New Here & ANY info appreciated

[WorriedWife]

I wish you tons of luck on your decision. My Hubby had that same decision to make exactly a year ago. After sleepless nights and tons of research he choose not to do chemo for many different reasons. Whatever you decide, don't second guess it and don't be sorry you choose the other. He is extremely happy with his decision no matter what. He always said (at least a hundred times) that if the cancer is coming back, it's coming back...with or without chemo, and we have read hundreds and hundreds stories/articles/posts, etc. on this exact scenario. But again...that's just us...(and in no way am I trying to sway you one way or another) I just know how terribly difficult this decision is and I wish you the very, very best with whatever you decide. Prayers for you in trying to get through this tough time and also for a long and happy life!!!

[godisgood]

My mistake as I didn't see the word 'combo' in the sentence. I erroneously thought that the figures were solely comparing oral (xeloda) with 5FU/leucovorin. The studies I have seen only show a max reduction of 2% with the addition of oxi. What the studies don't take into account are the long term side effects of oxi. For me, the risk of that isn't worth the addition 2-3% increase in an already high survival benefit anyway.

@weisssoccermom it was my fault i never mentioned the combo in the original post. so what is the difference between xeloda and capectabine? Essentially my oncologist said that same thing regarding the risk vs. the benefit....

[godisgood]

this onco test has thrown a monkey wrench into the equation...so this test seems both a blessing and curse............was the test available when you were originally diagnosed?????

Which test are you referring to? Do you have a reference for it?

Is it this one? -- Survival Estimate MSK

The onco dx colon assay test(www.oncotypedx.com)....it is a test that looks at the pathology of the tumor and scores it between 1-100.....essentialy if deemed mm deficient chance of recurrence could be 7% and below....mm proficient(as i am ) and your risk is between 10-30%....there however based on the QUASAR a sidenote on the report that sais risk could actually be between 2-6% lower... The test is relatively new and until now there was only a breast cancer onco test that has proven to be quite accurate in its prediction however, with colon cancer it is still relatively new. In fact I was the first person that my oncologist performed the test on.

[O Stoma Mia]

... so what is the difference between xeloda and capectabine?...

Hi godisgood - Xeloda is the brand name and capectabine is the generic name of the product. I believe that Xeloda is still under patent protection, so there is only one company that makes it. It is the pill form of 5FU, but the ingredients have to be digested and metabolized in the patient's digestive system before they actually become 5FU. One of the potential problems with the Xeloda format is that the patient might forget to take the pills. This can easily happen if, say, the patient is very, very fatigued, falls asleep in the late afternoon and then does not wake up until the next morning, thereby missing his evening pill-taking session.

[O Stoma Mia]

...The onco dx colon assay test (http://www.oncotypedx.com)....it is a test that looks at the pathology of the tumor and scores it between 1-100....

Hi godisgood - Thanks for the information.

[godisgood]

Welcome to the club no one wants to qualify for but you'll be glad you found us! Since I can't give you advice on whether to get chemo or not (I was stage 4 right off the bat), I did notice the part of your where you talk about struggling even though you're "just" stage 2. Of course you're struggling! You've been given the word no one ever wants hear - cancer. Along with that diagnosis comes a whole new vernacular and all kinds of decisions you probably never dreamed you'd have to face. Yes, there are folks here in worse shape but, if you think about it, you're in worse shape than those are stage 0 or 1. In other words, you're as justified in your struggling as, say, I am. I hope everyone here that's answering your post are able to help you see more clearly what might be best for you.
God bless ~
Guinevere
(Mighty queen fighting the beast!)

@ mightyqueen trust me when i say to the depths of my soul I know the struggle I am in. I have an 11 year old daughter and everyday am reminded of whatcould be. This forum and group as you say have been helping me to see things more clearly , as are you Mighty Queen....... GOD Bless!!!!!

