One Year Update



One year ago today: Chris getting his new stem cells.



Today marks one year since Chris recieved his new stem cells (what we consider his new birthday).  To mark the occassion, Chris spent the day at the hospital yesterday having a series of tests completed for the research study.

These were the same tests that Chris had back in June. This included math tests, eye tests, walking tests, and of course a full neurological exam.

It was nothing but great news. First, they were able to tell us that Chris' MRI shows no signs of new disease activity. If you compare this to the previous year, where Chris had a huge decline, this is unbelievable. They aren't able to determine yet if Chris has had a reduction in lesions. The MRS scan that Chris had in July will be used to track the size of Chris' lesions, and unfortunately Chris will not have his second scan until next July.

However, while we don't have a scan that proves that Chris is improving, Chris has seen huge improvements in his EDSS Score.

The Expanded Disability Status Scale (EDSS) is a rating system used to classify the level of disability for people with multiple sclerosis. The scale looks at key functional  systems that are affected by multiple sclerosis.
The functional systems are:

• Pyramidal (ability to walk)
• Cerebellar (coordination)
• Brain stem (speech and swallowing)
• Sensory (touch and pain)
• Bowel and bladder functions
• Visual
• Mental
• Other (includes any other neurological findings due to MS)

The scale is from 0-10 with a 0 indicating a normal neurological exam, a 9.5 indicating a person being totally helpless and bedridden and unable to communicate effectively or eat and swallow, and 10 indicating death due to multiple sclerosis.

Prior to this procedure, a neurologist determined that Chris was a 4.0 on the EDSS scale. This meant that the MS was affecting several different functional systems with major and minor disabilities. The person is fully ambulatory without aid, and is up and about most of the day (12 hours) despite relatively severe disability. He or she is able to walk 500 meters without aid or rest.

We found out yesterday that the neurologist who saw Chris in June determined he was a 2.5 at that time. This meant that there was mild disability in one functional system or minimal disability in two functional systems.

We also discovered that the neurologist who saw Chris yesterday determined that Chris is now a 2.0 on the EDSS scale. This means they determined that Chris only has minimal disability in one functional system.

That is such a big change in just one year. We were ecstatic to hear about Chris' improvement. 

Chris also met with Dr. Atkins and he decided that Chris no longer needed to be on any of his medications.This will mark the first time since 2007 that Chris will not be on any medications. We can throw out his sharps container because we know Chris will never need to take another injection for his MS again. We will finally have room in our medicine cabinet for normal drugs, like Advil, instead of polysyllabic drugs, like famciclovir and zopiclone.

We are now busy getting ready for Christmas. It will be a lot different from last year for many reasons. Mainly, we are so thankful to be able to spend this holiday season with friends and family instead of nurses and doctors (no matter how great those nurses and doctors were!) As hard as it was spending Christmas in the hospital last year, we are so grateful that Chris had the opportunity to have this procedure.

Happy Holidays Everyone!

And Happy Birthday, Chris!

Results from the the Canadian MS/BMT Study

On October 19 -22 Chris' doctors attended the European and Americas Committees for Treatment and Research in Multiple Sclerosis and presented their results from the Canadian Multiple Sclerosis Bone Marrow Transplant study.


While Chris is not included in the official study, he underwent the exact same treatment, so it was really interesting to see the results. 


We won't be getting Chris' results until December, so we are using this good news to tide us over until then. 


I have included the official abstract that they presented. I have also added my comments in bold. My comments are based on my understanding, so there may be some errors. 

Neurological recovery following treatment of aggressive multiple sclerosis with immunoablation and autologous stem cell transplantation

M.S. Freedman, H.L. Atkins, M.J. Bowman on behalf of the Canadian MS/BMT Study Group

Background & Objectives: Immunoablation followed by autologous stem cell transplant (ASCT) is being studied as a potential treatment for MS to establish if a long-lasting MS progression free response can be induced for patients with active and progressive disease who are predicted to have a poor prognosis. 


Method:
The Canadian MS/BMT trial is a non-randomized (i.e. everyone knows what treatment they are getting) phase II trial of intensive chemotherapy and CD34 selected ASCT in 24 patients (this does not include Chris as he wasn't formally part of the trial) considered at high risk of progression with aggressive MS who failed >1 year of standard treatment and EDSS >3 and <6 (EDSS is the scale used to evaluate the level of disability in MS patients. Chris was about a 3 or 3.5 before his transplant)


Patients underwent stem cell mobilization  following high dose cyclophosphamide (CTX) and G-CSF (this was the stem cell collection stage that involved cyclophosphamide and neupogen injections and then the removal of Chris' excess stem cells). Immunoablation with CTX, anti-thymocyte globulin (ATG) and adjusted-dose busulphan was followed by infusion of an ASCT graft depleted of immune cells (this is when they blasted Chris with busulphan, cyclophosphamide, and ATG to destroy his immune system and then reintroduced his old stem cells minus the T cell.)


