Today, September 4, 2017, is my four year HSCT stem cell Birthday. Honestly, nothing new to report, still holding on progression free. If you read my 1, 2, 3 year post updates, you can see how I’m doing. Not complaining at all, no progression is what I continue to pray for.
I continue to workout 5-6 days a week. Either walking, lifting weights, or taking a HIIT class. I’ve moved since my last update and no longer have access to the amazing classes, and people, I had while living in Dayton, OH, but I’m trying to find a new groove. I have walked further, 6.75 miles is my new record, but I found that to be too far for me at this point, it took me a week to recover. So I keep my long walks between 5-6 miles.
Thank you again for all of those that have cheered me on over the past several years.
Three years have flown by! It’s almost surreal that I was in Russia this time three years ago undergoing HSCT for PPMS. My EDSS* was 6 then, today I’d say I’m a 4 on a good day. EDSS doesn’t take into consideration my other issues, only your physical disabilities, my main disabilities are cognitive, etc… I still have lots of damage and issues, but physically I’m stronger due to a lot of time in the gym, walking and biking. I’m not complaining, I was a 6 and progressing at 1 point a year that would make me a 9 now… 10 is “Death due to MS”. Obviously I’m happy with the results, and have put in the time to see what I could get back. You can read my 1 year and 2 year post to see my symptom improvements, nothing there has changed since the first 12 months. Other than that I really don’t have much to report. I’m often asked what my walking looks like, so I put together a video reviewing the past 3 years, and included some clips of before, during, and after. (see below)
Click below to watch the video of the past three years of progress. The music is “Rise”, by Katy Perry.
A little late, but here is my 2 year post HSCT update.
Just to recap, I’m PPMS, my EDSS had recently transitioned to 6 before HSCT, I’d say it’s now a 5. I was diagnosed with PPMS, May, 2012 and was admitted to the hospital in Moscow on August 19, 2013, it was my 47th Birthday. Treatment went very smoothly, and I returned home on September 25, 2013.
Year 2, post HSCT, has definitely been much better than year 1, considering my chemo joint pain finally ended, after 14 months, and has not returned. I feel very strong, and keep pushing myself to see what additional improvements I might have. I know “they” say that what you have a 2 years, is what you get, but I tend to try and prove “them” wrong. Shoot, many say that HSCT won’t work for PPMS, I proved that wrong. So, I’ll keep pushing the envelope and see what else I can do.
Physical fitness is still my main push, I workout almost every day. I work with a trainer in a semi-private class M/W/F. It’s a high intensity, fast paced, training session and I have to try and keep up with someone who doesn’t have PPMS, but I hold my own. Some modification have to be made on a few of the moves, like I can’t jump, and I’m not as strong as others, but I’m moving. This isn’t what you normally see a trainer in a gym do, no benches, or machines involved. This is a timed workout, and you go from exercise to exercise, with only 10 second breaks. It is a total body workout, and every exercise involves the core. We use resistance bands, TRX, dumb bells, kettle bells, and our own body weight. This has really helped my balance.
Also I enjoy cycling, I ride a hybrid mountain bike, and ride one day during the weekend, and have added a Tuesday morning ride, with the other lady in my training class. I usually ride 15-17 miles, and I have a goal of 20 miles by the end of 2015. Last year my goal was 10 miles by the end of 2014, so to be able to double that would be amazing. Getting off the bike, after my ride, isn’t pretty or graceful. I have my riding partner go ahead of me and to be there on standby if I need help. I ride up to the back of my SUV, lean on the hatch back and physically have to lift my leg over the bike bar, and it’s a women’s bike, so not a high lift. My legs are totally spent for the rest of the day, and walking is more stubbly, but I recover. It used to take me several days to recover, now usually okay after a day.
Just finished up a ride. Summer 2015.
Walking has seemed to have maxed out at 2.25 miles (3.62 km), that’s with hills. I’d love for that to improve, but it doesn’t seem to be happening. Even though I no longer use a trekking pole for my daily activities, I use two trekking poles when I do long walks, no way I’d be able to do that distance without them. Before HSCT .25 miles was pushing it, so this is a big improvement.
Here are my symptoms and how they are now.
I’d like to add, I think my symptoms listed below pretty much are the same as at the one year point, but that’s fine, they’ve not gotten worse, unless I’m really stressed, tired, or have overdone it.
COGNITIVE: “Chemo brain” is real, and finally seems to have cleared up. I’m still not as sharp mentally as I’d like, it is better than when I had chemo brain. I still wright everything down, keep reminders in my phone, and keep a detailed calendar of what I am to do each day, but I am working on this. Hopefully with some memory training I can improve this too.
FATIGUE: I still need a nap mid day to recharge. Usually an hour does it, and I’m good to go the rest of the day, but some days, like on days where I’ve gone on a bike ride, I may sleep up to 2 hours. To me this is a very annoying. I hate when people tell me they’d love to take a nap every day. I don’t nap because I want to, I nap because I have to, to function the second part of the day.
BLADDER URGENCY: This has greatly improved, since before HSCT, but the same as a year ago.