[godisgood]

I wish you tons of luck on your decision. My Hubby had that same decision to make exactly a year ago. After sleepless nights and tons of research he choose not to do chemo for many different reasons. Whatever you decide, don't second guess it and don't be sorry you choose the other. He is extremely happy with his decision no matter what. He always said (at least a hundred times) that if the cancer is coming back, it's coming back...with or without chemo, and we have read hundreds and hundreds stories/articles/posts, etc. on this exact scenario. But again...that's just us...(and in no way am I trying to sway you one way or another) I just know how terribly difficult this decision is and I wish you the very, very best with whatever you decide. Prayers for you in trying to get through this tough time and also for a long and happy life!!!

thank you @ worried wife....that is what my oncologist said " just make the decision and stick with it".......Your husband and I seem to have the same thought process(he must be a handful).....Thank you for the prayers as I can never have enough. GOD BLESS You & Your husband and Prayers for long and happy lives for us ALL!!!!!!!!!!

[weisssoccermom]

Yes, as you've already been informed, Xeloda is the oral form that you mentioned and the capcetabine is the generic name for Xeloda.
To say that Xeloda is simply an 'oral' form is much of a misnomer. Xeloda is converted into 5FU via a very complicated process in the liver and eventually turns into 5FU when the metabolized form meets up with the TP enzyme which is generally found in high concentrations in tumor tissue.

I am a huge proponent for Xeloda if you are one that wants it. I have never heard of people who would fall asleep and miss their pills. On the contrary, patients who opt for Xeloda are usually very meticulous about taking their pills. Most that I know of set a timer, etc and don't forget their pills. Certainly they may deviate by an hour or so from day to day (which is no big deal) but they generally don't miss them. However, an elderly patient or someone who has a difficult time swallowing pills wouldn't be a good candidate for Xeloda. IMO, so much control is taken out of our lives when dxd with cancer that taking the Xeloda is one way to regain some control over your life. You should also note that if you opt for infused 5FU/leucovorin (with or without the oxi), your will need to have a port placed in your chest in order to have the drugs delivered. Assuming you would have an infusion every other week, you would need a port as you would be coming home with a pump. No need for the port with the Xeloda. I also strongly feel that no port, no pump has a huge emotional/psychological impact. For me, being on the pills was much more 'normal' than having to be connected to the pump (I'll admit - I hated that thing and was so glad to get my port out). If you opt to leave out the oxi, just know that either option (5FU/leucovorin or Xeloda) offers essentially the same benefit with Xeloda showing a slightly better (statistically insignificant) one.

Let me clarify one other aspect that I keep mentioning. Infused 5FU is given with leucovorin - technically not a chemotherapy drug but given together nevertheless. Leucovorin is a derivative of folic acid and when given in conjunction with 5FU, it allows the 5FU to remain in the patient's system longer. Without it, the 5FU basically passes quickly through the patient's body. When a patient takes Xeloda, because of the constant dosing (morning and evening doses), there is no need for the leucovorin. In fact, if a patient did take leucovorin with Xeloda, a toxic buildup of 5FU in the patient's system would occur leading to some unpleasant gastric side effects. In fact, the leucovorin exacerbates the side effects of the 5FU - in essence making them worse. You should also be aware that if you decide on any chemotherapy (5FU/leucovorin, FOLFOX or XELOX or Xeloda) you will probably be advised to stop taking a multi vitamin (they contain folic acid - in the 6+ years I've been on this forum, we've only found one - a Flinstone vitamin that didn't contain much - that didn't contain at least the minimum amount of recommended folic acid with most multis containing much more) and be instructed NOT to supplement with folic acid. You should also be aware that in this country, our grain is fortified with folic acid so you should just be aware when taking any form of 5FU you need to read labels and avoid EXCESSIVE amounts of these foods. Not that I capitalized excessive. It doesn't mean you can't eat a sandwich, have a bowl of cereal, etc. However, you should be aware, particularly with Xeloda to read labels and choose your foods accordingly. Cereals, for example, have a tendency to be super fortified.

You may already know this but thought I would throw it out here because you're getting information thrown at you from all sides.
These would be the most common protocols that you might be offered as a stage II

FOLFOX = 5FU/leucovorin + oxaliplatin
XELOX = Xeloda + oxaliplatin
5FU/leucovorin
Xeloda
Note that you don't take both 5FU/leucovorin and Xeloda at the same time.