[DCART] How's Bob doing?

[Wplewis2 at cs.com]

Hello all,

I'm passing along this email that Bob wrote on 11/28.  A large plus that Bob 
didn't mention, is that in other trials, Sutent (the medication that is now 
available to Bob) was more effective than any of the chemotherapeutics that have 
been available to him so far.

Will, KD7NIR
__________________________________________________
Bob writes:

Dear family and friends,


Well, it hasn't been too good this month. 

At the beginning of the month I was anemic, then I had a great deal of GI
bleeding and had to go into the hospital. My hematocrit was at 22 - real
low. I was gasping for breath and barely able to walk. I had lost a LOT of
blood. They gave me 4 units of red blood cells and 3 units of plasma. Bingo!
I could breathe and walk again. Ten days later my hematocrit was back down
to 26 and they gave me two more units of red blood cells. I've been given
Aranesp (EPO, to promote red blood cell production) but it doesn't seem to
be doing any good. There is no good reason that we know of for my system not
to be producing red blood cells, but it seems to be doing a poor job of it.
We don't know why I was bleeding but my INR (blood clotting factor) had
gotten near 6 - it should be between 2 and 3 (that is with the coumadin, 1
is normal). So that may have had something to do with it. I had also stopped
taking a drug called Protonix (like Nexium) and that may have had something
to do with it, too. We just aren't sure. They put me back on the Protonix
and said NOT to go off it again. I had dropped the Protonix (along with some
other drugs) because they were too expensive. Sigh. When the cancer ward
oncology team discharged me they warned me not to let things get so bad
before calling my doctor - they said that if I had waited another 24 hours I
might have just fallen down and died. Dang - a missed opportunity! :)

My last scans showed new tumors in my lungs, so I'm out of the Sorafenib
trial. The rule is that if your disease progresses you can't have the drug
anymore. I've been approved for the last experimental drug, Sutent, but the
nearest place to get it is in San Francisco. I'm trying to get my oncologist
at Stanford to get the drug for me by getting into the trial as an
administrator. We'll see how that works out. I can't complain - between the
IL-2 and the Sorafenib I had over 6 months with no new tumors. That is 6
months added to my life, I guess.

I'm getting short of breath again, which probably means I'm still losing red
blood cells. I have a visit to the oncologist this week and they'll do all
the usual lab tests so I guess we'll find out if my hematocrit is below
normal again. Sigh. 

I've been in a lot of pain and I sleep a lot. I have managed to get in three
motorcycle rides this month, each about 120-130 miles. These have been with
the local group of folks that I rode with in the spring. While these are
really enjoyable, I sleep nearly around the clock afterwards - the rides
really tire me out. I'm also trying to walk again, even if only for short
distances. We have a nearby Starbucks (or *$$ as my friends write it!) and I
walk there and back - just about a mile. 

Merrily and I celebrated our 40th anniversary on the 5th. We had some
friends in for dinner and lots of laughter. Living until our 40th was my
goal. I guess I'll have to either die now or set another goal ;)

I hope everyone had a lovely Thanksgiving, and I wish you all a very merry
Christmas.


Cheers,
Bob

------------------------------------------------------- 
Bob Evans Bob at BobAndMerrilyEvans.Org
2158 Harrison Street Home: 408-423-8704
Santa Clara, CA 95050 Cell: 775-450-4543