Sunday, July 3, 2011

18 month report - Sustained Cure Status

Future regained!

I know that a lot of people with MS will recognize this box of medication pictured here that I had forgotten about and found lingering in the bottom of my refrigerator as we were cleaning it out this past week (click to enlarge):

I post this picture mainly for my own entertainment & reminder of my previous life prior to my transplantation that completely stopped my MS disease activity & progression. I had taken Avonex interferon for 15 years prior to my HSCT procedure. Avonex, just like all the CRAB drugs only "slows" or "delays" the progression of MS symptomatic deficit accumulation by average of 30%, but does not stop the disease. As of today only HSCT can accomplish this. You'll notice on the prescription label that this box was issued in September of 2009, a few months prior to my transplantation. I used two of the four dose packs from this particular box and the remaining two dose packs have been sitting there in the bottom of my refrigerator for the past year-and-a-half. Ever since my HSCT procedure I have never again taken any MS drugs of any kind because they are no longer necessary or helpful (which is also the case with virtually all HSCT recipients). My underlying MS disease activity is gone. The curative effect of HSCT has returned to me my future because I no longer live with the uncertainty (and fear) of what might happen due to MS and the disease progression is no longer a part of my life. And have I mentioned how happy I am that after 15 years of chronic injections I no longer have to use a syringe since 2009 following my HSCT? Yeah, I think I mentioned that earlier. I don't mind to say it again though. This has contributed so much to the enjoyment of my daily life! (I get my own pleasure from acknowledging it out loud.)

So this is where you will come to understand my realistic reporting of the results of Hematopoietic Stem Cell Transplantation (HSCT) relative to my own MS-related disability. I'm not going to be overly-rosy or provide any exaggeration in the reporting of my current status. Here are a few basic facts as of today, a year-and-a-half since my transplant:

  • My underlying MS disease activity is (still) 100% stopped. No further progression, relapses or advancing MS activity whatsoever. This includes no new lesion activity on MRI scan. HSCT has unequivocally and unquestionably accomplished my primary goal of halting the underlying MS disease process and has restored immune self-tolerance to my body. An especially amazing accomplishment considering that I was in a (secondary) progressive phase of the disease in which it is virtually unheard of to improve from such a state. I currently feel better than I've felt in many years.
  • I no longer take any form of medication or treatment of any kind for Multiple Sclerosis. As of today I just take a multi-vitamin and keep an eye on my cholesterol level. It is truly amazing how much the enjoyment of my life has improved by NOT ever again having to inject interferon (Avonex) medication! I calculate that I self-injected IM (long needle!) interferon more than 750 times over 15 years. Although used to the injections, I would be lying if I said I enjoyed it. So happy that I no longer have to do this.
  • I've already had my first two of three rounds of vaccinations required for those receiving a myeloablative HSCT. I will have my final round of vaccination injections at 2 years post-transplant that includes the all-important MMR (you can read the 1 year update posting to understand more on this topic)
  • Other than curing my MS, the only other probable permanent side effects I have experienced from the chemo conditioning regimen are 1) Sterility (before my treatment I expected this to happen and I banked my sperm for the possibility that my wife and I will have another child), and 2) Something that I did not expect is that my body lost most ability to produce testosterone (leydig cell damage from the chemo) that I have been able to easily overcome by using a daily testosterone trans-dermal skin patch (Androderm) to restore testosterone levels to a normal range. This has proven to be painless, near-effortless and not-at-all inconvenient. It just costs money, but still a heck of a lot cheaper than the interferon I no longer take. [Later update: My body later completely recovered endogenous testosterone hormone production at +2.5 years and I stopped using HRT because it became unnecessary.]
  • All of my pre-existing MS symptoms have improved (reversed), and continue to do so slowly over time. However, the rate of improvement now appears to be slowing as compared to the first year-to-eighteen month period directly following my transplantation. But in the famous words if Kirk Garrison, improvement is still improvement and this trend follows the "expected" asymptotic curve of diminishing returns over time. That basically means that I have experienced a tremendous amount of improvement in the first 12-18 months following my HSCT and now likely I will continue to see additional improvement over time, albeit more gradually from this point forward. The general shape of this symptomatic improvement curve shown here is fairly representative of what can often be expected for MS patients following HSCT (and is what I am experiencing). However I'm sure the slope & amplitude of this curve will somewhat differ for each individual based upon several factors that includes the phase of disease activity (RR, SP, PP) and relative total disability at time of treatment. (click to enlarge):

  • Of course the curve shown above is just a general theoretically predictive average curve which may somewhat differ for each individual (although the general properties of the asymptote should be consistent). Actual patient outcomes rarely follow the exact smooth-shape predictions as shown, so I have created another similar graph that more accurately reflects the reality of my own absolute symptomatic improvement (expressed as EDSS) over time. You can see that there is some level of normal daily fluctuation in the status of the symptoms that remain (mainly related to my leg strength), in which some days are a little better than others. But the adage that holds true. . . . "The worst symptomatic day today is better than the best symptomatic day just prior to my transplant." I think this graph accurately reflects this. (click to enlarge):