SPASTICITY: This has greatly improved, since before HSCT, but the same as post one year. My legs are really stiff in the mornings, and I stretch to get moving. I still have spasticity at night, or when I’ve had to sit a long time, it can still be very painful. Usually a couple of Formula 303 do the job. (magnesium, valerian root natural supplement) I take 2 around 6-7 pm nightly. I’ve tried Baclofen, but I hate the way it makes me feel the next day, and since it has to build up in your system you have to take it daily for it to be effective. I recently had my Neuro prescribe Valium, it works great on the nights that the Formula 303 isn’t enough. It was also great for our recent trip to France, I don’t think I could have been comfortable on the long flight without it.
LEG WEAKNESS: They are still weak, and feel heavy, even with all the exercises I do, but they are better than before HSCT. It still feels as though I have ankle weights on, all the time. So jumping, or running aren’t in my future. My calves, and hamstrings seemed to be improving more than my quads, so I’m still working on them to see if they will gain more strength. When I’m tired, or have done a lot, they are much worse. I still use my trekking pole if I’m going on a long walk, traveling, or just having weaker leg day.
TOE DROP: Greatly improved, since before HSCT. I’m no longer wearing through the toes of my shoes. I still can’t wear flip flops, sandals, or many “cute” shoes, but I’m walking. My gait has really improved, from before HSCT. When I’m tired, had a long walk or bike ride, it comes back, so I have to be very careful not to trip.
SWALLOWING: Totally improved after HSCT. I’d gotten where I could choke on almost anything. This doesn’t seem to be an issue at all anymore.
SPEECH: I really didn’t notice this symptom too much before HSCT, but I don’t consider it a new symptom, just one that didn’t bother me as much as all the others. I do have a slight hesitation in my speech at times, and it can me much worse when I’m tired.
COLD INTOLERANCE: This was one of the first symptoms I noticed improvement after HSCT. I’d say it’s almost totally gone. It does take longer to warm up my muscles when it’s cold, but at least I can walk. Before I could barely walk when it was even chilly. Moving from Florida to Arkansas just before HSCT, this was a huge concern of mine. Last December I met my goal of riding 10 miles on my bike before the end of the year, it was 41 degrees Fahrenheit (5 Celsius). This would have been impossible before HSCT, my legs wouldn’t have moved.
Just as a side note:
Traveling is something we love to do, and before HSCT I thought traveling abroad would no longer be an option. Well, we just returned from a wonderful vacation in France, and I was amazed what I was able to do. (NOTE: I do use my trekking pole when I travel)
Mont Saint Michel – France
Had to climb these steps to get to the view.
Now enjoying the view.
Dune of Pilat – France I had to walk up these steps to get to the top for the view.
Made it!!
Now walking down in the sand.
I’ll keep pushing and hopefully I’ll experience additional improvements, but if this is as good as it gets, it’s more than I ever expected. I’m so much better than I was before HSCT. I now focus on reducing stress, exercise, and eating a very healthy diet. Oh… and living life to the fullest.
Thank you Dr. Fedorenko and your wonderful staff, you gave me hope when no one else would.
I’m now 18 months Post HSCT for PPMS in Moscow, Russia. What an amazing year and half it’s been. The roller coaster of recovery appears to be settling down, hopefully I didn’t just Jinx myself. The last few months I’ve really noticed an improvement in my walking, gait and balance, but I think that’s because my chemo pain has finally gone away.
Just to recap, I’m PPMS, my EDSS was a 6 pre-HSCT, I’d say it’s now a 5. I was diagnosed with PPMS May, 2012 and was admitted to the hospital in Moscow on August 19, 2013, it was my 47th Birthday. Treatment went very smoothly, and I returned home on September 25, 2013. I had a little set back in June, when I fell and broke my right arm. I’ve not had any infections, and only 1 cold, and that was after 12 months. So, overall, I’ve had a pretty smooth recovery up until now. (Again, I know I’m probably Jinxing myself) I did have extreme chemo pain, that seemed to last much longer than most, 14 months, but once it finally left I’ve felt great. Emotionally recovery is more difficult than I would have imagined, but I’ve pushed through. I was a freak about cleanliness, food, and staying clear of dirt for the first 12 months home. I also have been very focused on physical recovery. I started PT after 1 month home, did that for 6-8 weeks, then started working out at the gym and walking regularly. After the first 12 months of doing that on my own, I began working out with a personal trainer, to see if I could take my recovery to the next level. I’ve continued working with him for the past 6 months. I do still seem to need a nap every day, but hopefully that will improve over time, but I am pushing my body pretty hard right now. I also have some brain fog, and times where my speech seems to hesitate, but this seem worse when I’m tired or stressed. My spasticity has greatly improved, since before HSCT. It is worse on the evenings that I’ve had a hard workout or long bike ride, but still usually manageable with just a couple of magnesium pills. Overall, the results have been better than I every dreamed.
And for anyone that has MS you will be familiar with the timed 25 ft. walk. When I went to the Neurologist for my 6 month post check up my time was 6.2 seconds. At my 12 month check up, it was 5.2. This week we timed it at home, you can see the tape measure on the floor, my time was 4.4 seconds. So, not too bad, even if I do say so myself. I think the chemo pain letting up played a role in my faster speed, I wasn’t in pain.
I’m big on setting goals for myself, one was to ride my bike 10 miles before the end of 2014. Well, I did it!! With a few days to spare. It was cold, but that didn’t slow me down. Considering I was cold intolerant before HSCT, this was even more amazing. It’s been a bit too cold and rainy to ride the past month, so I ride the stationary bike at the gym once a week. As soon as the weather improves I plan on being on my bike again. My new goal is 15 miles by August. Stay Tuned!!