Results: The first transplant occurred in October 2001 and the 24th transplant was completed in December 2009 with a median follow-up of 62 months.


Most patients developed expected organ toxicities and febrile neutropenia but these were generally mild and transient. Serious toxicity developed in 2 patients receiving the highest dose of busulphan leading to fatal liver necrosis in one.


After 1,571 patient-months of follow-up
- not a single patient has experienced any further signs of inflammatory disease manifesting as relapses or new MRI lesions. (this is huge!  no more relapses!)


- 16/24 patients have stabilized or improved in their level of disability as measured by their EDSS,


- 7 patients have experienced ongoing progression of disabilities.(this means that while they have not had any relapses, the disabilities that they already had prior to treatment have gotten worse. This supports the idea that earlier intervention when the patient still has relapse-remitting MS has the best results)


Overall survival reaches a plateau of 95%.
The long term event – free (relapse, progression, death) survival reached a plateau of ~70%.


Conclusions: The results to date demonstrate that high intensity immunosuppression with ASCT is a viable treatment option for patients with very poor prognosis and can change the natural history of aggressive MS.

9 1/2 month post-transplant update

Chris at the top of the Duomo in Florence. Did we mention
that it was 462 steps to the top?

We celebrated Chris' 9 month transplant anniversary in style. To celebrate our first year wedding anniversary (September 18), we headed to Italy and are pleased to report the incredible changes we noticed in Chris' condition.

Prior to his transplant, Chris had a really hard time walking long distances, whether he was having a relapse or not. It was almost impossible for him in hot weather.

Italy definitely posed a challenge. Anyone who has been to Italy knows that to see all of the sites requires a lot of walking and a lot of stairs. And of course, there was a heat wave in Italy when we went and it was 34 degrees everyday.

But throughout our entire trip Chris had no problem walking, climbing and sometimes breaking into a jog (when he accidentally left our camera at the restaurant!).

The first thing we noticed was the lack of Chris' "floppy foot." (In case you hadn't figured, that is not a real medical term). It is caused by muscle weakness and tightening in Chris' left leg and the term "floppy foot" comes from the loud sound his foot makes when it flops on the ground. The sound is usually my first indication that Chris is having walking difficulty (because Chris never wants to admit it) and unfortunately it causes him to have really bad knee and hip pain.

Over the years we have both become accustomed to this noise when walking and it wasn't until a few days into the trip that we realized that we never heard it, not even once.  We even had days where we walked upwards of 20 km and climbed 800 stairs in 30 degree weather and Chris never once had to rest or felt any discomfort.

Even if you compare this to a few months ago when we were in Montreal (see last blog post), this is a huge difference. In Montreal, Chris found that the heat made it harder for him to walk and he did need to take a break because his "floppy foot" had kicked in and it was causing pain in his hip.

So throughout the trip we kept on trying to do things that Chris would have never been able to do before his transplant. It was a great vacation.

After coming back from Italy, we decided to head to the gym to burn off all of the pasta we ate and Chris decided to go on a treadmill for the first time in 5 years.

He isn't close to running marathons (yet!), but he was able to run for 15-30 second intervals at a pretty high pace. A year ago at this time, Chris couldn't even force his body to run.

We have also received Chris schedule for his research study. On December 4, Chris will have his 1 year MRI and then we will get to review it, along with Chris' previous MRIs, with Chris' neurologist on December 12.

We are really excited to see the difference in his MRI. With all of the changes that we are seeing, we know that there has to be a visible change in the lesions on Chris' brain. We are just curious to see how different his MRI will be from last year.

For us, the question is not "Did this procedure work?" its "How well did this procedure work?" I am hoping the Chris wins most improved.

7 month post-transplant update

On Monday, Chris went to Montreal as part of the research study to have a Magnetic resonance spectroscopy (MRS) scan.

These scan are very similar to an MRI scan, however, they are able to evaluate the severity of MS, establish a prognosis, follow disease evolution and most importantly, evaluate the effectiveness of drug and treatment interventions.

Chris will have this scan, in addition to two MRIs, each year to monitor his progress.

We had travelled to Montreal on Sunday, so that I could do some shopping and Chris, who had never visited Montreal, could see some of the sights. And of course, because it was a weekend and we didn't even think to pack our contact numbers for the hospital, something weird had to happen to Chris.