Here is Dr. Richard Burt explaining this general phenomenon:

To provide a seamless continuation reporting of my post-transplantation health status, I just copied the following list from my one year report posting and have added my current 18 month post-transplantation status update:

Sensitivity to heat
  • 12 month report - Completely resolved - This was one of my early symptoms that completely improved and disappeared. For years I could not stand the heat and I never felt cold, even in near-freezing weather. Prior to my transplant I could only tolerate lukewarm showers. Since my return from Germany I now love taking hot showers. And just like normal people without MS, on a cold day I feel cold. (I now wear warm jackets that I haven't worn in years.) I also am no longer afraid to venture outside with physical activity on a warm summer day. Now I can handle the heat and I now respond to temperature variations like I did before being diagnosed with MS in 1995.
  • 18 month update - OK, for this specific symptom I can add some descriptive modification. Now that we are entering some warmer summer weather here in July I now have come to better realize (for me) there is a difference between "feeling hot" and "being hot." I no longer "feel" hot in an abnormal way. Prior to my HSCT I felt hot continuously, all the time. Even when it was near-freezing temperatures outside I always wore short-sleeve shirts when everyone else were wearing sweaters & jackets. People sometimes commented to me that it seemed strange to see me sweating on a cool day. Things are different now as I can explain with a simple example that is now characteristic of my current heat-tolerance status. A few weeks ago I went to the beach with my wife and son just north of San Francisco (where it is usually never hot). The outside temperature was approximately 65F (18C) with average humidity. I laid down on a towel while my son ran around and played in the sand. Take a closer look at this photo my wife snapped of me (click to enlarge):

