Sent: Monday, August 30, 1999 7:28 PM
Subject: BMT Update, 8/30/99

Dear Friends,

There continues to be good news about my condition.  In my last major update 
of about a week ago, I described the new BMT procedure that the doctors at 
Pres/St. Luke's are planning for me.  This procedure uses reduced amounts of 
chemo drugs, and employs a sort of biological warfare, pitting the donor 
immune system against my defective stem cells.  The advantages of this 
include a much higher survival rate due to reduced toxicity from the chemo 
and/or radiation treatment.  Sonja Classen, the BMT coordinator for the BMT 
team, is working on getting the approval of Kaiser, my insurer, to pay for 
this new procedure.  The possible hang-up is that it has only been done on a 
limited number of people in the US, and they may consider it experimental.  
While I am getting assurances that they will agree to pay for it, I also have 
a practical backup position if they do not.  Read on.

After hearing about the new procedure, or "mini-transplant", I sent an email 
to Dr. Slavin, the Israeli who developed it.  After a few communications he 
sent the following reply:


Dear David,

I am sorry for a late reply; I was away from Jerusalem and currently in
Toronto for a meeting so your e-mail caught me in between.

Thanks for the information regarding your disease. We are quite excited by
the new options provided by our new conditioning regimen. The new data
using non-myeloablative stem cell transplantation (NST) so-called
mini-transplant is rapidly accumulating and it is difficult to keep on line
records. At our center we have done more than 100 cases for all disease
categories, including yours and we are happy with the results and improve
them constantly, based on the cumulative experience.

Persistent evidence of disease or recurrent disease in mixed chimeras was
treated with discontinuation of CSA or with graded increments of DLI.  Of
15 patients treated with DLI, 10 responded. Todate, with an observation
period of 3-39 (median 24 months) actuarial probability of survival 68% and
disease-free survival at 3 years is 48%. Considering the fact that this
group also includes elderly individuals and patients with resistant disease
that have failed all known anti-leukemia agents, hence heavily beaten with
chemotherapy prior to arrival to NST, this seems quite encouraging. In a
patient like yourself, it appears to me that the risk factors are much
less, hence, I anticipate a better success rate, using a "user friendly"
approach.

Just for your information so that you can see a more complete picture, the
actuarial survival and disease free survival at 12 months were 75% and 70%
in matched unrelated donor (MUD) recipients, which represent a much more
difficult group of patients, respectively. Actuarial survival and disease
free survival at 18 months is 48% in recipients of a second marrow
allograft (a very high-risk group of patients), conditioned with NST, after
failing a previous BMT with myeloablative conditioning, respectively. Based
on our preliminary data, continuous application of NST for conditioning of
patients that would otherwise be candidates for conventional myeloablative
BMT regimen appears justified.

Just for your information in case you would like to consider doing the
procedure at our Center in Jerusalem. The cost of allogeneic blood or
marrow stem cell transplantation, conventional or NST, from a matched
sibling is $77,000, all included. Costs are all flat fees and include all
expenses until the patient leaves the country, including hospitalization of
the patient, outpatient clinic, tests, X rays, CT scans, medications etc,
for as long as required. We have the most advanced technologies for both
stem cell transplantation post-transplant immunotherapy to treat or prevent
disease recurrence, and our methods are currently being investigated for
patients with metastatic solid tumors as well.  With clinical experience
starting from 1986, we have the world's largest experience of a single
Center in clinical application of post-transplant immunotherapy, should it
be indicated, to control minimal residual disease or treat overt relapse,
since we introduced the concepts of adoptive allogeneic cell-mediated
immunotherapy using donor lymphocyte infusion and cytokine-activated
immunotherapy, currently used as routine procedures at our outpatient
clinic.

Please do not hesitate to contact if we can be of help to you.


Well, what does all this mean.  First of all, the NST approach produces a 
statistically much higher survival rate than the normal BMT procedures.  I 
have not previously released these numbers, but the best available studies 
indicate a 1 year 30% survival rate for non-related donors and a 40% for 
related donors.  It appears that my chances of getting through this have just 
gotten a whole lot better.  Since the NST survival and disease free survival 
rates at 1 year are 70% and 75%, and since I am in a much better position to 
survive than the typical people included in these results, I figure that my 1 
year survival rate is at least 80%.  To put this into perspective: About 1 
month ago, before my brother beat the odds and turned up as a perfect match, 
I figured that my chances of surviving this were quite low.  I had 
indications that some of my HLA antigens were fairly rare, and had personal 
doubts about both my brother matching (only 1 in 4 chance of this) and 
finding a good match in the general population of donors.  There were 13 
first-cut matches in the donor database, which is a reasonably small number.  
Thus, until about a month ago, I figured that I had something between 0% and 
30% chance of beating this leukemia.  My prospects are now greater than 80%.  
I personally feel that I will beat those odds, and that my real chances are 
100%.  Needless to say, my day-to-day demeanor and attitude has improved 
amazingly.  I am ready to beat the crap out of this disease.

In other news,

We met with Sonja Classen, the BMT coordinator for the BMT team, last Friday. 
 The actual transplant process is scheduled to begin on November 8, with the 
actual transplant on November 18.  No need to invite us over for Thanksgiving 
dinner this year.  Looks like I will be watching a lot of TV during a very 
disappointing Broncos' season.  

Also note the offer from Dr. Slavin to do the mini-transplant, my fall back 
position.  We will look into this only if Kaiser is not willing to pay for it 
here in Denver.  Amazingly, the expected expenses in Denver are somewhere 
between $300K and $400K.  Excuse the mildly ethnic joke, but I find it 
interesting that a Jew was able to get this for me wholesale.  My respects to 
Alvie Singer?? in Annie Hall for that reference.  

Scott Claver visited over the weekend.  We went on my usual hike in the Wild 
Basin area of Rocky Mtn. Natl. Park.  I think that the EPO is kicking in, 
because the hike was much, much easier than the previous two times I went up 
there.  

I am going to Chicago on Thursday to tell my mother.  Certainly a difficult 
thing to do.  However, with the recent string of positive news, it will be 
much easier to come through the experience feeling pretty good about the 
prospects.  Please keep things quiet for just another week.  

We are going to Maui on Sept. 6 to the Sept. 17, dependent on a positive 
blood test this week.

Norm Stern will be visiting from Georgia Sept. 28 and 29.  Ken Paradise will 
be coming in from California Oct. 8 to 10.

That's it for now.  There will not likely be any more major developments 
before we get back from Hawaii.

Thank you all for your support, and the lending of many ears.

Dave