12 Month Update

12 Month update:

Thank you to the thousands that have followed my progress for the past year.  I want to close the loop with an update 12 months post-transplant. This community is strong and growing and we rely on the knowledge and experience of others to shape our strategies in our collective attempt to find relief from the effects of MS and all other demyelinating and autoimmune diseases.

It is clear that 12 months past my "stem cell birthday" I have not achieved the desired results to either obtain some improvement in preexisting physical deficit or even to control progression of the disease. Dr. Richard Burt was forthright before treatment that my condition was not optimal for success based on his experience but he was willing to perform the transplant if I so desired. Like all of you on the front end of HSCT, I believed all I needed was an acceptance and I would definitely prove him wrong and achieve the success I sought. That didn't work out the way I planned.

Shortly after my arrival home from my on and off 8 weeks in Chicago I felt a new symptom. I had experienced L'hermittes sign intermittently since diagnosis but for the past few years I had been free of any serious pain from the electricity exploding down my legs straight to my toes. However, the first Saturday after I arrived home sitting at the kitchen table I moved my head in a normal direction and there it was painful electicity escaping my spinal cord and lighting up my right leg with intense pain. To say the least I was surprised.  I immediately embarked on a Google search to look for an answer.  Google actually said high dose chemotherapy could cause this symptom. The symptoms were present most days thereafter but usually dissipated by early afternoon. I experienced 6-8 per day and while inconvenient and painful they were not overwhelming. Unfortunately, 12 months later the L'hermittes occurs in my right leg every 6-8 steps. In the past month it has begun in my left leg as well. This too has started slow and intermittently and hopefully won't progress to the extent of my right leg.

To summarize my condition after one year, the rapid progression I have experienced since stopping Tysabri in May 2011 has not subsided. Except for a brief reprieve of symptoms and progression after HSCT due to eliminating my T and B lymphocyte count, my MS is more progressive than ever.

The intent of this final update to the HSCT blog is not a woe is me narrative. For sure my physical condition is poor and deteriorating rapidly. The poor strength in my legs have me full time using a cane and sometimes two and I can barely walk 15-20 feet before needing to rest. I was fitted earlier this week for a power wheelchair to get me to and from work and allow me to get around my office without my employees staring at me with disbelief and worrying for my safety from falling which I do a few times per week. A power chair will also allow me to get down to the gym to workout in my office building without suffering anxiety about not being able to walk out to my car to get home after a brief workout. 

The fatigue in general is difficult and effects walking, writing and holding items.  Dressing is a real chore especially buttons which usually take 5-10 minutes to complete one at a time.  MS progression has real impact on all personal relationships. My paralysis is happening too fast to even contemplate or understand so it hasn't really had a major impact on my emotional state. 

I read a lot these days favoring non-fiction. I just finished a great book called Abundance by Dr. Peter Diamandis. This piece is a fascinating description of the progress our civilization has made in the past 100 years particularly in areas of health, energy and poverty. This book gave me great strength to reinforce my strong belief in how very lucky I am to have had the life, love and relationships that God has blessed me with. Diamandis reports that each year almost 2 million children die due to diarrhea caused from contaminated drinking water. These children are mostly from sub-saharan Africa and I guarantee none of them have ever been to Disney World or enjoyed the privilege of a formal education and countless other blessings God has granted me.

If this all ends today (and I hope it doesn't) I have been luckier than 99.9% of all that came before me on God's green earth. This disease is bad and life altering but I am proud of my achievements and have enjoyed life more than most have even had the chance. I have 2 great kids, I am a CEO of a corporation and I finally bought a beautiful house.  I achieved the American dream!!!

