Friday, September 10, 2010

9 month report - I'm still cured + immunizations

Yes, the stem transplant I received nine months ago still 100% qualifies as a cure for my multiple sclerosis. No equivocations here. As a foreword, I just want to post a informational news article from the United Kingdom's National Health Service regarding hematopoietic stem cell transplantation to remind everyone that this is not snake oil but is a real MS treatment with real curative clinical results based on real science. (This article outlines Dr. Burt's MIST lymphoablative treatment protocol, but the Fred Hutchinson Cancer Institute's HALT-MS myeloablative protocol (same that I received) shows essentially the same curative clinical results.):

Stem cells 'reverse' MS
http://www.nhs.uk/news/2009/01January/Pages/StemcelltreatmentforMS.aspx

"The researchers conclude that 81% of patients showed a reversal of neurological disability."

My current status update. . . . . Although I still have some residual symptoms (mainly leg weakness) that had arisen prior to my stem cell transplant, I'm still cured of MS. And that means that I have had absolutely no new or further progression of my disease (actually I have had only regression of my symptoms, which I will describe in more detail). I've had no relapses. No added symptoms. No added physical disability. Absolutely none at all. So continuing from my previous 6 month update my MS disease is still "stopped," as I expect it will be for the rest of my life. And just as important, all of my already-existing symptoms continue to slowly improve (reverse). And I mean all of them. This really amazes me because such symptomatic reversal is normally never heard of in secondary progressive (SP) cases, such as mine. Every month that goes by I feel a little better and less MS-afflicted as compared with the previous month as my body repairs (or compensates for) the MS damage that has already been done prior to my transplant. The remaining physical deficit which is entirely attributable to my disease prior to the stem cell transplant continues to lessen in it's severity over time. I now have substantially less fatigue. Where I've had muscle weakness, I get stronger and have more stamina. Where I've had numbness, now I can feel again. Where I've had parasthesia, now it doesn't tingle when I'm at rest. Where I've had some balance problem before, now I can walk without looking like I'm drunk. Where I've had vertigo, the room hasn't spun at all since my return from the treatment. Where I was afraid to go any place that might have too-warm weather or a high temperature, now I can take the heat and don't feel hot all the time. And the most important thing. . . . I can now take my three year old son to the park and play with him, something surprisingly difficult to do before my stem cell transplant.


In short, without exception, every single one of my MS-related symptoms continues to slowly improve (reverse). And this is all while I have stopped all MS medication. After 15 years of use, I haven't taken any MS disease-modifying drugs (Avonex interferon) since November, 2009. Extrapolating from where I am right now I believe that at 2 years post-transplant it's possible I might not be able to tell from my symptoms that I had MS before being cured. Or worst case, although my symptoms are unlikely to dissappear completely (I don't expect 100% reversal) it's likely they will considerably fade into the background and not have a substantial impact on my life. I'm hoping for an EDSS of 1.5, or less. I think its entirely possible, perhaps even likely.

Just a side note about functioning. . . . . I used to be an avid auto mechanic (worked my way through college this way), but for the past several years prior to the stem cell transplant I was unable to do even simple auto repair tasks because I was physically unable due to the MS. However, last month (8 months post-transplant) I was able to crawl on my back, get under my Jeep and change the transmission pan. Not a big job but something I absolutely could not have done prior to my transplant. It's wonderful to be able to regain capability & functioning. Thanks to the stem cell transplant at least I no longer feel useless when it comes to working on our family cars. I'm not sure if I'm more impressed with my new transmission pan, or the fact that I could actually install it myself. I guess both. . . .


Summary. . . . . . . as of today I haven't felt this great in over ten years. It reminds me of my own maxim; "It doesn't matter where you are. It only matters where you're going." And within my horizon (although not quite there yet), I think I'm eventually going to be at the point that it will be difficult to know that I ever had MS.

