Roller Coaster Ride

July 18, 2004

Hang On! That's about all that I can say about this disease at this

point. I just had my every two month scans, and it took the doctor

fifteen minutes to explain why what he was telling me was good news,

and it involved what constitutes disease progression and

regression, " Joe, you know according to the WHO standard or what we

call the resistance standard, we don't consider a tumor to be

progressing unless it grows by over 30 percent...blah blah blah. " A

truly amazing visit where, looking back on it, I don't know anymore

now than I did before I went in - but that's ok - my oncologist is a

great guy who really cares, and sometimes that gets in the way of

being an effective communicator. Here's how it's gone so far:

2/04: Surgery. Liver metastasis. After all is said and done,

looks like about six tumors in the liver. Yuk

2/15: Anastomosis leak, infection. Yuk again.

~3/04: Begin chemo. FOLFOX. GI side effects. Got to love those

gloves. Sillyness is now defined as going to a little league game,

in May, with ski gloves on.

5/04: Fever, first scans. 50% reduction in liver tumors, but

recurrance in pelvis area where leak was. Yippie!, then Yuk (yet

again) as the news was, in order, two days apart. Change Chemo to

FOLFIRI with Avastin. Still dealing with some side effects (some

from before, some new), but eating ice cream again is definitely a

treat.

7/16/04: Second set of scans. 1 liver tumor grew, one shrunk,

cancer in pelvis the same. Inflamation in ascending colon. In two

weeks will go for PET scan and colonoscopy. Probably get off of 5

FU completely and go to Irinotecan with Erbitux.

I guess the story that I wanted to tell here, for the benefit of the

group, is that things go differently for everybody, and as I've

learned, there is no cookie cutter answer to treatment. I guess

also that one wishing to post with a question should be fairly

confident, given the number of members and randomness of results, of

finding somebody with an answer to their question.

Joe

July 18, 2004

Yo, Joe--

Since 6/1, I've been on the FOLFIRI plus Avastin and am getting first

CEA read in week or two. Took me 4 months before Oxaliplatin

(previous) stopped working, but my plain-spoken Dr. said: there's a

new tumor (liver) but the older ones (liver and upper body)have

shrunk. I didn't get the neuropathy until after I was off the

Oxaliplatin, but it's no big deal. Your Dr's invoking of the WHO

tumor criteria made me think of third world cancer sufferers. Can

you imagine getting any treatment at all in a village clinic? And

even if surgery done, then what? IV chemo? I should net around and

see what they can do. Will report back.

Katy

> Hang On! That's about all that I can say about this disease at

this

> point. I just had my every two month scans, and it took the doctor

> fifteen minutes to explain why what he was telling me was good

news,

> and it involved what constitutes disease progression and

> regression, " Joe, you know according to the WHO standard or what we

> call the resistance standard, we don't consider a tumor to be

> progressing unless it grows by over 30 percent...blah blah blah. "

A

> truly amazing visit where, looking back on it, I don't know anymore

> now than I did before I went in - but that's ok - my oncologist is

a

> great guy who really cares, and sometimes that gets in the way of

> being an effective communicator. Here's how it's gone so far:

>

> 2/04: Surgery. Liver metastasis. After all is said and done,

> looks like about six tumors in the liver. Yuk

> 2/15: Anastomosis leak, infection. Yuk again.

> ~3/04: Begin chemo. FOLFOX. GI side effects. Got to love those

> gloves. Sillyness is now defined as going to a little league game,

> in May, with ski gloves on.

> 5/04: Fever, first scans. 50% reduction in liver tumors, but

> recurrance in pelvis area where leak was. Yippie!, then Yuk (yet

> again) as the news was, in order, two days apart. Change Chemo to

> FOLFIRI with Avastin. Still dealing with some side effects (some

> from before, some new), but eating ice cream again is definitely a

> treat.

> 7/16/04: Second set of scans. 1 liver tumor grew, one shrunk,

> cancer in pelvis the same. Inflamation in ascending colon. In two

> weeks will go for PET scan and colonoscopy. Probably get off of 5

> FU completely and go to Irinotecan with Erbitux.

>

> I guess the story that I wanted to tell here, for the benefit of

the

> group, is that things go differently for everybody, and as I've

> learned, there is no cookie cutter answer to treatment. I guess

> also that one wishing to post with a question should be fairly

> confident, given the number of members and randomness of results,

of

> finding somebody with an answer to their question.

>

> Joe

July 18, 2004