Many are wondering how do I feel about HSCT for MS. Would I do it again? The answer is, I feel great that this option is available for so many suffering from MS and the dozens of other autoimmune diseases it helps. This treatment undoubtedly works for most if performed in the early stages of their disease. Many people I respect believe in their heart it's effective for more than those in the earlier stage of their disease but I'm not convinced. I was fortunate to be accepted and treated by a pioneer in this treatment and he's convinced it does not work for those in the progressive stages of MS. I believe him. I am sorry I followed my heart and not my head and received treatment for what I knew was progressive disease.

Having received Cytoxan during treatment has excluded me from a treatment clinical trial designed to treat my progressive disease and it also has made my return to Tysabri more risky to develop PML. I am NOT sorry I took an aggressive approach to managing my disease and if it worked I obviously would be writing a very different post, but it did not. The odds were significantly against me and at a minimum I should have pursued a full myeloablative protocol. There were good reasons why Dr. Burt and Chicago made sense for me, and the $200k Dr. Burt brought to Northwestern University hospital for my treatment is a very good reason for him to have accepted me.

So what's next? I continue to scour the Internet looking for emerging treatments. In my heart I KNOW within the next 10 years one or many treatments will be on the market to assist the body to develop oligodendrocyte progenitor cells and ultimately regrow myelin to cover the stripped nerves damaged through years of persistent attacks to my CNS. What number of my axons will still be firing to take advantage of these treatments is to be determined. I do all I can to keep myself in condition for the long haul. I don't drink or smoke and I have eaten more raw vegetables, seeds, nuts and fruits in the past year than I did in my first 42 years combined. 

I have tried many treatment modalities to manage my symptoms such as acupuncture, massage, trigger point therapy, rolfing, chiropractic care, applied kinesiology and sacro-cranial therapy.  I see a nutritionist to manage the 2 dozen vitamins and minerals I take each day. 

To all of you on the front end of your journey to and through HSCT I wish you the best.  Be smart and understand the science, treatment protocol differences and thoroughly evaluate the incredible impact this procedure will have on you and your family. 

To good health!

Kevin

6 Month Review in Chicago

This past week I visited Dr’s Burt and Balabonov in Chicago for my 6 month checkup.  My transplant was 5/21 of this year.  My trip was worthwhile. I met Burt in the AM and in his straight to the point, researcher type communication style said he was sorry he hasn’t helped me.  My walking and coordination is worse than pretransplant.  He said most of his RRMS patients are showing good progress at 6 months.  He and I discussed before treatment in April that in his opinion I was transitioning into progressive disease and successful outcomes are not as common.  He told me he does not recommend further immunosuppression at this time and believes my MS is "no longer active" meaning it is now neurodegenerative and beyond the reach of any approved MS medication designed to mitigate progression.

We got into a debate regarding the use of Solumedrol (IV steroids) after rATG during the conditioning phase of HSCT. He questioned why I refused steroids during chemo and told me he will no longer allow patients to refuse solumedrol. I pushed back and reminded him I took several "rounds" of solumedrol during the conditioning phase but after 5-6 days of ceaseless hiccups I was tired and wanted a break. He informed me the 2 identified reasons for treatment failure are SPMS and fever after rATG. I had both and while solumedrol did reduce the fever I obviously shouldn't have been the one to make the decision regarding treatment options particularly in the fog of chemo I was in. I knew from steroids over the years they usually cause me hiccups so among the gallons of liquids pouring in to my body I was confident that was the culprit.

He told me hjs study results from the phase III MIST are very good and he will publish soon. Burt works with a Neurologist from Rush University for all of his HSCT patients. I saw him in the afternoon and he was more positive. He told me I shouldn't expect improvement for a while longer and that they usually occur between 1-3 yrs post treatment. I had met Dr. Balabanov before treatment and he was not nearly as emotive as he was this visit. I got the feeling Burt talked to him between visits and asked him to be more positive than he was although that could just be my NY cynical conspiracist predisposition... Burt actually came out into the waiting room (I was waiting to go back in to complete the memory tests and the famous "pick up the pegs, drop them on the desk and floor and pick them up to put them in the hole test)... to make sure I went to see Balabanov that day.

