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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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