  This likely explains why I have had problems with left leg weakness and foot drop.  But those two things are what make me a good candidate.  So it was agreed this is a good treatment for me and the Doctor thinks it will absolutely be successful to stop the disease progression.  I’m so happy I could cry!

So tomorrow we start treatment!  The first four days will consist of IV steroids and twice nightly injections of medication to stimulate my stem cells to leave the bone marrow, pass  through my bones and into my bloodstream so they can be collected prior to chemotherapy.  I’m a little nervous but also hugely excited and ready to LET IT GO!

Welcome to Moscow!  We have arrived!  Actually, we got here on Monday the 28th of September.  Our flight, or should I say flights were great.  We left LAX in the early morning hours and flew to Houston, where we caught a direct flight into Moscow on Singapore Airlines.  Both flights were very nice but I must say, I really love the attention you get on Singapore Air.  The food, snacks and beverages  seem never ending on that airline.

We arrived in Moscow at around 1:30 in the afternoon and made our way to immigration.  By the time we found the proper area, there was a very large crowd in front of us.  In fact, we were the last people in that line.  Thankfully a woman who worked at the airport saw us and asked if we were with the big group.  When we said, “No”, she pulled us out of line and led us around the corner to another area with no line.  We were indeed fortunate.  If we had stayed in the first line, we would have been for an hour at least.

After immigration we passed through customs without even stopping,  and met my driver Alexey, who was waiting for us.  Alexey was great.   On our way  to the hotel he asked if we would like to see some of the sights in Moscow and of course we said yes.  He drove us past Red Square where we saw the Kremlin and St. Basils Cathedral.  All I can say is the entire complex is enormous!

After our quick sightseeing tour of the city we arrived at our hotel and got settled in for the night.  I had to be at the hospital the next afternoon,  so there wasn’t much time to see the city.  We did manage to  explore the area and shops near our hotel.  Most importantly we had to find a trolly stop nearby that would take my sister to the hospital each day to visit me.  As it turns out the stop is very near the hotel and as long as she gets on the return trolly before dark there should be no problem.

On Tuesday, we arrived at the hospital.  This place looks like a fortress.  It is surrounded by a wrought iron fencing and you enter through a gate which is manned by uniformed guards.   As we were dropped off outside the gate, I proceeded inside the little building to check in.  I didn’t have much luck at first since I speak no Russian and the lady behind the desk spoke no english.  Finally I handed over my passport.  After  the she typed something into the computer she had a conversation with the girl next to her who replied, “Anastasia” to which I replied, “Yes!  Anastasia!”  Within a few minutes my doctors assistant,  Anastasia came to get me.  I recognized her immediately.  She greeted me with a big hug and escorted  me into the hospital complex.

We were taken up to the second floor where my room is located.  This is the room I will have during the testing process and possibly even through chemotherapy.  At the point when I receive my stem cells back, I will be moved up to the third floor where the isolation rooms are located.  My current room is small but has everything I need.  I have a bed, a table, closet, microwave, refrigerator and water kettle.  Oh yes I also have my own bathroom!

There will be a few days of medical tests prior to being officially accepted into this program.  This process will start tomorrow.  For now, I have settled in and am getting ready to start the testing process!  I’ll let you know how it goes…….

 

I am officially drug free.  Over the years, I have been on a steady regime of different drugs to slow the progression of my disease.  Notice I said slow the progression, not cure.  There was no cure offered.  The funny thing I have come to learn is, even with the drugs available, scientists really don’t know how they work to help stop relapses in MS patients and can’t prove that they actually slow the progression of this disease.  So good riddance to all the drugs and drug companies who peddle them.  I am off on a journey to hopefully stop this dreaded disease and if I am successful, I won’t need them anymore.  But there was a time I did or at least thought I did.

When I was first diagnosed with MS, there were not a lot of treatment options.  There were basically three drugs being used to “treat” Relapsing Remitting Multiple Sclerosis and none of them were very pleasant.  In fact all three of them were injection based medications.  Two were subcutaneous injections and one was intramuscular.  There was no way I could see myself being able to inject a drug deep into my muscles.  Thankfully I did not have to.

I was given the “latest and greatest” option Rebif.  Rebif is an interferon based drug given subcutaneously (under the skin)  three times a week.  I was told it would help to “manage my disease.  It would not cure me,  but would hopefully slow down the progression of disability.  Given the limited options, I really had no choice.  I either took the drug and hoped to slow this disease, or I did nothing.  I did not see doing nothing as an option.

I really wasn’t sure I would be able to “stick” myself.  Because the drug companies want you to take their drugs, they make it easy for you.  This company has an army of nurses they dispatch to your house to teach you how to take their medication.  In my case, the nurse even walked me down the street to the drug store to purchase some Tylenol to take prior to my first injection to help with any side effects.

When we got back to my house, she had me practice jabbing an orange with the syringe.  I really was terrible at it and wanted to give up.  It turns out, I was not alone because the drug company had developed an auto injector to help people more easily take this medication.  You simply place the syringe inside the device and remove the cap.  Place the tube on your skin and push the button.

The auto injector seemed simple enough, but it was not without its drawbacks. It was automatic but, you could not adjust the flow of the medication.  This particular medication has a tendency to burn when you take it fast.  I later learned that if I just jabbed myself with the syringe, I could dispense the drug as fast or slow as I wanted.  So after years of taking this medication with the auto injector, I did learn how to “stick” myself.

It happened one night when I did not have my auto injector with me.    I now had to decide if I was going to take my medication the old fashioned way or skip it completely.   I took out the syringe and starred at it.  I choose to skip it for the night.  However, when   I went to put the cap back on it fell on the floor!  I now had two options, 1) I could  suck it up and stick myself or 2) I could throw out the medication.  Since this stuff was very, and I do mean very expensive, (at $50,000 per year), I opted not to waste it.  After I got used to doing this it really wasn’t a big deal but it did take years for me to get there.

After years of taking this medication, I started to have relapses.  I went to my neurologist and was tested for possible antibody development against this drug.  Sure enough, I had developed antibodies against it and it was not working for me.  Thankfully, in the years since I was diagnosed, there were many new options on the market.  One was an oral medication.  I was thrilled at the prospect of not having to use a needle and did my research.  I was given a choice and I chose Techfidera.

Three years ago I started taking Techfidera.  This is a pill and I took it twice a day.  Seems simple enough right?  You would think that the girl who used to have to stab herself with a needle three times a week would be vigilant about taking this little pill twice a day.  Well I’m here to tell you that it really is easy to forget.  Again, the drug company has anticipated this problem and came to the rescue.  They give you a pill box with 14 slots. It is marked for each day of the week and has two slots for each day.  This box is designed to help you remember if you have taken your pills and it is solid so no light gets in.  Light is bad when it comes to Techfidera as it will ruin this medication.

I have to say, it really was liberating not having to stick myself all the time and I really was excited for this new therapy.  It did however have some issues.  I was told to expect things like flushing, bowel issues and vomiting.  Fun right?  I really didn’t have any issues at first, and even when I did get sick (and I did get very very sick to my stomach) those episodes were rare.  But this drug like the others was designed to slow the progression of the disease not cure me.  And like all the other drugs, there really is NO PROOF that it actually works!

HSCT is the only scientifically proven treatment to stop Multiple Sclerosis in its tracks.  I wish it was available here in the United States outside of clinical trials but it’s not.  So now I am just two weeks from my HSCT adventure which I hope will give me a new chance at life.  As of today, I have completely stopped taking any MS medications.  I don’t miss them and I hope to never see them again.

 

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.

 

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.

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?

 

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!