Monday, June 18, 2012

Research Study Update

Chris had his Multiple Sclerosis Research Study appointment today. This is the appointment where they get Chris to do a bunch of tests to determine the progression or improvement of his disease.

We had good news and bad news.

Good news. Chris is still doing great. No signs of any disease progression, which is the same as all other transplant patients, and small signs of improvement. He had an EDSS score of 2.0 at his last appointment in December, and one neurologist even considered giving him a 1.5. His official score is still a 2.0, but in my mind he is more like a 1.75 (not a real score, but since he was borderline I think they need have a bigger range).

Bad news: Since the MS Society of Canada did not renew its grant for its long-term research study, the formal research study will end this year and this was Chris' last research study appointment. We were assured that they would continue to apply for funding, and they would continue to see Chris to track his progress, but the research study portion will end.

It is really disappointing news seeing a procedure that has been so successful (all patients have seen a halt in their MS progression) lose funding. Knowing the long-term effects and benefits of this procedure is so important and it really seems like such a shame that this will longer happen. For us, since we live in Ottawa, this will not make that big of a difference. Chris will continued to be monitored. However,patients that need to travel to Ottawa from across Canada, including PEI and British Columbia, will now need to travel on their own dime if they want to continue to see Dr. Freedman and the MS transplant team.

We also found out that the MS research team also did not get funding for a different kind of stem cell therapy that uses the patient's own mesenchymal stem cells. The benefits of this therapy is that it does not require the patient to undergo intensive chemotherapy and is much safer than the transplant. There have been several clinical trials of this therapy in Europe, but unfortunately, it is not being researched in Canada.

What makes this so frustrating is that while these research studies are not getting funding, the MS Society and provincial governments are throwing tons of money at CCSVI, which has had nowhere near the success rates. I can completely understand why MS patients want CCSVI to be the cure, and at one point Chris was on a waiting list to get the veins in his neck scanned to see if this was the cause of his MS.

However, after reading so many studies that do not support this treatment having any lasting benefits, including the Newfoundland study this month, and hearing from other people through our blog who have underwent the procedure and had limited or no improvement, I am convinced that it is not the "liberation procedure."

Okay, my rant is over.

Back to the good news. Chris is continuing to impress the MS research team with how well he is doing post-transplant. And we will continue to update the blog with his progress, with or without the continuation of the research study.

*Editor's Note: If you are extremely wealthy person reading this blog and wondering what to do with all of your money, I would suggest contacting and donating all of your money to the Multiple Sclerosis Research Unit at the Ottawa Hospital.

Sunday, May 27, 2012

Chris MS Recovery Update: Two Years Relapse Free

Chris kayaking in Mexico in March. One of the many new
active hobbies we have taken up since his transplant.
I have been feeling guilty now with how little we have been updating this blog since  Chris' transplant, but to tell you the truth, there is not much to report on anymore. And no news is good news, right?

However, we are very excited to announce that Chris has hit a pretty big milestone this month. He is now two years relapse free. It is hard to believe that two years ago, Chris had started having a relapse every other month and was rapidly declining, and now he seems to be only getting better. The difference in his life is pretty significant.

Sure, Chris still is unable to run, but he can ride a bike further and faster than I can, and is stronger than ever before.

Chris might not have the greatest memory and never seems to remember anything that I tell him, but I don't ever recall a time in our seven year relationship when he did have a good memory. And I still have yet to meet anyone that thinks that their husband/boyfriend remembers everything (or anything) they say.

And, Chris may still have a hard time walking long distance in cool weather. But really, who likes to go on long walks when it is cold outside anyway?

Speaking of long walks in cold weather, we participated in the annual MS Walk on April 29, and were able to raise $3,129.31 for the MS Society of Canada. It was, however, an extremely cold morning for the walk. I think it was about 3 degrees celsius and extremely windy. As we have mentioned before, Chris is different from most people with MS, and is actually cold-sensitive (most people are heat-sensitive). This means that Chris actually finds that his MS symptoms actually get worse in cold weather.

Despite this, Chris was able to finish the 5km walk without a problem, which marked a big difference from the year before. Last year, Chris experienced really bad hip pain from the limp he developed during the walk, and was forced to stop throughout the walk to rest. This year, Chris had no problem keeping pace, and finished the walk without a break or complaint.

Next month, Chris has his biannual MS research appointment, where they track his improvement following the transplant and we will be sure to let you know if Chris has his EDSS score lower again. Fingers crossed!

Saturday, March 3, 2012

Chris' Recovery Update

This winter Chris has been really dedicated to improving his strength and balance, so that his EDSS score is even lower at his next appointment. 

Chris accepting a volunteer award from the Multiple
Sclerosis Society of Ottawa for his being one of the
top five fundraisers.
We have joined a new gym and are now making an effort to go four or five times a week. I have even convinced Chris to take a yoga class with me to increase his core strength and balance. Before we started, Chris was notorious for losing his balance when doing simple things, even when turning his head to quickly. Now, he is holding tree pose with the best of them (he is probably not going to appreciated me sharing this). 

The biggest improvement we have seen has been Chris' skating abilities. Chris, a stereotypical Canadian male, grew up playing hockey for 10 years. And after he stopped playing in a league, he was always game to play every opportunity he had. Chris even taught me to skate as one of our first dates. 

However, about four years ago, we started to see Chris' skating abilities deteriorate. The last time he had tried, he fell (hard) multiple times due to his weak ankle strength and poor balance. He had to hang on to me for support (a total role reversal) and eventually gave up and swapped his skates for boots. 

Two weeks ago, since Chris was finding it easier to bike and ride the elliptical, we decided to take a trip to the local arena and Chris skated again for the first time. It was a HUGE improvement. While we are not contacting the Toronto Maple Leafs (yet), Chris was doing laps all on his own and looking strong. The best part was how happy he looked. Seriously, it was like he had been drafted by the NHL. I had to convince him that I was near frozen, before he agreed to go.

The other big update is that we have signed up again to do the Ottawa MS Walk to raise money for the MS Society of Canada. We did the Walk last year, and our team placed fifth overall for team fundraising. We are trying to do even better this year, with a goal of $10,000. It's a huge goal, but after seeing the difference that the MS Society is making in Chris' life, we are completely dedicated to helping improve the lives of others with MS. 

If you are interesting in donating, please visit our team page at: http://mssoc.convio.net/site/TR/MSWalk/OntarioDivision?team_id=4717&pg=team&fr_id=1338



Tuesday, December 13, 2011

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!

Friday, November 11, 2011

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.

Monday, October 3, 2011

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.

Friday, July 22, 2011

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.