Wednesday, January 14, 2009

Okay, spoke with BB...

I like this guy -- he called me after his dinner ended at 11PM his time.  It seems his assistant / clinician MAY have overstated things.

My chromosome 1 abnormality is not a good sign.  But it's not definitive.  Their proprietary gene array analysis will need to be done to determine what is going on.

But he did say that he thought my regularly scheduled appointment on the 25th would be soon enough.  In other words, I have next week to spend with family and friends.

So I am back, albeit somewhat shaken by the process, to believing that I will be in the low-risk group.  I have too many otherwise positive markers.  So until they prove to me that my gene array analysis definitively puts me in the high risk category, I'll go on believing I am low risk.

If I *am* deemed high risk, and his protocol can't help me, then I will go with KA's suggested regimen (which is consistent with what City of Hope and Dr. SH would do) which would be Velcade, Revlimid and Dex during induction, followed by a single autologous transplant, followed by maintenance on Revlimid.  Followed by finger crossing to make sure more drugs come out.

What a day...ugh.

Now drinking:

Had a 2002 Quilceda Creek (100 points in Parker).  Delicious.  Moving on to a 2000 Chateau Pavie (100 points in Parker as well).  It's a two bottle evening.  The liver can wait!

The worst thing about this, by the way... that now people need to scroll down to see that sweet photo of Jack Elam.  :)

Bad news...

Probably very bad news, actually.

I received word from BB's office that based on my chromosome 1 abnormality, which most people do not associate with high risk, that I *am* high risk.  They use a more robust analysis of genes and chromosomes than elsewhere.  The historical markers of risk -- chromosome 13 deletion and 4;14 translocation, neither of which I have -- haven't been used in more than 2 years in BB's offices because they were proved in multivariate analysis to not be useful factors.  In other words, because they have enough data at BB's shop (since he sees more people than anybody in the world) they can run more complicated statistical analyses of what types of this cancer are worse than others.

They believe I am high risk.

What does this mean?  Well, a couple of things.

1.  I will not benefit from their treatment.  In contrast to low-risk MM, where people who go through BB's protocol have a 50-60% chance of being cured and 85% are still alive 4 years after diagnosis, with HIGH-risk MM, only 25% are still alive after 4 years...and there is no "plateau" that suggests a cure.  So 25% are alive after 4 years, 20% after 5, etc. with nobody beating it.   In BB's own words in his presentation "The Myth of Incurability" (which evidently only applies to low-risk cases), he writes "The outcome is still dismal for high-risk MM."

2.  I can't even wait two weeks to be seen.  I think I will have to go next week.

The one thing I am wondering is all they are going off is my chromosome writeup from City of Hope, which noted that I have a chromosome 1 abnormality which is present in about 15% of people.  If that was the ONLY thing that separated low- from high-risk, then they wouldn't need to look at the rest of the genes.

I'm hoping that's the case.  But for the first time since my initial diagnosis, I'm scared to death.

BB's clinician is at dinner now but should be calling soon.  I may post another update tonight.

Today had been a good day -- I was upbeat, I was joking with my brothers this morning, and I received a very nice note from a person whose husband is battling a brain tumor, who said this blog was uplifting.  I'm glad it can be...I hope it remains that way consistently.

Right now, there are no guarantees.