Goal of riding bike 10 miles by end of 2014.
As I mentioned I’ve been working out with a personal trainer for the past 6 months. He started me out very basic, to help with balance and building strength. I go two times a week and we do a High Intensity Interval Training type workout. So, actual workout time is usually 20-25 minutes, then there is warm up and cool down time. So, this really gets the heart pumping. It’s amazing how much this has helped in building strength and improving my balance. This will be something I plan on continuing as long as I can. I love my workout days. Other days, I walk, go to the the gym or ride my bike.
And I can’t leave out my husbands favorite party trick. Me getting up off the floor without crawling to a piece of furniture. Yes, this is a huge deal in our house.
Here are a few videos of what my workouts with the trainer look like.
This video looks silly if you don’t realize I have a resistance band around my waist.
For anyone that might doubt that my EDSS was a 6, here is a copy of my discharge papers from the hospital.
I thought this showed how my toe used to drag when I walked.
The tennis shoes I was wore before HSCT.
The last pair I wore, before the newer ones I wear today.
Yep, HSCT can work for those of us with PPMS too!
Thank you Dr. Fedorenko, and your team, for giving me a chance and hope.
So, that’s it for now. I’ll update again at the two year mark.
I am so blessed to have been able to have HSCT in Moscow last year, and happy to report, all indications are it’s been successful in stopping my PPMS progression. For HSCT to be considered successful, it only has to stop the progression of the disease, no improvements have to be achieved. But… I have had some improvements.
Here is a very short YouTube clip of my hair growing back. Only 17 seconds, so don’t blink. It has sound too.
For me, recovery has been much harder than the procedure itself. I say this because, you knew how long the procedure was going to take, and pretty much what to expect, you don’t know what to expect day to day with recovery. It truly is a roller coaster ride, and not all that fun at times. It has also been very emotional, not knowing what to expect and wishing recovery would happen faster. Slow and steady is the thing everyone must remember during this time, and expect to be taught patience, whether you want to learn it or not. But, I’m now one year out and looking to the future.
In March I was interviewed by our local morning show, Good Morning Arkansas – KATV, for MS Awareness Month.
Several have asked that I talk about my improvements as well as things that didn’t improve. Being PPMS, my main symptoms were walking, gait, spasticity, balance, bladder urgency, cold sensitivity, fatigue and cognitive issues. I still have spasticity, and manage it with magnesium tablets, usually a couple at night do the trick. Some nights that doesn’t help enough and I’ll have a couple of glasses of wine too. I’ve discussed this with my doctor and he agrees this is less harmful, in my case, than taking Baclofen or other muscle relaxers. More enjoyable too. 🙂 Baclofen gives me horrible nightmares and makes me feel drugged half of the next day. Cold sensitivity greatly improved while in the hospital.. Despite the challenge of living in a colder climate last winter, I was out walking in 30F without problems. Balance, bladder urgency, cognitive issues have all improved, but not perfect.
My walking is better some times more others, but I’d say it’s improved. I even had a neighbor comment that she didn’t think that was me walking the other night because my gait was so normal. I know I’ll never be back to 100% normal, but I can live with the way I am now. I was able to pretty much retire my trekking pole at 6 months. I still pull it out if I have a lot of walking to do, like when we went to San Francisco recently. I would have fallen several times without out it. When my legs get tired they get sloppy and don’t want to work properly. So, I put my pride aside and bring it out for safety sake.
Fatigue has been another symptom that is hanging on. It is better, but not gone. I still need a nap mid-day, every day, to function. I really hoped this would be gone by now. It really does disrupt my day, but I have to make time for it. Maybe I’ll see improvement over the next year.
I’d reported terrible joint pain in some of my previous blogs. I’ve spoken to several others that have had it, and it is listed as a possible side effect of the chemo I had. Apparently I’m now holding the record for the longest, continuous joint pain. Thankfully it’s now only in my ankles, feet and toes, and is mostly gone from my knees, but it still is very painful. I’ve tried every home remedy that I could find and nothing touches the pain. It does work it’s way out after I get moving, but sitting, sleeping, getting started walking, all very painful.
Now some good news, I’d set a goal to walk 2 miles by August. CHECK! Did that by mid June. It does take it all out of me, and I’m pretty much wiped the rest of the day with Jello Legs, but I can do it. My normal walk is 1.5 miles a couple of times a week and then 2 miles on Sunday. So, much better than the .25 miles I was barely able to do before I left. I’ve also worked very hard at the gym, I lift weights on the days I don’t walk. I’m very happy with the progress and hopefully I’ll be able to continue to add more distance slowly. I will tell you the key is working out every day. Don’t be a couch potato and expect to improve like this, it’s hard work.
I’ve also been able to ride my bike again. Unfortunately, right after I started on the bike, I fell and broke my arm. (I didn’t fall riding my bike, just walking and tripped over something on the pavement) So riding has been put on the back burner for a little while longer. I was pleased that the 2nd time I got on my bike I was able to ride 6.5 miles, which is what I was doing before I left. The difference this time around is my legs were not “sloppy” the last mile like before. They were still pretty strong. I could have gone further, but didn’t want to push it on my first long ride. So, hopefully in the next few weeks I’ll be back on my bike and adding distance.