Onto vaccinations which are required following myeloablative hematopoietic stem cell transplantation. This is required because following the ablation and reconstitution of my immune system during the stem cell transplant conditioning regimen (i.e. chemotherapy) my body's antigen-reacting effector memory B-cells and memory T-cells have lost their antibody production and defense inherited memory. This means that due to the stem cell transplant my body's adaptive humoral immunity can no longer "remember" how to fight the specific childhood diseases that I was immunized against so many years ago. This is the same reason that the immune system is "reset" and no longer mounts an autoimmune attack against the myelin and nerve tissue in my body, and is why I no longer have MS. My body's immune system has "forgotten" what & how to attack my own tissue. A wholly welcome main effect of the stem cell transplant. Getting re-immunized is such a small price to pay for the benefit I have gained.

So recently I met with my regular General Practitioner & Internist, Dr. Dale Yamashita to discuss being re-immunized. I think I mentioned in a previous posting that he is a great doctor, a great clinical practitioner and a wonderful person, to-boot. He is on my list of people that I'd loan my house keys to. As opposed to some other doctors I've interacted with, he has been very supportive in my endeavor to seek a stem cell transplant to cure my MS (I think he understands well the sound underlying science of performing a stem cell transplant to cure MS, and other hematological-rooted autoimmune diseases). His contribution to my overall good health cannot be overstated. He has worked closely with me well prior to my transplant procedure, and now helps me in doing what is needed to get the necessary follow-up care since my return from Germany. I consider him an important part of the reason I am cured of MS and am thankful for his active participation in helping to keep me healthy.

Together with the great practitioner (click to enlarge). . . . .


And here's Dr. Yamashita's bio page from the Kaiser hospital website. If you are a big name Hollywood movie star that can afford to pay big bucks for your own private physician, I suggest you hire Dr. Yamashita. You won't be sorry:

http://www.permanente.net/homepage/doctor/daleyamashita/

Together with the Germany recommendation time frame of starting re-immunizations at 6 months post-transplant, Dr. Yamashita and I also reviewed the US/Canada NIH/CDC guidelines for post BMT recommending re-vaccination beginning at 12 months:

Immunization for bone marrow transplant recipients
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2094895/

There is data on this subject because there are many people every year that receive stem cell transplants for treatment of cancer and they also lose their immune memory and require re-vaccination. Dr. Yamashita went and did some clinical investigation on his own and then sent me the following e-mail detailing the vaccinations I should be receiving along with the recommended schedule (I personally think the three-dose Polio vaccination is the most critical since contracting Polio of which I currently have no defense has such potentially serious implications):

From: DALE TETSUO YAMASHITA MD
Sent: 8/25
/10 8:10 AM
To: George J Goss
Subject: Vaccines

Hi George,

I have the information on the vaccines. From my (US) research, and info from Dr Vempaty [BMT oncologist] as well as one of our infectious disease specialist, it looks like you shouldn't do it earlier than a
year post transplant. But I recall you mentioning that International recommendations are different. I have ordered [in the Kaiser Hospital injection clinic]:

Pneumococcal vaccine at 12 m

TDAP at 12m

TD at 14 m

HIB at 12m and 14 m

Polio at 12 and 14m

Hep b series at 12 and 14 m

I didn't order the 24 month vaccines (MMR, hep b, polio, TD, HIB, pneumococcal) since I cannot order that far in advance. [I will contact him when it's time for the 24 month vaccinations.] You need the pertussis only once. Thereafter, the two subsequent tetanus vaccines are without the pertussis. I think I did this right! Oh, Influenza vaccines require no order and will be starting on Oct 2. Keep your eyes and ears open.

Single page summary of required immunizations following myeloablative HSCT [not required for a non-myeloablative transplant procedure] (click to enlarge):



----- Message -----

From: GOSS,GEORGE J
Sent: 8/25/2010 10:29 AM
To: Office of DALE TETSUO YAMASHITA MD
Subject: RE: Vaccines

Once again, thanks very much Dr. Yamashita.

I now consider you a researcher in addition to a clinician. You have done a wonderful (and complete) job in understanding the necessary immunization requirements. I'll take your understanding as my guidance and wait until a little closer to a year for the first round (I'll probably do it at +10 or +11 months). So thanks very much for ordering the vaccines. We'll discuss again prior to the two year immunization round. But no matter what, I won't forget as the time approaches. I hope you don't mind. . . . I'm going to post your e-mail along with your
picture on my next blog posting. I think there are a lot of people in the cyberworld that are interested in this info and will benefit from your info.

