T3cN2a, refusing chemotherapy?

[Swede]

I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine. Radiation would have killed my sperm production completely, and also hurt other organs in my pelvis. Oxaliplatin would have irreversibly damaged my nervous system.

I am living essentially a normal life. I even have got several children, including twins, without any help whatsoever.

Do not hurt yourself irreversibly for the rest of your life with over-treatment. It is not worth it. (Yes, there is a small extra risk that you die if you refuse the over-treatment. But that risk is well worth taking to be able to live to the fullest for the rest of your hopefully long life.)

[martd]

I did 11 rounds with oxaliplatin,..I don't have irreversible nerve damage

[natelaugh]

I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine.

Hi,

My dad has right colon, T3N2AMx, cecum, what is the dosage of xeloda were you on? Why did you use xeloda instead of 5 FU?

Thanks,
Nate.

[Jack&KatiesMommy]

I did 3 years of Folfiri and 6 months of Oxiplaintin....I have no permanent damage. And I am still here today (8 years later.)

[natelaugh]

I did 3 years of Folfiri and 6 months of Oxiplaintin....I have no permanent damage. And I am still here today (8 years later.)

You are super awesome!!

[Swede]

I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine.

Hi,

My dad has right colon, T3N2AMx, cecum, what is the dosage of xeloda were you on? Why did you use xeloda instead of 5 FU?

Thanks,
Nate.

2.3 g twice daily. I am 176 cm 85 kg. Xeloda/capecitabine is far easier than 5FU (tablets at home vs iv at the hospital). Studies seem to indicate that xeloda is not inferior to 5FU. maybe even better. At least for liver metastases I think.

I am now 11 years out from my diagnosis, alive and well. I have fathered many children. Frankly I am a bit surprised that I am not dead. I crap my pants from time to time, but I can live with that.

[rp1954]

I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine... 2.3 g twice daily. I am 176 cm 85 kg. Xeloda/capecitabine is far easier than 5FU (tablets at home vs iv at the hospital). Studies seem to indicate that xeloda is not inferior to 5FU. maybe even better. At least for liver metastases I think.

I am now 11 years out from my diagnosis, alive and well. I have fathered many children. Frankly I am a bit surprised that I am not dead.

Congratulations, a big win on both the "ride" (Xeloda only) and the result.

Can we assume that "2.3 g twice daily"... "only took four rounds of xeloda/capecitabine" was two weeks out of three weeks per round of Xeldoa, or some other plan? That would be 90% of the European standard (initial) Xeloda dose and 112% of the US dosage per round/cycle.

[Swede]

I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine... 2.3 g twice daily. I am 176 cm 85 kg. Xeloda/capecitabine is far easier than 5FU (tablets at home vs iv at the hospital). Studies seem to indicate that xeloda is not inferior to 5FU. maybe even better. At least for liver metastases I think.

I am now 11 years out from my diagnosis, alive and well. I have fathered many children. Frankly I am a bit surprised that I am not dead.

Congratulations, a big win on both the "ride" (Xeloda only) and the result.

Can we assume that "2.3 g twice daily"... "only took four rounds of xeloda/capecitabine" was two weeks out of three weeks per round of Xeldoa, or some other plan? That would be 90% of the European standard (initial) Xeloda dose and 112% of the US dosage per round/cycle.

Yes, that is correct. That was the plan. Last round of xeloda I got horrible blisters on my feet. I could not walk, I had to crawl on the ground.

[rp1954]

Last round of xeloda I got horrible blisters on my feet. I could not walk, I had to crawl on the ground.

Thanks for getting back to us.
Sorry that your doctor(s) didn't have the knowledge/skill levels to prevent that last HFS part.

Overall, I think you likely still had better results, even with that late side effect.

If you could tell us a little more about the HFS onset timing (early, mid, late last cycle), progression and duration of the HFS, it would be useful.
Also what times did you take your capecitabine doses? x am/pm, and/or so many minutes after a meal?

I suspect that those HFS side effects could have been easily prevented by IV vitamin C and chronomodulation.

Here's a paper of contemporary Hong Kong patients' side effects CAP only vs CAPOX, and "folate levels". The paper does not differentiate natural folates and folic acid intake or metabolites.
It's unfortunate that medical articles continue to confuse natural folate vitamers, folinic acid (calcium folinate, Leucovorin), folic acid entities and their metabolites effects, because in 5FU related treatments, these differences are *crucial*. Although your dose suggests little folic acid exposure, I'd be interested if you think you had any folic acid supplemented in your food, or a ~daily multivitamin.