Also in June I had the opportunity to meet a few other HSCT warriors in Dallas, Texas. Kristy, Brooke, Sheli and Lisa all met for a few days. Amy joined us for one night. Kristy and I went through our treatment together, so I knew her, the other ladies this was our first opportunity to meet face to face. We had a blast! We were also interviewed by ABC and CBS Dallas. (clip below)
It’s almost surreal to think that this time last year I was in Russia having HSCT. I have to read my previous blogs just to remember all that happened. I’m so thankful for Dr. Fedorenko and his team for saving my life. He believed this would work, when almost no one else did. I am also grateful for the warriors that have gone before me and paved the way for me, and now so many others. And thank you, to all of those that helped me raise money, prayed for me, sent me cards, and have been there all the way through this journey. Can’t wait to see what the next 12 months has in store!!
VW
Not my normal post, but I thought many would be interested in more of the scientific information of HSCT, so with the permission of George Goss I am able to provide the below information. It’s a lot to take in, so you may need to read it a few times, and I encourage you to watch the videos provided as well.
VW
The Science Behind Stem Cell Transplantation to cure MS
By: George Goss
There is currently only one scientifically-demonstrated & confirmed treatment for Multiple Sclerosis with enduring curative efficacy:Hematopoietic Stem Cell Transplantation (HSCT). This is not a new medical procedure; it has been performed millions of times all around the world since the 1960’s for treatment of cancer (now approximately 50,000 times per year) and has been used successfully to cure several types of hematologically-rooted autoimmune disorders since the early 1990’s (such as MS, scleroderma, rheumatoid arthritis, lupus, CIDP and others). It involves chemotherapy so the treatment is both uncomfortable and expensive (most medical insurance will not yet cover it for treatment of an autoimmune disorder until the phase III clinical trial is completed later this decade, or the beginning of the next). It is not an impossible procedure to endure, as many people do it (including me) and make it through just fine. But this procedure is currently the ONLY treatment that has been scientifically verified to stop the underlying MS disease process, restore normal immune self-tolerance and produce lasting curative symptomatic improvement for the majority of MS patients, as it has for me and others. And definitely worth mentioning. . . . probably one of the biggest intangible benefits to stopping the MS disease progression is that this treatment restores a degree of certainty to the future of a person’s life that MS often robs us of. To me this has been worth more than gold. Beyond this the only outstanding question of relevance here. . . . How much is a cure for MS worth to you in terms of time, inconvenience and money? Something that can only be answered by each individual.
The reason you probably have not previously heard of this treatment and it’s curative effect on MS is because it is still a rather uncommon procedure for treatment of autoimmune disorders. But that is changing. As of 2008 there were a cumulative total of 400 people worldwide that had undergone HSCT for the treatment of MS. Admittedly that’s not a huge number. But by 2010 that number had jumped an additional 20% to 500 people treated worldwide for MS, and a total of about 1000 for all autoimmune diseases combined with the number continuously climbing. (As of 2012 the numbers are closer to 1000 treated for MS, and closer to 2000 for all autoimmune diseases combined.) So it is just now starting to gain more traction and acceptance by the broader medical community for the treatment of MS. I’m probably the first person from North America to have the procedure completed outside of a clinical trial or study to cure my MS. But just wait until the phase III clinical trials are complete later this decade, or early the next. Then the numbers will quickly jump into the many thousands. I guarantee it!
This table (I borrowed from Dr. Dimitrios Karussis of Haddasah-Hebrew Medical Center) shows the total number of people with autoimmune disorders (including MS, scleroderma, rheumatoid arthritis, lupus, juvenile arthritis and others) worldwide that have undergone HSCT over time for the treatment of their specific disorder:
One of the most compelling reasons in support of HSCT as a cure for MS is that when you read the various & substantial foundation clinical science data it is very consistent across studies and trials. Not just a little consistent, but extremely consistent. Such reproducibility is the gold standard of science and is what really tipped my thinking overwhelmingly in favor of pursuing HSCT to successfully & completely stop my MS disease activity.