Either way I left Balabonov feeling better than when I went in and at least I have "hope" for several more months. Above all I'm not sorry I did HSCT, still committed to live each day to the best of my ability and will continue to pursue all reasonable options to seek relief.

Before I traveled to Chicago I completed follow up MRIs for comparison to pretransplant MRIs.  My brain showed one new lesion (6 total) and my C-spine scan showed increased signal intensity.  The challenge here is to determine if this progression occurred during the 6 months between the last MRIs (11/11) and the HSCT (5/12).  There is a good chance the progression occurred before transplant and my symptoms are a result of the lesion and signal increase pre HSCT. 

Nothing else to report for now.  Work is good, home life is good and after the incomprehensible events in Connecticut Friday I am ever thankful I woke up today with our two happy, healthy kids in their beds snug as bugs in rugs!  Thank you God!

Day + who's counting anymore!

I'm just past the 4 month mark post HSCT. I feel progress in different ways. I have more days of decent typing dexterity, straighter walking and the all important and scientific study measuring how much of the bottom of my feet I can reach with my sponge in the shower... I bet you're all a bit surprised I'm capable of scientific experiments and about twice as surprised I use an exfoliator in the shower...Both are true.

Most days it's impossible to hide that something is amiss with my walking but I think I'm handling it better. Stairs continue to baffle me and there's no disguising I need to take them slow. If there's more than 2-3 I need a railing to get down safely. I have recently discovered peace in using a cane in public not only physically to support the inevitable missteps but psychologically to obviate my innate instinct to try with all my might to appear that I'm not defective. When I use a cane it's out there for all to see. I get a lot of stares and an occasional question about why I'm using a cane like yesterday at my son's game a parent asked me "did you get hurt or something?" with the emphasis on something. I gave the usual retort, some days my legs don't work so good.

The big question is whether the HSCT has improved my disease from pretransplant condition. The answer is, the jury's still out. I know I'm worse than I was in October 2011 but that was after I stopped Tysabri and I had further progression before HSCT in May. Last year at this time we were waiting to move into our house and we lived in a 2nd floor apartment. There were 20 steps to get up and down and I could get down without the railing consistently. I have an appointment in November with my Neurologist at which time I will go for a brain and C-spine MRI. The results will show if any additional lesions have appeared in the past year.

The most important aspect of my recovery is how close I am to stressful situations. It is amazing how even the slightest stress will immediately impact my ambulation, leading to more stress, leading to more physical problems...

That's all for now. I will update again after my MRI's in November.

Day +73

During the research, application and…waiting… stages for my HSCT treatment I read several blogs from people who went through the procedure. I followed them closely absorbing every morsel of technical knowledge while attempting to grasp the emotional nuances of going through this difficult process. There’s a consistent theme in most of these blogs that upon arrival back to their respective homes such as California, Texas, Oregon, Australia and many parts of Europe, the postings drop off precipitously and without warning.

I believed that when HSCT’ers arrived home they would begin to feel better and have more time to bloviate about their myelin, their recovery and any other inane topics they determine to be their zeitgeist. This doesn’t usually happen and blog after blog you see days turn into weeks and months between postings leaving us hanging on the edge of our seats to decide for ourselves whether their respective adventures were worth the effort! I promised myself that when I returned from Chicago I would continue to write with dedication and consistency to my tens of followers to keep them abreast on my strong recovery and recuperation.

Alas, on day approximately +73 since my transplant I have posted only a few times since my arrival home and not once in the past 6 weeks. Strange even to myself but true. So you ask, why have I been dragging my feet leaving everyone hanging without the proper ending a story like this should have??? Well, probably because I have been dragging my feet…literally.