Earlier in the week, Chris had started to get really itchy dry skin. He works outside most days and is awful for remembering sun screen, so neither of us thought anything of this. By Friday, he was covered in small, extremely itchy hives, all over his body. We assumed it was maybe an allergic reaction to something.

Two days on Benadryl and train ride to Montreal later and the hives were bigger, the itching was more intense and Chris was a pretty miserable guy. In addition, his skin became so sensitive that anytime anyone touched him he would break out into goose bumps.

Unfortunately, we ended up having to call everyone in the Ottawa hospital before we were able to get some advice, which provided little reassurance: see a doctor immediately. So,  Chris ended up having to spend two and a half hours at the walk-in clinic to find out that they had no idea what was wrong with him.

Chris finally made it back to the Ottawa hospital to see Dr. Atkins. There was a concern that he might have chicken pox (since he would have lost his immunity to this due to his transplant), so the nurses and doctors had to be extremely cautious. The likely suspect is that Chris has conveniently developed an allergy to one of his medications. So now he has been taken off all medications and he will be reintroduced to them slowly to determine the culprit.

The irony of this all is the treatment plan for Chris' hives.  When Chris had the transplant, he celebrated that fact that he would never have to take another Rebif injection or take steroids whenever he had a relapse. To try and combat the reaction that he had from his transplant medication, Chris now needs to take steroids for the next week.

In terms of improvement, Chris was able to walk approximately 10 km in extremely hot weather in Montreal, with only one break (to have world famous smoked meat sandwiches). Last year at this time, he wasn't able to walk 2km without being in pain from his leg and needing a break, and at the MS walk in May, he needed to have a break on the 5km walk.

6 Month Update

Happy 6 Month Birthday, Chris!
It has now been six months since Chris received his new stem cells. It's really hard to believe that it was that long ago.

How did he celebrate? By spending the day at the hospital being poked and prodded of course! (However, he can't really complain, because he did sign up to be part of the research study).

Today ended up being a pretty long day. We arrived at the hospital bright and early, so that Chris could go over the consent forms and ask questions about the study.

Next, he had a "Visual Evoke Potentials' test, which measures the time it takes for nerves to respond to stimulation. This test was at least entertaining (well, for me) as they stuck electrodes to Chris' head and had him stare at a red dot on a computer screen while the background was moving. There was a student there learning about the test, so I ended up getting a bit of a tutorial too! Chris wasn't allowed to listen or talk, so this test probably wasn't as entertaining for him.

After this, I got to hang out in the waiting room while Chris did a speed walking test, distance test, a peg tests (it is exactly how it sounds, Chris had to put pegs in holes) and then some math and cognitive tests. He tested me on some of the questions afterwards and I swear I would fail.

One of the tests was called a PASAT test, which assesses auditory information processing speed and flexibility, as well as calculation ability (it also sounds evil). The examiner will call out a number every 3 or 2 seconds and the patient must add each new digit to the one immediately prior to it.

For example the examiner would call out: 3 then 4 and then you would respond 7, then the examiner would call out 8 and you would need to remember the last number was 4 and call out 12. They repeat this 60 times.

Next, Chris has to do blood work (a lot of blood work, about 20 tubes) and a bunch of eye charts. He also had an Optical Coherence Tomography (OCT) test that measures the thickness of the nerve fibres in the retina of the eye. In order to do this test, Chris needed to have his eyes dilated, which also provided me with a lot of entertainment. It also meant that Chris needed to wear sunglasses for four hours afterwards and wasn't able to see anything upclose. Originally, he had scheduled three meetings after his hospital visit today, but he found out the hard way that he is pretty much out of commission for the day. I ended up needing to drive him around and dial his phone for him so he could cancel all of his meetings.

Finally, Chris had two neurological exams. One exam was from an unbiased neurologist,  who had never met Chris and did not know his history, and the other was with Dr. Freedman, who has evaluated Chris prior to the transplant. The reason for the unbiased neurologist is so that they don't know what to look for and can give a patient an EDSS score without knowing what score you had before.

We had a great experience when we met with Dr. Freedman as he already noticed a difference in Chris! Chris had an MRI after his transplant when he was still in the hospital, so he was able to compare this MRI to an MRI he had a year ago. He was able to show us parts on the scan where the lesions had shrunk. They were not drastically smaller, but the MRI was just under 6 months ago. Who knows what the lesions could look like now?

