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\ - / INDUSTRY GADFLY: "Multiple Myeloma, in My Own Words"
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by John Sanguinetti -- as told to John Cooley
Holliston Poor Farm, P.O. Box 6222, Holliston, MA 01746-6222
Editor's Note: This being a special situation, John Sanguinetti, one
of the fathers of VCS, is writing this Gadfly column. - John Cooley
Hi, John,
Thanks for emailing. The name of my cancer is "multiple myeloma". It is
the second most common blood cancer after leukemia. However, it is
relatively uncommon; about 14,000 people are diagnosed each year in the
US, and about 50,000 have the disease in the US. It is a cancer of plasma
cells in the bone marrow. Those are cells that produce white blood cells.
The cancerous cells produce monoclonal protein (that is, the protein is all
the same type). The protein can be measured in the blood, which is how I
was diagnosed with the disease. Eventually, this excess protein gets so
high that it damages my internal organs (kidney, liver). It also crowds
out normal white blood cells, resulting in loss of an effective immune
system. The cancer cells themselves attach to the lining of my bone and
cause decalcification. This is the origin of the name of the disease, as
the bones of people who died of multiple myeloma had lots of small holes
in them.
The statistics are grim. Most people are not diagnosed until the disease
is fairly advanced, and it has caused a bone to break -- usually in the
spine. From diagnosis, the median survival (as of 2 years ago, when I was
diagnosed) is about 33 months. Things are improving, and now the median
is probably closer to 4 years.
Since I was diagnosed relatively early in the course of the disease, I
began taking a drug called Zometa once a month (about $1000 per dose).
This drug fights the bone destruction which occurs from both my cancer and
a few others. It doesn't have much effect on the cancer cells themselves.
From October, 2001 until June 2003, my family watched the protein level in
my blood steadily rise to the point where treatment was required. At that
point, a bone marrow biopsy revealed that >70% of the cells in my bone
marrow were cancerous plasma cells.
Last June, I began treatment leading to a bone marrow transplant. I took
a combination of Thalidomide (yes, the same drug responsible for birth
defects in the early 60's) and Dexamethasone (a steroid) in pretty high
doses. Thalidomide costs about $1400/month. Dex is relatively cheaper,
I think. This lasted for 4 months, at which point the number of cancer
cells in me had been reduced significantly. Then, there was one round of
standard chemotherapy, stem cell collection, and the transplant itself.
Transplant is a bit of a misnomer, since you actually receive your own stem
cells, not someone else's bone marrow. The procedure is to collect stem
cells from my blood and freeze them. Then, you get a very high dose of
Melphalan, a standard chemotherapy drug. This kills most of the cells in
your bone marrow, and particularly all the cells that produce white blood
cells. Then, your frozen stem cells are re-injected into your blood, and
they magically find their way to the bone marrow and repopulate it.
For about two days, I had no white blood cells whatsoever, and then my
stem cells began producing white blood cells. After about 2 weeks, I had
about 50% of a functioning immune system. Fortunately, I did not get any
infections, which is a common problem in this procedure, as you can
imagine. By now, 5 months post-transplant, I am just about back to normal
as far as blood chemistry, though it will be another 6 or 7 months to get
completely back to normal.
The problem with all this is that bone marrow transplants are not cures.
There are still some residual cancerous plasma cells in your bone marrow
(about 3%), and it always recurs. The median time to recurrence is 33
months (the same number). When it recurs, the cancer cells are usually
resistant to not only Melphalan, but all other chemo drugs, meaning another
transplant won't be very effective.
So, given the current state of the art, I have between 2 to 4 years before
I will have a serious problem.
Therein lies my hope. Research attempting to find drugs that are effective
against myeloma has been going on for a long time, in a relatively
small-time manner. However, in the past 6 years, activity has picked up,
and some discoveries have been made. For instance, using Thalidomide,
which is a really nasty drug, to treat myeloma was only figured out in
1998, and didn't become standard until 2002.
Because this is a uniformly fatal disease, people who have it are quite
willing to participate in clinical trials of almost anything that might
help, and the FDA has been remarkably cooperative. As a result, Velcade
was approved by the FDA last May after only 5 years of development (that
is, lab experimentation and clinical trials). Velcade is effective at
prolonging life for a median of 11 months.
My problem is that insurance companies won't pay for research.
The organization I'm involved with is the Myeloma Research Fund at the
Peninsula Community Foundation. This is a "donor-advised" fund. That
means that the donors give the money to the Peninsula Community Foundation,
and they distribute it to non-profit organizations according to the
direction of the donors. In this case, there is a board of directors
consisting of Lew Aronson, the founder of the MRF, myself, and 3 other
people who decide which organizations will get the money.