But before cutting over to reading all the science, it is important to mention this critical point. . . . . Looking at the global studies to date and building on the clinical experience and knowledge developed so far, it is well understood that people treated earlier in the MS disease cycle as opposed to later fare much better with curative HSCT treatment results. Individuals that have RRMS with a fully ambulatory Expanded Disability Status Score (EDSS) experience essentially 100% halting of their MS disease activity (my personal definition of a cure), and then on top of this better than 80% of the same group of people actually experience significant reversal (improvement) of their MS-related disability and symptoms. In effect, not a single person treated during this earlier(ambulatory) MS stage appears to experience symptomatic worsening following hematopoietic stem cell transplantation, but instead have an excellent chance of reversing their existing disease symptoms (if you consider greater than >80% an excellent chance, which I do). Unfortunately the curative results are not as impressive when utilizingHSCT for treatment of patients that have a later-stage non-ambulatory progressive MS disease status. So although likely that the progression of MS disease activity will be stopped in all forms of MS (both relapsing and progressive) following HSCT, people with advanced progressive MS are unlikely to see as much overall improvement (reversal) of existing symptoms, if at all. I have created an interpolated graphical slide to categorize the expected approximate relative probability of curative efficacy and symptomatic improvement (based upon finite data from the clinical trials) following hematopoietic stem cell transplantation vs. disease status at time of treatment which clearly favors earlier treatment, as opposed to HSCT later in the disease cycle when demonstrated benefits are usually not as obvious or dramatic:
However, for the majority of people that do experience symptomatic improvement, the rate of improvement is likely not time-linear and will usually begin to slow within the initial couple of years following transplantation, following an “expected” curvilinear asymptotic slope of diminishing returns over time. That basically means that the majority of symptomatic improvement (for those that do experience improvement) will be predominantly evident in the earlier months and years following recovery from the acute chemo effects of HSCT. For the majority of people that will experience symptomatic improvement, likely it will continue going forward but at a diminished rate over time. As a general rule the curvilinear shape of this symptomatic improvement curve will likely be evident for most MS patients receiving HSCT (and is what I am personally experiencing following my own HSCT procedure). However I’m sure the precise slope of this curve will somewhat differ for each individual based upon variable factors that include the phase of disease activity (RR, SP, PP) and relative total disability at time of treatment. The curve is likely “taller” for relapsing cases and likely “flatter” for progressive cases. (click to enlarge):
And a video from my six month blog posting (when I realized that my MS disease progression was both stopped, and reversing/improving in which I describe this phenomenon that continues today more than one-and-a-half years post-transplantation. . . .
My blog is presented completely in chronological order from before I started my treatment, to after. This post page just provides reference information for those that want to know more details regarding the clinical science. If you want to know about the experience, you can start at the first page of my blog and follow along to the happy & successful ending (I originally wrote this blog for family & friends to track my progress, but I also hope this info will help others possibly interested in this cure).
And the science. . . .
It is still not understood “why” MS occurs. But it is well understood “what” is happening in individuals with MS.
As for the cause. . . The general prevailing (unconfirmed) belief among scientific professionals is that a genetically susceptible / vulnerable individual is exposed to a yet-to-be-identified environmental antagonist that initiates the neurologically-damaging immune self-intolerance of MS. I have heard the apt analogy that genetics loads the gun and the environment pulls the trigger. Clearly more elucidation is required in this area. However, here is some relevant scientifically-determined information from researchers at the University of California, Irvine pointing down this path:
Link Between Environment and Genetics in Triggering Multiple Sclerosis
As for the underlying MS disease process / progression, the overwhelmingly-established science and scientifically-valid data clearly indicates that the mechanistic action of the underlying MS disease pathology is that of self-intolerant autoimmunity. Most doctors / researchers now consider this as fact, not just conjecture as explained by these research scientists at Wayne State University:
“This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles””Targeting such disease-causing T-cells in MS is definitely a valid therapeutic approach that should be pursued,” Tse added.
And indeed, this is exactly what HSCT does.
How & why does HSCT cure multiple sclerosis?
As a curative treatment HSCT works by partially or completely erasing the body’s immune system memory. This effects a beneficial change of the body’s overall B- and T-lymphocyte epitope (antigen binding)repertoire, inactivating autoimmunity (making the body’s immune cells “antigen naive”) which results in restoration of immune self tolerance. This is often referred to as “resetting” the immune system which stops the underlying MS disease activity & progression. Once achieved, the body then has a chance to repair (or compensate for) existing neural damage that is not undermined by further MS disease progression, often resulting in substantial and lasting symptomatic improvement.
The interesting fact here is that it is the chemotherapy which is effecting the curative aspect of the treatment by wiping out long-lived T- and B-lymphocytes of the body that carry the faulty autoreactive memory so they may be replaced by naive, unprogrammed and self-tolerant non-autoreactive lymphocytes generated by the bone marrow. The stem cells themselves are not the specific reason for the curative effect of this treatment. The re-infusion of the hematopoietic stem cell graft is simply for the purpose of re-establishing the bone marrow which has been ablated as part of the chemotherapy conditioning. So in effect, the stem cells are not curing the patient of MS, but are instead “rescuing” the patient from possible mortality as a result of the curative chemo conditioning regimen. This is why the stem cell graft is sometimes referred to as “stem cell rescue.” It’s just rescuing the patient from near certain death (for myeloablative protocols) due the treatment and adding an extra measure of a safety factor for non-myeloabltive protocols.
The takeaway concept here is no chemotherapy = no cure. This is why simply injecting stem cells into the body does not render the body’s immune system self-tolerant as is required to stop the underlying MS disease activity. Sorry. No free lunch here.
And the clinical data. . . . .
Clinical research into HSCT as a treatment for autoimmune diseases (and MS specifically) began in earnest approximately 20 years ago in the early 1990’s in Europe. Here is an early report of a retrospective compilation of many of these clinical data:
University of Basel, Basel, Switzerland – Immune ablation and stem-cell therapy in autoimmune disease Clinical experience (published 2000)
Then in the 19990’s Dr. Richard Burt (formerly with the US NIH and currently a researcher at Northwestern University Feinberg school of medicine, Chicago) whom became interested in the work began the first US-based HSCT clinical trial work with myeloablative hematopoietic stem cell transplantation (HSCT) for MS. He later (collaborating with Prof. Shimon Slavin) worked to find a way to maintain the efficacy and to reduce the (then) mortality of the treatment by switching to astrongly-lymphotoxic (and milder myelotoxic) chemotherapy protocol with either (Fludarabine + Cyclophosphamide or Campath-1h) or an alternate therapy of a combination of (Cyclophosphamide + Anti-Thymocyte Globulin (rATG)) which does not kill off 100% of the bone marrow; reducing the period of time the patient must survive with degraded (not ablated) immune function and a corresponding risk reduction of possible infectious treatment complications. This work continues today with the completion & evaluation of a NIH/FDA phase II Clinical Trial and an ongoing randomized phase III trial with very good consistent curative results.
