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My dad was diagnosed with colon cancer, which had metastisized to his
liver, two years ago this month. He had all of the cancer removed from
his colon and has tried several things for the tumors in his liver,
including therasphere. He's managed to decrease the size of them a
little, by taking Xeloda, immune system supplements, and going on a
strict no-sugar, no-animal fat diet. His CEA dropped way down to 4 at
its lowest, but in the last month, it has gone up from around 8 to 18.
He's going in to try ablation in the next couple of weeks. All in all
we're amazed at how well he's done, as the prognosis wasn't very good
at the start. Now we're thinking he needs to find a new kind of
chemotherapy to try, since the Xeloda may eventually stop working.
We're looking for a low dose oral chemotherapy that's not Xeloda. Is
anyone aware of such a drug that is available outside clinical trials?
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-I don't know of any oral drug outside of Xeloda that's available for
colon cancer, though Lowkey is probably better informed. Probably the best person to ask is your dad's oncologist. He/she would
be the best informed on the topic. -I don't know of ANY oral form of chemo outside of xeloda - at least
not for colon cancer. Michele and I have 'done' just about everything
for colon/rectal cancer and the current protocols seem to be 5FU + LV
5FU + LV + CPT-11
5FU + LV + Oxaliplatin
Xeloda
Xeloda + LV
Trials If one gets to the point where NEITHER the Xeloda NOR the Oxali are
working, I don't think that there's much more (pharmacologically) that
the oncologist has available in his bag of tricks - at least for colon
cancer with liver mets. That's seems to be where I am right now - the Xeloda is keeping my
cancer from spreading too fast, but the markers (CEA) show that Xeloda
isn't shrinking the tumors or preventing the stuff from infecting more
lymph nodes etc. I've tried everything else... including two trials and ritual
sacrifices to Flippy the Chipmunk God.( At least these were mildly
entertaining. I kinda like dunkin' Malibu Barbie dolls in tepid bowls
of borscht, but then I've always had a kinky streak) Thus, like many others, I'm waiting for C225 (or Erbitux, or whatever
they wanna call it this week) to be released. The word there ain't too good either, at least for advanced cases like
mine and perhaps, Michele's. My little white labrat spies report the
following: rumor has it that 'THEY' are only accepting about 5 new
patients for C225 a month, nationwide and a total of about 50 new
patients per month, worldwide. So, it's unlikely either of us will get
the 'good stuff' much before it's released by the FDA. The rumored
release date is SUPPOSED to be sometime late next year.... provided
Martha knuckles under and behaves herself, and THEY don't find any
more stock 'irregularities' etc. If anyone in this website knows of any other medication for Colon Cancer,
it'd be Steph. Just to enlighten you, Steph is our resident (and much
beloved) radiation oncologist whereas Bookbabe and I are two cancer
warriors who've decided (at least for the moment) to fight this filthy
illness just as long and as hard as we can. Michele is right. The very best person to talk to is your dad's
doctor, although I must say, I am very impressed at how well your dad
has done so far in his OWN personal battle. My worry is this; Somehow, through some magic, you and your dad have
made remarkable strides in this battle (And believe me, there are
loads and loads of people out here in cyber land who are screaming,
clapping, skipping and dancing on hearing this kind of news) The fact
is however, that the cancer is most likely going to come back, and
when it does, the odds are that the very best you'll be able to do
THIS time around is to slow the filthy beast down. Oncologist face this fact - and get beaten up for this fact - all the
time. The scenario runs something like this: A patient has a tremendous response with, say, CPT-11 or Oxaliplatin.
The tumors shrink and shrink and the markers go down and down.
Eventually, the onc and the patient collectively decide to stop chemo
sessions altogether and just monitor the situation closely. For month
after month, things look wonderful and then WHAMMO, the cancer just
seems to reappear out of nowhere. From the patients point of view, the plan of action seems obvious,
yes? Start another round with CPT-11 or Oxali as soon as possible. It
worked before so it should be the first line of defence now, right? Well, maybe. It is also very likely that the cancer has developed an
immunity to this form of chemo, and using it now would be almost as
effective as using distilled water. So the oncologist holds off,
studying the options and making tests. In the interim, the tumors grow
like bionic mildew in monsoon season. The patient gets madder and madder at the onc for not using the 'magic
bullet' and eventually 'has it out' with the onc. The doc tries to
explain the biochemistry behind the symptoms, but the patient is now
near a panic stage. So, the 'magic bullet' is tried again and,
surprise, surprise..... it doesn't work. Not at all. Just as the
doctor predicted. How does this scenario apply to you? You and your dad have done a number of 'unconventional' things - like
changes in diet, life style and so on. You have also gone through a a
lot of 'conventional' treatment. You are true cancer warriors in every
sense of the word. But, if the cancer comes back, I'd hate like hell
to see you beating yourselves up because the 'magic bullet' didn't
work. I'd hate to have you go around thinking you did something
'wrong' and because of this, the cancer came back and killed your dad. Keep this in mind 'IF' and I truly hope the proper word is 'IF' the
cancer gets aggressive again. You didn't screw up by changing your lifestyle.
If you waited a while before resuming the no-sugar diet, this wait did
NOT have any impact on the cancer
If you waited a while before resuming chemo, this wait had no impact
on the spread of the cancer.
If you decided NOT to do the ablation, and the cancer came back, it
probably would have come back anyway.
If you decided to do the ablation and the cancer came back, your
'weakened condition' had very little to do with it. In the end, what I'm trying to say is this: Direct your mental powers
toward the cancer and not beating yourself up. Keep in mind that when
you decided to be an active partner in the battle, you also become an
obvious target when it comes time to assign blame. Big target-
Very, very easy to hit. You have been VERY - indeed remarkably - successful so far. Bask in
the glow of victory and the heady soldier's exhaustion of a battle
well-fought. Just don't fall into the trap of self flagellation if the
next battle (or the one after that, or the one after that.......)
doesn't go as well as this one did.
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