Wednesday, April 23, 2014

35. Thoughts on Medicine, Ahead of my New Immune System 'Birthday'  (updated April 27, some added info)

“That which does not kill us makes us stronger.”
Friedrich Nietzsche

Nietzsche was stupid and abnormal. Leo Tolstoy

I'm finished with my chemo, just infusing a couple of bottles of fluids that manage side-effects of the chemo right now. Fourth day of chemo was hardest, but not horrible. And I feel like I recovered well by evening and had a restful but also thoughtful night of awake times. I wanted to talk to HSCT patients (and hopefuls) particularly about what I think and have learned in over 3 years of researching options, protocols, variations, outcomes, (and even destinations).  That's more than I will cover even as blathery as I am, but you know where I'm going, so if you're not in for some 'ruminatin', now's the time to exit. 

I have such appreciation for my European heritage and my USA life! We are one world in the end.  And collaboration seems to me to be the greater part of any successful journey - all in it.

But what I want to talk about today with you is the crazy way we are making our lives harder, more fearful, less successful, and even less fair.  

In healthcare today, but this applies to other things as well. Think big picture as we go.

I understand competition is essential and good in ways, but so is collaboration, but maybe we have the headlines wrong. Rather than competing to see who can be the next Super Star, the next Billionaire, the next biggest despot to land grab - that sort of thing, perhaps the next HERO should get top billing.  We don't value true heros who change the course of our shared human experience for the better - not nearly loudly enough.

Jonas Salk comes to mind, though I'm going way back to pull him up and there are surely a myriad of great men and women whose names could go in his hold spot.  I read recently that it is estimated that, had he patented his polio vaccine, his estate would have been worth many many billions of $.  Was that the point?  The faster proliferation of its lifesaving care sans the legal mishmash of patenting meant that  millions and millions of people did not lose their child, and others did not live their lives diminished by polio's ravages. What does one person need many many $billions for, anyway?  Yes, I understand that Oligarchy depends upon being someone with many many many $billions so you can play chess with the world - that is a topic for another day, another forum.

And that brings me to the following comparisons, which are by no means completely scientific and by no means anything other than one patient's experience of 2 separate ideas of medicine. 

My first introduction to HSCT as a possibility came through a really truly great HERO, George Goss. George is a man who has a tremendous science mind, is not in business to make money by explaining, tirelessly it would seem, the HSCT procedure and options over and over and over again, but he does it. And he is my designated hero in my own process to getting my life back, following his own hard won HSCT to cure his MS (he went to Germany for his years ago).

My second HERO is Dr. Richard Burt (second one I found in research, which led to learning also about HERO Dr. Slavin in Tel Aviv, and a string of others).  Dr. Richard Burt is dedicating his life's work to pushing HSCT through the mire that is the current USA FDA system.  And he's healing people along the way.  I would have waited to go to him, but aggressive disease progression and timing (and great luck) brought me to Moscow faster. 

My third HERO (and there are many I'm trying to be brief - bear with me), is Dr. Denis Fedorenko, a young and dedicated brilliant Hematologist here in Moscow who is definitely earning his Semi-Official California Lifesaver t-shirt, one day at a time in the best medical experience I've ever experienced in life to date.  I will explain.  

Now I feel I have to put in a little note here to say there is such a thing as 'chemo brain', I'm told, and I'm a blathering thinker on my own, so if I begin to lose you, please forgive me. I'm trying to put this as simply as I know how today.


I watched many of my friends with CIDP and some with MS go through HSCT over the past 3 years. Some in Chicago under Dr. Burt; some here in Moscow, in Tel Aviv, Israel; Florence, Italy; Heidelburg, Germany, - and a too short but growing list of dedicated clinics for autoimmune HSCT (I'll add George's list at bottom). 

And something is standing out for me in my own process - it's not horrible. Not yet. I know it's not over, but it's not horrible.  

Comparing notes with CIDP-HSCT friends who have gone before, I will say that mine is easier, kinder, and anticipated to be at least (if not more) successful in outcome (the science stats underly that part, too, but that is for another day).  

While Dr. Burt is slogging through his Sisyphean repeat of the protocol laid out 11+ years ago for the FDA process, proving in stages that this works, he seems to (and I don't know this as solid fact) have to stick to the original protocol as he layers cases and cases and data and data to publish and get to the next sticky stage of layers. He is nearly to end of stage II of a 3-stage approval for broad FDA approval of HSCT for broader autoimmune illnesses treatment (which has long been used in other ways, even autoimmune cancers like lymphoma and leukemia, by the way - this is not new science). And will not under current FDA procedure be available at large in the USA until probably 2020, sadly for many.  Even though many insurers in the USA are increasingly on board, efficacy proven, until the FDA approval, the proliferation of clinical application will keep HSCT away from people who desperately need it. There are just not enough hospitals/clinics until FDA says "GO". 