A graph I created that shows a comparison of the relative engraftmentrecovery profile and corresponding innate-basic immune function recovery for both myeloablative and non-myeloablative (lympoablative) protocols:
Dr. Richard Burt, Northwestern University Feinberg School of Medicine, Chicago:
To watch videos about the work at the Division of Immunotherapy and Autoimmune Diseases (DIAD), please click on the link below to access an assortment of informative videos:
Lupus and MS Treatment with Adult Stem Cells with Dr. Richard Burt – ABC News Video (watch past the Lupus patient to see the MS patient treated with HSCT)
Hematopoietic Stem Cell Transplantation: A New Therapy for Autoimmune Disease
Phase II FDA trial – MIST (Multiple sclerosis International Stem cell Transplant) phase II clinical trial – Hematopoietic Stem Cell Therapy for Patients With Multiple Sclerosis
Clinical Applications of Blood-Derived and Marrow-Derived Stem Cells for Nonmalignant (Autoimmune) Diseases [also lists relevant clinical trials and overall results summary on page 4]
Stem cells to treat MS – MSRA Public Lecture – A/Prof Richard Burt
Part 1 -http://www.youtube.com/watch?v=s3TgPFy1Ozo&feature=related
Part 2 -http://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel
Part 3 -http://www.youtube.com/watch?v=8mUwCvSWD14&feature=channel
Shortly following some of the initial work done by Dr. Burt, Dr. Richard Nash, a noted immunologist at the Fred Hutchinson Cancer Research Center in Seattle (where early bone marrow transplantation was pioneered in the US in the late 1960’s) also became interested in HSCT as a means to treat autoimmune diseases. He has already completed several studies and a phase I clinical trial (separate from Dr. Burt’s work). He is currently running a myeloablative HSCT phase II clinical trial (all patients have already been treated) called HALT-MS (listed below, and is also substantially similar to the same treatment protocol that I received). He will soon be starting the randomized phase III clinical trial for the myeloablative (BEAM) protocol.
Dr. Richard Nash, Immunologist, Fred Hutchinson Cancer Research Center, Seattle:
And an excellent overview of the MS treatment they have developed (and which I received). . . Stem Cell Transplantation in Patients With MS in the HALT Trial
And a peek into (Feb 2011) update on the clinical status of a few of the typical patient’s status (that basically says that all MS disease activity & progression continues to be stopped four years following the transplant procedure):
An older paper that reflects the much earlier (and is now less relevant compared to the current phase II/III clinical trial data) work that I provide for historical purposes – High-Dose Immunosuppression and Hematopoietic Stem Cell Transplantation in Autoimmune Disease: Clinical Review
By the way, the following link is of a nice (short) video of Dr. E. Donnall Thomas’ Legacy of being the first pioneer to successfully perform bone marrow / stem cell transplantation on human beings for treatment of cancer at The Fred Hutchinson Cancer Research Center in Seattle. He deservedly won the Nobel prize in Medicine in 1990 for his work in this field that has directly led to to HSCT for auto immune disorders:
Dr. Burt’s approach is lymphoablation with autologous HSCT transplantation. Dr. Nash’s approach is myeloablation with autologous HSCT transplantation (the protocol I received). The University of Louisville is currently doing a phase I/II study of myeloablation with allogeneic HSCT transplantation with mixed chimerism (i.e. mixing & infusing of differing amounts of both donor and recipient stem cells together for grafting). All three phase II studies in the US to date have already completed all patient transplantations and no one has died as a result of the procedure. Now that the treatments are complete the lengthy & involved follow-up work is being done now to evaluate the patient outcomes. This will of course take several more years until final reports are published. All these programs have already designed the phase III studies and have submitted the program plans to the FDA for approval. Currently Dr. Burt’s MIST program in Chicago is in active randomized phase III patient selection & treatment with others coming online soon.