  • My wife was shocked and told me that in the seven years we've been married she has NEVER seen me wear a sweater AND a Jacket (I would have been sweating in the same situation prior to my HSCT). I guess this serves as confirmation that the way I "feel" in response to temperature is much like any other normal person would respond (my wife was also wearing a jacket). Here comes the important additional info. . . . However, when I actually am in a hot temperature environment (such as summer in the sun) it still adds a "little" (but noticeable) to the fatigue I feel in my legs (only). But I do have to admit that this specific "fatigue-adding" effect is nowhere near as severe as compared to prior to my transplant. So things are improved. Before it was a foregone conclusion that all of my symptoms would worsen substantially when I became heated. Now only my legs (no other symptoms) just feel a "little" more fatigue when hot, but not as badly as compared to before my HSCT.
Bi-lateral leg parasthesia
  • 12 month report - Completely resolved while at rest - This was also one of my first symptoms to disappear. For ten years prior to my transplant my lower legs never stopped tingling from the parasthesia. This used to be a 24/7 effect no matter where I was or what I was doing. However, now I no longer feel it under normal resting circumstances. Currently sometimes I do get some lower leg parasthesia following an arduous and / or physically demanding & stressful trek but resolves soon after a short rest.
  • 18 month update - Actually it is better now. I don't experience parathesia at all, ever. Even when stressed from an extended walk. The effect is 100% resolved. Nice.
  • 12 month report - Completely resolved - Although not a frequent occurrence, at random times I would experience the room "spinning" (previously would usually happen at least once a week, and occasionally more often when I tilted my head far backwards). This has not happened at all, not even a single occurrence since returning from Germany following my transplant.
  • 18 month report - Unchanged. 100% resolved.
Lhermitte's sign (and ocular "flashes" due to eye movement)
  • 12 month report - Completely resolved - Although it did not happen often, I did occasionally experience this phenomenon. It hasn't happened at all since my transplant and return from Germany.
  • 18 month report - Unchanged. 100% resolved.
Resting fatigue
  • 12 month report - Completely resolved - I know this symptomatic description sounds like an oxymoron. How can one feel fatigue while resting? And that is part of the insidious nature of MS. Often while just sitting and doing nothing but watching TV while sitting on the couch my body would feel exhausted like I just finished a ten mile uphill run. I hated this phenomenon because I could do nothing to escape the effect or do anything to not feel physically fatigued. But following the transplant procedure I no longer experience this type of fatigue onset. I still get fatigued when doing physically stressful things such as a very long walk, but never does it occur when I have done nothing stressful to provoke this unwarranted effect. A major improvement to the enjoyment of my daily life.
  • 18 month report - Unchanged. 100% resolved.
General fatigue
  • 12 month report - Substantially improved - My general fatigue level (especially while doing activities with physical exertion) is substantially reduced & improved. I don't know how to quantify this improvement, so I just have to provide a qualitative description. I simply don't tire and feel fatigued as much as compared with the time prior to the transplant. Another improvement that allows me better enjoyment of my life on a daily basis.
  • 18 month report - Improved further, now better than 12 month status. Again, I don't know how to quantify this so all I can do is to provide a qualitative description. It's just better.
Ataxia / balance
  • 12 month report - "Mostly" resolved - At least now I can walk without looking like I'm drunk all the time, which was a problem before the transplant. I estimate that to date these associated symptoms have improved approximately 70-80%.
  • 18 month report - Further improvement. I estimate that this symptom is now 90% - 95% resolved. I suspect after another year, or two it will be 100% resolved since this continues to slowly improve.
Hand sensory deficit & weakness
  • 12 month report - better than 75% improvement - I'm right-handed and for about three years before the transplant the weakness & (lack of) feeling in my hand(s) (especially my right hand) prevented legible writing and so I never communicated by the printed word except by using a computer keyboard. Now I can write again with pen & paper. It's nice to personally write my greeting card messages this year, although I still find that using a computer keyboard is easier (who doesn't?).
  • 18 month report - Further improvement. My hand strength & feeling is now recovered approximately 90% from worst-baseline prior to HSCT. Not completely recovered but now I can fasten / unfasten all the buttons on my shirt by myself. That was surprisingly difficult before my transplantation and I often previously asked my wife to fasten the smallest buttons (such as the cuffs) that I had the most trouble with. Don't have to do that anymore. I can take care of those myself now.
Foot sensory (feeling) deficit
  • 12 month report - Mostly still with me - My feet have been about 75-80% numb for a long time. This prevents me from balancing on one foot. Currently the numbness feeling is very slowly improving. Not fast reversal, but I can definitely notice the slight improvement. I'll report on this again over a longer period of time. I suspect the slow improvement will continue for several years.
  • 18 month report - Improved further even though still evident. It still is not quick reversal, but now I can balance on one foot "just" long enough to get my pants on while standing up. Although I still am unable to stand indefinitely on one foot, I'm happy to see this modest improvement.
Leg weakness
  • 12 month report - This is still my main symptomatic complaint that makes up the bulk of my evident MS symptoms. Although my leg weakness (especially after longer walks or physical exertion) has gotten better following my transplant, I have noticed the slowest improvement in this area of deficit. The good news is that I can walk further and stand for a longer time than before treatment without stopping & sitting to rest. So there has been improvement but it is to a much lesser degree than all of my other pre-existing symptoms. Again, I expect to see continued very gradual symptomatic deficit improvement over the next several years. I will report again as things change (or not) over time.
  • 18 month report - Still my only symptomatic complaint of any consequence (this is the only pre-existing symptom that matters to me anymore. . . . the others are now inconsequential). My leg strength and ability to to walk long distances is still limited, but I have still seen improvement. Prior to transplantation I was limited to several hundred meters walking distance until I needed to stop and rest. Now I can walk nearly two full kilometers (perhaps more?) before needing to stop and rest. That's better than a 500% improvement and has provided me the most significant benefit to my daily life. I hope to (and probably will) see further gradual improvement over the next couple of years. I still can't run a mile like I dreamed about while I was in the hospital, but it is still within the realm of possibility if this slow improvement continues for an extended period of time. But even if I am unable to do so, I'm quite happy with what I have accomplished so far.
Additional comment
  • [12 month added comment - Someone else told me that probably the reason these last two symptoms are the slowest to improve is because the nerves to these areas (legs + feet) have to travel the entire length of the spinal column and have been subject to the maximal MS damage over this extended length and hence will take a longer time for the body to repair/compensate for the existing damage. I don't know if this is actually correct but it seems to make plausible sense to me.]
  • [18 month added comment - the previous comment appears to fit the facts. I think maybe it is correct. Or at least I'm buying into the concept. (Thanks Erin!)]
EDSS score
  • 12 month report - 1 point improvement (so far) - Immediately prior to my HSCT I was at an EDSS of 3.5. Now one year post transplant I am an EDSS of 2.5. So I have now fallen into the category which neurologists consider "significant improvement" of my disease status (an EDSS improvement of >1.0). This still amazes me because people with SPMS (was me) virtually never see any improvement at all, EVER! Furthermore, the HSCT studies to date indicate that symptomatic improvement following HSCT continues for several years following the transplant. I'm now within striking distance of achieving my goal of being EDSS of 1.5 (or better) within the next couple of years. No guarantees. But if I were a betting man I'd say that it is entirely possible.
  • 18 month report - 1.5 points improvement (so far). I'm now at an EDSS of 2.0. As of today that's mathematically a 40% improvement as compared my pre-existing (pre-HSCT) status of 3.5. The rate of improvement has now noticeably slowed (as expected), but even additional slight improvement over time could eventually get me to my original goal of EDSS 1.5. If that happens in another couple, or several years, I'm golden and grateful! But no need to look a gift-horse in the mouth. I'm already satisfied & appreciative with what I have accomplished so far.

The future I lost 16 years ago when diagnosed with MS is now back. Because the HSCT procedure has completely stopped my underlying MS disease activity & progression I have regained enough certainty of the future that I can now better plan my life with my family!

No comments:

Post a Comment