The reason for this organization is efficiency. The Peninsula Community
Foundation is a 501(c)3 organization, meaning it is tax-exempt, and
donations are tax deductible. The board of the MRF is all volunteer and
unpaid. Indeed, with this structure, they can't be paid. The PCF
charges a 1% management fee on balances kept with it, so the MRF tries
to collect money near the time it distributes it (July). As a result,
more than 99% of money donated goes directly to the research organizations.
Even better, the MRF stipulates that the money given cannot be used for
institutional overhead. We want to be paying for research, not buildings.
Surprisingly, the organizations we fund agree to this. Consequently, this
is about the most efficient way to give to cancer research that there is.
The founder of MRF, Lew Aronson is the Chief Scientist of Finisar, an
optical component company here in the Valley. He was diagnosed with
multiple myeloma in 2000. He founded MRF shortly after he was told that
money in the "low millions" would have a significant impact on myeloma
research. Finisar had gone public 6 months before, and there were a lot
of winners at his company that he solicited for funding the MRF. Now,
of course, Finisar stock is about 5% of what it was at its peak.
Nevertheless, his original donors came through with $2 m over 3 years.
I met Lew shortly after I was diagnosed. The MRF was 1 year old then,
and I met the funded researchers at the first annual review. I was
convinced that this was the most effective vehicle for finding a
cure for multiple myeloma that I was going to find. In fact, I believe
that the benefits of the research being funded are going to spill over
to the treatment of other cancers, though of course that's not my
primary concern.
I have given $180k so far, which does not include the amount I will give
this July (probably around $90-100k). The Synopsys stock which I still
have from Chronologic has been put to good use. I solicited a number of
my friends from the Valley, and a number of them have donated about the
same amount. I think that 7 people have given $179k over 2 years, and
another $100k has been pledged for this July.
I don't pay much out of pocket for meds. My insurance company pays nearly
all of it. Right now, that's just the $1k/month (it's an IV infusion, once
a month). Last summer, it was $2500/month. I can't claim that the high
price of medicine is a problem for me. Even if my insurance didn't cover
it, I would gladly pay for it. The goal of this research is to come up
with more high-priced drugs. Because multiple myeloma is an orphan
disease, all drugs are going to be high-priced.
The story isn't so good for those in worse financial condition. I met a
doctor recently whose practice is in Brooklyn. She said that bone marrow
transplant was not an option for most of her patients because they simply
couldn't afford it. A typical bone marrow transplant costs $300K to $350K.
Many insurance plans, including Forte's, cap payment for organ transplants
at $250k. Again, I was fortunate, because I didn't have any complications,
which kept the cost down. I think the total bill came to less than $100k.
All the money in the world means nothing if you're looking at multiple
myeloma like I am.
This has gotten overly long, so I'll stop and let you ask questions if
you have any. Thanks for taking an interest in this, John. I do
appreciate it.
- John Sanguinetti
Forte Design Systems San Jose, CA
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Editor's Note: We'll be having a fundraiser for the Myeloma Research Fund
at 5:30 PM this Wednesday, September 15th at Capital Club Athletics in
San Jose. It's going to be a fun event designed to liberate your dollars
from you for John's fund. The CEOs of the EDA Big Four (Mike Fister,
Aart, Wally, and Rajeev) will all be there and we'll be auctioning off a
dinner date with each of them. EE Times Mike Santarini and Dataquest
Gary Smith are also offering a team dinner for auction that they'll make
at your house. There'll be a whole host of other stuff auctioned like
a block of San Francisco Giants tickets, cases of wine, etc. It costs
$200 to get in and bring your checkbook. Our goal is to have a whole lot
of fun separating you from your money like a Cadence salesman armed with a
customer-signed blank Purchase Order! (It's all tax deductable anyway.)
To join us, please RSVP at EDAcharity04@yahoo.com
And for those who can't attend, you can send in an instant (and tax
deductable) donation at
http://myelomasource.org/get_involved.htm
Please include "EDA Charity" in the message box so we can track our total
dollar amount. Why? Because Rajeev Madhavan, the CEO of Magma, has said
he will personally be matching (up to $50,000) every dollar raised at the
event! Cool! See you there and thanks for helping. - John Cooley
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John Cooley runs the E-mail Synopsys Users Group (ESNUG), is a
contract ASIC designer, and loves hearing from engineers at
or (508) 429-4357.
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