University of Louisville Phase I/II Clinical Trial – Donor Stem Cell Transplantation (with variable mixed chimerism [mixing both donor and recipient stem cells together prior to engraftment]) for the Treatment of Multiple Sclerosis
There is also a stem cell transplantation study in Ottowa, Canada completed by Dr. Mark Freedman that is currently closed because it has completed treatment of all planned study participants, but currently treats (Canadian) patients outside of clinical trial work. This is an especially relevant scientifically-oriented study because it incorporated a very important control (randomized) arm in the study:
[Dr. Mark Freedman on] MS and Stem Cells: Time is brain in MS
Ottowa Hospital-sponsored stem cell & transplantation lecure video: MS and Stem Cells: It’s happening right now
Part 1 – http://www.youtube.com/watch?v=LGvnZpYKLsE&feature=related
Part 2 – http://www.youtube.com/watch?v=4UG4jgnvjMQ&feature=related
Part 3 – http://www.youtube.com/watch?v=e4kmQ6v_8Yw&NR=1
And there is also clinical treatment being conducted in Australia by Dr. Colin Andrews at Canberra Hospital that is also using a BEAM treatment protocol:
Mother Carmel Turner is first Australian woman to undergo stem cell transplantation for MS (an especially wonderful story because HSCT allowed her to walk again after having been confined to a wheelchair for the previous two years):
And here is Carmel Turner’s You Tube video channel where she has posted videos regarding her HSCT (and just like myself, she appears to be very happy to no longer take medication to treat her MS since her undelying MS disease activity has stopped)
Other information of relevance (in no particular order):
Early highly aggressive MS successfully treated by hematopoietic stem cell transplantation (HSCT)
[I especially appreciate this statement from this specific report. . . “Before HSCT, 61 relapses occurred in 82 patient months; during follow-up, one relapse in 289 patient months.” If you need a slap in the face of the reality of HSCT to cure MS, here is a scientific study report that confirms the data]:
No proinflammatory signature in CD34+ hematopoietic progenitor cells in multiple sclerosis patients [this well-authored paper goes on to make the important conclusion “Our results support the use of aHSCT for treatment of MS.”]
Barry Goudy, successfully treated with adult stem cells for Multiple Sclerosis testifying in front of a United States Congressional hearing on the use of adult stem cells:
Autologous stem cell transplantation for progressive multiple sclerosis: Update of the European Group for Blood and Marrow Transplantation autoimmune diseases working party database
The Lancet publisher contacted me to ask if I would include a link to their website publications portal regarding MS (and neurological issues in general). The Lancet maintains sound scientific standards and ethically responsible publications and I am happy to list thier website publications portal link for your perusal (and they also list technical articles for hemotopoietic stem cell transplantation for MS relevant to my own blog). Also as explained by the publisher, “Your visitors will be able to listen to free podcasts for author interviews and expert discussions covering international issues relevant to (MS) neurology. Here, individuals can learn more through our direct links to free resources such as reviews, opinions, and news throughout the Lancet online community.”. . . .
Last tangential note. . . . . Although it works well for Multiple Sclerosis (and several other autoimmune disorders), an autologous hematopoietic stem cell transplant will not cure every disease. However, it has been shown to have similar (good-to-excellent) curative results for other hematologic-based autoimmune diseases. If I were otherwise afflicted with any of these other types of hematologic-based autoimune disorders (there are likely many more than I have listed here), I would consider seeking the same transplant procedure myself to cure it:
– Rheumatoid arthritis
– Scleroderma (Systemic Sclerosis)
– Inflammatory Bowel Disease (Chrohn’s disease, ulcerative colitis)
– Systemic Lupus Erythematosus (SLE)
– Polymyositis – Dermatomyositis – Evans syndrome
– Hashimoto’s thyroiditis
– Chronic inflammatory demyelinating polyneuropathy (CIDP)
– Graves’ disease
– Autoimmune hemolytic anemia
– Autoimmune blistering diseases
– Autoimmune lymphoproliferative syndrome
– Myasthenia gravis
– Psoriatic arthritis
– Wegener’s granulomatosis
– Sjögren’s syndrome (Mikulicz disease, Sicca syndrome)
– Churg-Strauss syndrome
– Microscopic polyangiitis
– Relapsing polychondritis
– Pemphigus vulgaris
– Sarcoidosis
– Ankylosing spondylitis
– Diabetes mellitus type 1 (but only if HSCT is performed within several months following disease onset)
– Sickle Cell Disease can be cured with a similar HSCT procedure utilizing mixed chimerism with a partial-match HLA doner
Dr. Richard Burt On the topic of HSCT as curative treatment for a wide range of autoimmune disorders:
If you know someone with one of these diseases you may want to let them know about the possibility of a hematopoietic stem cell transplantation procedure as a means to arrest/correct/reverse the progression of the disease so they can make up thier own mind regarding treatment options.
Well, another month has past and improvements are still happening. With that being said, I’d like to emphasize the importance of physical exercise in the recovery process. I would not be seeing the improvements without putting the time in at the gym, or walking. I do something physical every day. At the beginning that might have been just walking to the mail box, with help from my husband to get down the two front steps. Then walking a little more, adding more very, very slowly. The key is to add more very, very slowly, if you over do it you will pay the price. I’ve pushed too hard and it took me 2-3 days to recover, no fun. As you get stronger it’s so easy to overdo it. You start feeling normal and you run one too many errands, or walk just a little too far. Everyone going through recovery will have a story. I remember the first time I went to the store, too soon by the way, I went with my mother and we walked in the house and walked straight to bed. She had to put away the groceries and I think I was asleep as soon as my head hit the pillow.
I started Physical Therapy 1 month after returning home, I had the GP prescribe that. After 8 weeks of PT, I started going to my local gym. I have to be super careful with germs, so I clean everything off before I touch it and then when I’m done. Then wash my hands a couple of times during the workout. I had been working out for most of my adult life, so I didn’t get a personal trainer, but if you haven’t I strongly suggest using one to get you started. Explain what you’ve been through, so they take it slow, you’re not the normal person just trying to get into shape.
So here is where I am as of today. On Saturday I rode my bike for the first time since HSCT, only 2 miles, but rode. The Sunday before I left for Moscow I rode 6.5 miles, so I have a ways to go to get there again. I held off riding for so long because of how weak I was after being in the hospital and balance issues. My balance has greatly improved, so I thought I’d give it a go.