The best part was when he tested Chris' legs. Last year, when he was testing Chris' leg strength, Dr. Freedman was able to overpower Chris' left leg and push it to the ground. He had marked it down in his notes that Chris had moderate muscle weakness in his left leg. Today, he wasn't even able to tell the difference between Chris' two legs and had to check his notes to remember which leg was weaker. He seemed genuinely shocked that Chris had moderate muscle weakness in his leg before and only six months after his transplant, there didn't seem to be any difference.

We have tried to be really cautious in talking about Chris' improvement (mainly because we didn't want to jinx it), but he really does seem to be doing a lot better.

What a great birthday present!

MS Walk and Research Study



To all our incredible donors: Team Glazier thanks you!



As we mentioned previously on this blog, Chris and I decided to participate in the Ottawa MS Walk this year. We feel a huge amount of gratitude to the MS Society, who  funded the stem cell transplant trial, as well as the research study that Chris is now participating in.

We also feel a huge amount of gratitude to our friends and family that signed up to join our MS Walk team,Team Glazier, and generously donated. In total, we raised approximately $6,500.

For anyone still interested, we can still accept donations for the MS Walk until June 13
http://msofs.mssociety.ca/2011WALK/SponsorTeam.aspx?&PID=1246591&L=2

At the walk, I was interviewed by CTV News about Chris' experience (they had read our blog!). Now some people claim they saw me getting emotional, but I still stand by the fact that I was cool and calm.

You can see my television debut here: http://ottawa.ctv.ca/servlet/an/local/CTVNews/20110515/OTT_ms_walk_110515/20110515/?hub=OttawaHome

While the walk was such a great day, Chris did have some difficulty walking the 5 km. Chris finds that especially in the cold his muscles in his left leg seem to contract and it puts a lot of pressure on his hip. For the last 1 km Chris was definitely in a lot of discomfort, but he pushed through and finished the walk. Chris has been doing so well since the procedure, we sometimes forget that it is not an instant fix.

Finally, we have received Chris' schedule for the MS Research Clinic. Chris will be spending the morning at the clinic on June 13 (exactly 6 months following his transplant). He will also be getting an MRI on June 17.  This means we will have a much better idea on how this procedure has affected his MS.

4 1/2 Month Update

Chris had a week full of appointments this last week.

Last Tuesday, we went to his last transplant appointment. Chris is recovering so well that he has been moved to the MS clinic and will be monitored by Dr. Atkins. His blood work came back much better this month and were all within the "normal range" for a transplant patient.

Next, on the weekend Chris went and had his IVIG transfusion. Unfortunately, I came down with a really bad flu (Chris was taking care of me this time!), so Chris had to go to the appointment alone. The good news is even though he was around me all weekend, he hasn't yet shown any signs of feeling sick. This new immune system he has seems to be immune to my germs.



Chris today vs. Chris in  January. This would have been the difference
 Dr. Atkins would have seen today.



Finally, today Chris had his first appointment with Dr. Atkins and the nurse co-ordinator with the MS clinic. Dr. Atkins had not seen Chris since he was an out-patient in January and when he walked in the door he was really surprised with how great Chris looked.  If you look at the pictures it is a pretty huge difference. We went over Chris' progress to date and it really is great to talk about how far Chris has come in such a short time period. He really is back to feeling how he did before the transplant.

We also learned about a post-transplant study that Chris will start taking part in. In 2010, the Multiple Sclerosis Society of Canada funded a research grant for "Long Term Outcomes Following Immunoablative Therapy and Autologous Stem Cell Transplant for Poor Prognosis MS." This study will follow any MS patients that have undergone a transplant to see if this transplant stops the progression of MS in the long term.

To date, all of the participants in the study have not progressed. Also, they want to see if any of the participants have improved EDSS scores. This is the system that is used to determine the level of disability with MS patients. This means that starting in June Chris will go in for a number of tests and an MRI to track his MS. The test includes a timed walking test, a math test, a vision test, a peg test (you need to place plastic pegs in holes) and, of course blood tests!

While Chris has never had a formal EDSS evaluation, but his neurologist did say he was about a 3.5 on a scale of 10. To give perspective on what that number means, a person with a  5 on scale is able to walk 200 meters without aid or rest, a person with a 7 is completely restricted to a wheelchair , a person with a 9 is completely restricted to a bed, but is able to eat and talk. 

There are people that have undergone the transplant that have improved substantially on the EDSS scale, sometimes going all the way down to 0.5, which means while there are still signs on the MRI scan there are no disabilities present.

We will now be using the blog to update you on Chris' progress, so hopefully the next time we blog in June, we will be able to tell you if Chris is improving!