The affects of chemotherapy have all but disappeared from my body. Occasionally I’m overcome with waves of nausea but I think that’s usually from my lack of attention to those all too important four words: “best if used by ” in the refrigerator… After all, how can sour cream go bad??? Badaboom! Seedlings of fuzzy hair are now visible on my still shiny head, my lab draws are pretty normal including my WBC count which hovers around 3.5-3.8 (4-10 is normal range) and those crazy chemo induced dreams are now replaced by good old fashioned nightmares about work!! Work you say?? Yes indeedy, on July 16^th I returned to the office full time to prepare for the all-important Open Enrollment season later this year blah, blah, blah. I truly can’t believe it went by so fast. I believe it more today as I opened my pay check to see they began deducting for some of the hours I was out. CEOs just don’t get away with half the stuff we used to. Damn you Enron and Tyco! I was out a total of 52 work days and while I worked for most of that time from home there was still plenty of time for rest and recovery and I'm grateful to my employer for granting me this leave of absence.

I think the best explanation for the elongated delay between postings was my eternal hope that tomorrow, or the day after the BIG breakthrough would happen and I would post a video of me sprinting through the streets. My friend Chad an HSCT’er from Oregon posted not long ago that he was able to “run down the street” after his daughter. Those aren’t just words to me, that thought slowly oozes through my mind like poured gravy on mashed potatos (make your own joke here). Another blogger Andrew from Australia recently posted a video on our FB group for fellow HSCT’ers showing him running in a park for the first time in years. His clumsy strides one after another running no more than 20-30 yards in all was emotional to watch. Over and over I watched him go, seeing me in his shoes, understanding how demyelination affects muscles and therefore ligaments and tendons as a result of decreased structural support.

That day for me is not today. It may be tomorrow or next week. Today, while grateful for what I can do, I still yearn for what I could do before, and in truth what others can do that I cannot. I have always yearned for that which hangs beyond my reach. On one of Kurt Vonnegut’s birthdays late in his life someone asked him if there was anything good about getting old and I’m paraphrasing, he said it’s great to be able to walk down the street and not want to bed every attractive woman I see. This is obviously not metaphor for me because I'm a happily married man.  However, with other non-women related topics there are some similarities that with age I'm more accepting and grateful for  what I have. Mr. Grace, Mr. Vonnegut was a friend of mine… You are no Kurt Vonnegut…

Anyway, enough nonsense and back to the matter at hand for the 2-3 people still reading this diatribe. My walking is as clumsy as ever. I still use the cane occasionally but the support I receive having an extra “leg” to lean on is often overshadowed by my inability to relate to my surroundings or more precisely the people who inevitably stare at an otherwise normal looking dude with no leg cast or brace to justify the walking stick. I feel very uncomfortable drawing attention to myself and while the pretend therapist in my mind (Looks more like Dr. Melfi from the Sopranos than Dr. Weston from In Treatment) tells me constantly to block out everyone else and focus on myself, I can’t avoid the stares and I frequently stare back with less than friendly thoughts going through my mind (many of which include using my cane for less than friendly purposes)

So there you have it. What’s new with me?? I can walk today. It is painful to do and watch but I get my ass out of bed, into the shower and to work to support my family as I will do for the next 25-30 years, yikeees! For this I’m thankful to the good Lord above. Some days are better than others. Nights are usually better as my symptoms are less pronounced. Two weeks ago Tuesday there were a few hours in the evening I felt great and my walking was effortless and without pain. An increasing number of people ask me what’s wrong with me and why I am limping? I was at a meeting earlier this week with a high powered shaker and mover in the insurance industry. I was pitching him to start selling our insurance services through his agents and brokers. He was perplexed by my bald head as it didn’t fit my body especially with the peach like fuzz beginning to surface. When he walked me out he was further baffled as to why I walk at half the pace as a normal New Yorker. As we shook hands at the door, it was clear I didn’t make that sale, yet.