Thanks & regards,

George


Additional comments:

I traded some e-mail correspondence with a friend that also has MS. He forwarded my blog address to a highly experienced neurologist to see what feedback he might have. And the neurologist’s response is along the lines of exactly what I would expect. He writes. . . . .

To define a cure you will need to follow patients for up to 20 years. If MS is an autoimmune disease autologous and allogeneic bone marrow transplant (BMT) may cure the disease. My problem with this is that BMT come with a mortality of ~5% (European Registry data); i.e. 1 in 20 patients will die from the procedure. Alemtuzumab (Campath-1h) is probably as effective as BMT with a much lower mortality; I would estimate the latter to be less than 1 in 500 at present and it may be lower with improved vigilance and monitoring of complications. This is why our centre is participating in the Phase 3 Alemtuzumab trials and have not started a BMT programme.

And my reply to my friend regarding the neurologist's comments. . . . . .

Thanks for forwarding the doctor's response message. A very predictable one at that. I have never known of any clinical neurologist anywhere in the world (except for Dr. Mark Steven Freedman at the Ottawa Hospital Research Institute) that will support a stem cell transplant procedure for MS. Neurologists have no training or specialty in BMT procedures and don't look at the underlying valid scientific principles of the mechanism of disease cause & cure. They just want to keep treating the symptoms, without regard to the underlying cause. That's why the doctors that most support a stem cell transplant procedure for an autoimmune disease are the ones that best understand the underlying etiology, like immunologists. And even this neurologist's comment of a 5% mortality rate (for an autologous stem cell transplant) is straight off the script page, without any value-added thought whatsoever. It used to previously be true, but no longer. Good transplant facilities have a 1% (or less) documented mortality rate for an autologous transplant for otherwise healthy people (like the Heidelberg facility I went to that has a low mortality rate). And also, when he states "(Campath-1h) [a monoclonal antibody rat protien] is probably as effective as BMT," he would know this how?!!! I'm sorry to hear such an ignorant & unsubstantiated statement from the mouth of a board-certified physcian. Can anyone say "conflict of interest?" And actually, Dr. Richard Burt (whom pioneered US-based stem cell transplantation protocols to cure MS) has the opposite view and refutes such a claim that he spells out in this lecture video clearly explaining that HSCT is the superior treatment for achieving the best clinical outcome. . .

http://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel

But what I think galls me most about clinical neurologists that oppose a stem cell transplant for curing MS is that they all seem to think that no one is actually cured unless they can prove it by dying without any new disease activity. That means no one can ever possibly be cured by their own definition, at least until they're dead. How does that help anybody?

I have always been consistent with my definition of a "cure." Just stop the disease (which most doctors call "remission"). So this is why I consider my disease "cured" (actually better than cured because my disease is reversing) and feel I am not misusing the word. I'm glad I stopped taking my treatment cues from the prevailing & common mainstream medical norms and instead juxtaposed my neurologist into the role of "helping" me. That's why I decided to take control of my own disease and get the stem cell transplant. The best thing I ever did for my health.

But anyway, it’s unfortunate that so many neurologists all over the world are so damned closed-minded. If I listened to the prevailing advice (to not have a stem cell transplant) my life would really suck right now, headed for a wheelchair and I'd still be taking drugs to treat my MS that offer no hope of a cure. (It seems like that's the main treatment skill many neurologists have. . . . just prescribing drugs. Sad.) Since my transplant procedure I am soooo happy with my life and happy about functioning with a reduced MS disability load. And that's worth more than money, or an MD's narrow-minded opinion.

4 comments:

  1. Well done George!
    Keep it up, and keep us posted.
    Be well,
    Tony Fonda

    ReplyDelete
  2. Excellent blog, very creative and dynamic, I think that helps sick people to desplay their ideas on other things and stop thinking about the pain suffering and improve health care.

    ReplyDelete
  3. Thanks Judloved. If the info I share regarding my experience helps just one other person, I'm happy.

    ReplyDelete