Back in the fall I set a goal to walk round trip across the Big Damn Bridge by the end of April. It spans across the Arkansas River and it’s the longest non-vehicle bridge in the US. It has a very long grade to get to the top, with beautiful views all along the way. Round trip is 1.83 miles. Sunday, I decided it was time and the day was beautiful. I’m proud to say I made it!!! So, thanks to HSCT and a lot of hard work I’m reaching these goals and setting new ones.
If you are reading my blog for the first time, you may want to know I’m PPMS, so I never dreamed I’d actually have any improvements.
Remember no one wants to get well as much as you do! Keep fighting.
VW
Well another month has flown by and I’ve now had my 6 month follow up Neurologist appointment and MRIs, so thought I’d update you.
First, I met with the Neuro at UAMS a couple of weeks ago, this was the first time to see him since I moved to this area just before leaving for Russia. With that being said, he doesn’t really know what my condition was before other than notes form my former Neuro and my before and after videos. Well…I first met with the intern, and he did all the strength test and walking test, and made the comment that my strength was that of someone without MS. 🙂 I still have hyper active reflexes, very obvious, since I almost kicked him in the face. Then he went and spoke to the head Neuro and he came to check me out. He was very interested in my story and wanted information on Dr. Fedorenko and Dr. Burt, which I gladly provided. I then showed him my walking videos and he was amazed. He said to come back in 6 months so we can celebrate more of my improvements. I told him I hope to be walking 2 miles by that time, and he said, he had no doubts that I would. So, that went very well.
Second, I had my MRIs on Friday, so for 2.5 hours in the tube with my head locked down I thought I would die. I’m claustrophobic, so this really is not fun, at all. I had to have him get me out of there twice. Anyway, I did finish and don’t want to do that for a very long time. It appears that nothing has changed since Russia, I still have the 3 very small non-enhancing lesions on my spinal cord, and that’s it. So, nothing new, is good news to me.
Lastly, we’ve been getting the word out about HSCT. I was interviewed on Good Morning Arkansas yesterday morning for MS Awareness Month. Brooke and Diana were interviewed up in PA yesterday, and the segment Kristy Cruise did for 60 Minutes Australia aired a few weeks ago. They were filming that while she was in Russia with me. If you want more, email the stations and lets shake things up.
Here is my Good Morning Arkansas interview, aired March 31, 2014.
I’ve been asked by several people if I could post some additional videos of me walking. Dr. Fedorenko had me as EDDS of 6 when I left the hospital. I typically used a trekking pole for balance and to stop me from falling. I have been still using the trekking pole, but now that the chemo pain is leaving I see it sitting in the closet more and more.
So you asked for them, here we go.
1. Sorry you have to turn you screen for this one. This was taken late afternoon, Aug. 18, 2013, the day before I entered the hospital for HSCT. I actually fell just after she stopped filming.
2. This was taken in Moscow on afternoon, Aug. 17, 2013.
3. Morning – Aug. 19, 2013, at the Vega Hotel, waiting on cab to take me to the hospital.
4. Morning – Feb. 28, 2014, this was the first morning without chemo joint/bone pain. NOTE: I’d not been able to jog in place before, this is a new trick.
5. Evening – Feb. 28, 2014, after going all day, cleaning the house, and had just taken a shower. (Not everyone would count taking a shower, but in MS world that’s time on your feet…it counts)
First I’d like to report that my chemo joint/muscle pain seems to be almost gone. I’d starting having little windows of relief, usually during the night and I only noticed because I’d gotten up and gone to the bathroom. One morning Thomas asked if I’d been walking around the house during the night, I said yes, no pain and wanted to enjoy it for a while. Then I had windows of relief in the evening watching TV, just stood up. JUST STOOD UP! Usually I look like a 90 year old woman trying to stand up. Ok, maybe 100 year old woman, I saw my 93 year old Granddad stand up faster than me this week. Amazing how pain can really zap the energy right out of you. This morning I was up by 5:00 am and raring to go. Had to show my husband my new trick, running in place, couldn’t do that yesterday. I’d say I’m 85% joint/muscle pain free, I do still have spasticity, so that’s why I’m specific about which pain is leaving. Spasticity is still here, but compared to the chemo pain, it’s a walk in the park. Totally manageable, even without any muscle relaxers. I keep wanting to stand up and see if the pain is still gone…yep, still gone.
Me dancing without pain this morning.
Next note worthy topic, my hair. Hair is salt and pepper and very crazy curly. Tight curls, that no matter what you do to straighten it, just makes it curlier.
2.28.14
2.28.14 Hair update
I’m up to walking 1.25 miles a couple of times a week, lifting weights 5-6 times a week and short walks daily. I still need a nap daily, and sometimes that’s for an hour and some days 2 hours, but I’m letting my body rule how long it needs that day. Thankfully my cold sensitivity has greatly improved, because this has been a pretty cold winter here in Arkansas, nothing like what I’m used to in Florida. A little cold this morning, but here is a post of me walking. Note my dog always loves to photo bomb my pictures, so true to form here’s Dottie at it again. Love how the freeze frame captures in mid stride.
So, healing is moving right along and I’m so happy with the progress. Slow and steady.
Everything Is Awesome!!
Kickin' MS with HSCT 
Recent Comments