What will happen tomorrow??? Anyone’s guess. It is strange for me to be on this side of the procedure because at this point there’s nothing left to do but wait, take good care of myself and ask God to give me the strength to execute his plan for me to the best of my ability. When MS progressed last year this time I had more hope. Gilenya, the new medication I began in October would be great for me! I would see HUGE improvement, but I didn’t. Then I found HSCT and this would surely “stem the tide” on this dastardly manipulation of the immune system, but it hasn’t, not yet. It’s a strange emptiness not having the next best thing to look forward to. This has not been lost on my wife who rides these waves with me. She’s in PR for a month to visit with her family and for a well-deserved break from me (not necessarily in that order).  She comes back in a few weeks, I hope…

Most of my family and friends have fallen off of my blog so those that do read this post are probably either contemplating HSCT for themselves or have a family member affected by MS and are considering this treatment. Heed my words, this is not an easy procedure physically, emotionally or financially. I read many postings on FB from those that are on the front side of this procedure and they would give their right arm to be accepted into one of the increasing number of facilities around the world performing HSCT for MS and other autoimmune diseases. They have hope and sometimes hope skews reality. Scientific studies and data show that this doesn’t work for everyone and particularly for those who have had their particular flavor of autoimmune disease for several years, like me. This IS the answer for some of us, it greatly improves our condition in most of us but it’s not without a serious toll on our lives for a long time. It’s too early to tell what the final result of this treatment will be for me but I see more and more people grasping on to this as THE answer.

That’s all for now. As an optimist by nature it’s difficult to write a less than positive report but the purpose of sharing this experience was to never sugar coat this process in any way. I still do believe I will run again one day, maybe tomorrow...

Day + 29

Just a quick note to give an update on recovery.  I have spoken to many MS'ers in the past couple of weeks who have received HSCT and have provided great support for what undoubtedly will be a longer than expected recovery. 

On the positive side, the affects of the chemo on my bladder have subsided and this week for the first time in 2 months I slept the whole night without a pee run :)))  Also my energy is almost back to pretransplant levels.  Bea and I are up early each day and I put in a good day's work from home.  Most days I'm down to one afternoon siesta for an hour or so which in truth most of us could use each day even without a stem cell transplant! 

On the less positive side my walking is at a level worse than it was before the transplant.  Most days I'm using a cane to get around or a shopping cart if I'm shopping.  It's amazing how much easier it is to get around using a shopping cart.  People can't even tell I walk with a limp.  It gets a little uncomfortable when Bea piles the cases of water on top of me as I'm sitting in the cart at Whole Foods but I deal with it...

I have lost so much muscle in my legs that coordination and mobility in addition to the spasticity has made walking painful and just plain ugly.  Arm and hand strength seem worse than before as well.  Lastly, the L'hermitte's continues down my right leg particularly in the mornings.  It's not as scary as when it first began a few weeks ago as I can kind of predict when it will hit.  It still throws me off balance and I gasp with each bolt of lightning down my leg but it's more manageable. 

I'm dealing with the slow recovery as best I can.  Honestly I thought by now I would be ready to go back to work and moving a lot better  not worse than I was before Chicago.  Walking out to the field to my son's soccer practice today was a real challenge.  It was only a few hundred yards but my body completely locks up making for a walking like motion similar to something out of a Frankenstein movie dragging my left leg along.  After practice on the way back to the car Jose Miguel was kicking the ball down the field than running to it.  It rolled in front of me and I clumsily kicked at it with my right foot.  He said it looked like I had never kicked a ball in my life.  There are moments that are incredibly maddening and make me want to scream but it doesn't change anything.  I played soccer for 10 years and my son meant no disrespect...  He was right.  

MANY people I respect very much have told me it is not uncommon to experience a worsening of MS symptoms for 3 months or so.  No matter how many times I tell myself this will hopefully be temporary it's still frustrating to have gone through this procedure only to be in my current condition.  I'm still confident this was the right decision and I'm hopeful improvement begins soon. 