And in this time, Big Pharma has been practically vomiting out more and more serious chemical meds to manage the symptoms of various autoimmune illnesses, making historic record profits unknown to human kind before our modern time. Many of these drugs come with side effects that are - well, you've seen the commercials they run every 10 minutes on USA tv - massive, and read very fast. They are lethal, in spite of whatever short-term intervention of a symptom they do create. It's just masking. It's not healing - its' not curing. Its' not putting people back into their healthy lives.  But it is making enough money to buy FDA, legislator's favors in our USA home Nation, and to delay real HEROIC changes in our overall health. 

HSCT in Chicago is harder.  That fact seems clear to me. And I have first hand info (me) and Dr. Fedorenko's conversations (he highly respects Dr. Burt) and also an unbearable lot of formal medical texts and reports, conference records, etc., etc., to back me up on this.  

While Big Pharma delays and blocks funding and gets in the way of what can be HEROIC work, other Nations are moving forward to treat the illness, find health for their citizens, and productive lives, as well as humane delivery.

Oops. Just a break right here where I felt very Samson-like, and am now totally shorn of my hair - slightly emotional, mostly glad that I can now get in the shower and get on with things. Photos may or may not follow.  But back to my thoughts on the HSCT process


Some differences emerge, all of which cause additional patient discomfort from reports and watching so many go through it, but in the end we're all getting about the same results.

In Moscow, 4 days neupogen to stimulate stem cell production, augmented by anti-side-effect and protective meds to comfort the body and patient through this. CHANGE to earlier post when I thought we did not add more Neupogen during this phase: Yes, also here we have 1 additional neupogen augmentation given daily during engraftment (rebuilding the bone marrow with your stem cells). But not a bit of bone pain for me, as it's also accommodated as pre-treatment in IV.

In Chicago: (from friends) ADDS: One day chemo given ahead of stem cell stimulation phase to enhance/stimulate neupogen's work making stem cells given in advance of the 4 days of neupogen shots. Reports of high output of stem cells (and not) and more bone pain, discomfort.

Also in Chicago: (from friends) ADDS: more days of Neupogen shots during the transplant re-engraftment period to speed engraftment (these are less painful given very slowly, but they push production and they can/do often cause bone marrow pain in many patients).

In Moscow, 4 days chemo:

Also augmented by lots of anti-side-effect and protective meds to comfort the body and patient through this. I never got to where I needed to ask for remedie - it was considered before hand throughout. Discomfort levels: low to moderate. I can't complain at all. All the creative ways I've been thinking of to whine a little through HSCT have been a waste of effort here.  Awesome!

Dr. Fedorenko's Conversation about this:  Optimal for non-myeloablative stem cell transplant: between 2-8 million, though they can do as low as 1.5 million (perhaps lower number more accepted in children?). There is no need nor really any apparent benefit for 62million stem cells or 23million stem cells (as some reported having produced, likely under too much stimulation and with attending bone pain). There is not even much data pointing to an elevated or greater benefit above the 2million mark, though perhaps rebound is slightly faster in some with above 2million re-infusion.  They seem not to be able to confirm a higher infusion makes a patient heal faster, so incidental and more due to patient as individual.  Two million is enough.

CIDP    Dr. Fedorenko's Conversation specific to CIDP patients: We will need one Rituxan upon departure, and he does not anticipate any addional chemo/Rituxan follow-up for CIDP patients  upon return home.

So far so good. I will stop here and tell you what I think tomorrow after I get my stem cells infused back into me. But I think the distinction made above is that while Dr. Burt is using 7 days of chemo, and added Neupogen during post-transplant repopulation of bone marrow (these are moderately painful shots, cause bone pain)  and patient reports more pain or discomfort, both are getting the job done.  

But here in Europe, where they all outrank the USA in World Healthcare Rankings, they have been able to adapt the protocol as research and proof shows it need not be quite so harsh.  

Thanks FDA and Big Pharma for making our USA HSCT patients suffer even in ways that don't profit you!  (expletive!).

Enough for now. I am off to the shower and to try to see what life without bothering with hair might truly be like. I might go Buddhist before this is over. You never know. My Dad's been mostly bald for a long life, and a couple of my sons are headed that way, and my baby grandson is still showing scalp. I hope we can get us together for a 4-generation bald photo!  I'm all in! 


I had chemo brain and bald-girl syndrome and forgot to add these files earlier. I hope they can help you begin to learn more, and see how far we must go to open up facility access for treatment in the USA:

At present patients are vying to get into Dr. Burt's USA FDA-mediated Trial HSCT program - one facility, Northwestern University, CHICAGO:

In spite of Big Pharma's massive hold on FDA and legislator's in effort to keep their HUGE profits rolling in on these illnesses, even insurance companies are willing to pay for HSCT for autoimmune illnesses, but there are no clinics until FDA final approval and that could be 2020 or beyond. Here is a current list of insurance companies we know have paid for patient HSCT at Northwestern, CHICAGO.  The limitation is in how many patients are able to get into facility, not on whether it's safe, works, should be available.  There is, unfortunately, in the current USA healthcare environment, no money to be made curing illnesses. 

And lastly I wanted to add a semi-current list HSCT patients keep adding to as more and more excellent fully sanctioned and authorized, (checked out one by one by George Goss and others, not just their own National and  International Boards and Organizations). 

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