Tomorrow I will buy the Nintendo Wii Fit as I understand this can help to build stability and strength.  Also I will begin working out in our pool now that the temperature of the water has finally made it north of 70 degrees :))

Although my body is weak my resolve to fight with all the inner strength I have is not broken.  I thank all of you who continue to pray and think of me. 

Day + 18

The past few days have been interesting as the early strength and symptom improvement I experienced upon my return to NY has been followed by a few days where I feel like I did mid week last before my discharge from the hospital. 

On Monday and Tuesday of this week I received 1G of IV Solumedrol each day to attempt to "cool" the L'hermitte's I was experiencing last weekend.  This was very effective and today is the second day without any symptoms.  The steroids created huge fluctuations in my blood counts which have made me extremely tired and weak.  For the past two nights I  have had ridiculous night sweats and my bladder is waking me every 2 hours like clock work.  These same symptoms dominated most of my inpatient admission so I can assume my WBC is back down to a low level as it was while inpatient.  One big positive difference is I have not had fever like last week so I'm able to walk around the house. 

I'm resting all day today and this weekend.  The truth is it's not hard to do as my energy is very low and my legs are very weak and stiff.  I have lost so much muscle through this process.  The weather is perfect and although I wish I were on the golf course or tennis court, resting in our yard with a cool breeze is not terrible.

Although I looked forward to a significant reduction in medications post transplant, this is not the case.  For the next 12 months I need to take Acyclovir, Fluconazole and Bactrim because of my suppressed immunity in addition to the Baclofen, Pristiq, Detrol and Ampyra which treat symptoms of the MS.  I think that's more pills than my 75 year old mother!  The combination of all of these medications has me in a somewhat foggy state and a bad taste in my mouth always but I'm hopeful these will subside in the near future. 

Great weekend to all!!  NY will be sunny and warm :))  I need to get a little color on this body and head to stop scaring the neighborhood kids!

Day + 16

Good things come to those who wait.  The events from over the weekend causing bothersome L'hermitte's symptoms have subsided significantly.  My Neurologist in NY fit me in for an appointment on Monday afternoon and recommended 2 days of high dose steroids 1 gram of Solumedrol to cool me down.  After confirming with Dr. Burt this was ok I received the steroids Monday and Tuesday.  This round affected me more than usual assumably because of my suppressed immunity.  The major symptoms of high dose steroids to me are agitation, insomnity and hiccups but they worked and today I have had a lot less attacks than the last 5 days!!!

After the infusion yesterday I went for the weekly lab draws for Chicago.  I received a call today from one of Dr. Burt's nurses informing me Dr. Burt reviewed some of the results and my white blood count is 36!!!  This is the same WBC count that for 10 days recently was <0.1  The normal maximum level for WBC is 13.  She informed me this is probably because of the high dose steroids and it will  normalize shortly.  She advised it will probably increase my fatigue and she is correct.  Bea and I still did some running around today but I am more tired than the last few days.

Today I broke down and went for the handicapped parking permit.  I have resisted this for the last couple of years but reading posts from fellow MS'ers recently convinced me that this was nothing to be ashamed of.  There was one post from someone who wrote "I'll give you my parking permit but you have to take my MS with it"  I think that was the turning point for me.  Bea and I got the paperwork together and the doctor's note and it was processed within 10 minutes :))  I can't wait for my first opportunity to race some 90 year old lady to the last handicapped spot at the mall!!  Haha!  In truth I will use it sparingly on days that I feel I need it (anyone buying that??) 

As of 4:00 today our pool is officially open.  It's a cool 72 degrees but it's blue and mostly clear!  We ordered a solar pool cover which will be installed next week.  Our pool has great sun exposure all day so I think it will be very effective. 

It's actually nice not to have much to report.  I'm settling into a good routine of working from home, getting some errands done and I will force myself to rest a good part of the day as well. 

I have received some interesting messages recently from blog readers with great questions.  This is why I wrote this so please keep them coming.