Newly diagnosed with stage III colon cancer starting on xeloda/oxaliplatin

pascall5

Hi everyone,

Diagnosed end of June, surgery 08/01/11 and I'm starting Xeloda with Oxaliplatin 08/26/11. I went from being a 64 year old, never a sick day in my life, no surgeries....to having cancer. I'm overwhelmed. Have a very good pcp, gastroenterologist and my surgeon was great! All very optomistic. However, had my first oncology appointment a couple of days ago and, although this young woman was pleasant, gave myself and my daughter all the time we needed, answered every question..she was pretty matter of fact and it said, "You have stage 3 cancer and this is what we give.....and proceed to start talking port placement, blah, blah. Had I not gotten my own information regarding options of treatment...Xeloda would not have come up. This is what I chose for my treatment. The outcomes are the same as the standard, although the side effects are more intense in some patients. She didn't try to talk me out of it, but you could tell, I might be messing up her protocols. Anyway, anyone else on Xeloda and Oxaliplatin? Would appreciate any good, bad and ugly truths you can give me. I had 1 positive lymph node out of 15, no other spread. Wishing all of you survivors out there all the best. Look forward to hearing from you. mp.

lauragb

Xeloda
Hi,
My situation is different from yours because I am on just Xeloda with radiation as therapy before my surgery since my cancer is in the rectum and not colon. Like you, I was healthy, 53 years old, not on any meds, etc so my diagnosis has been overwhelming also.(not that it isn't even if one does have other health issues!)
I started out on IV 5FU through a port but I have had multiple issues with the port so I was switched to Xeloda. I have tolerated the Xeloda as well as if not better than the IV 5FU but am starting to get itching hands which is a more likely side effect with the Xeloda. I'm not sure what the differences will be when it's combined with the Oxaliplatin but do gather from what I've read that there are more side effects with the Oxaliplatin than with the Xeloda. Still, everyone is different so you may not have all the issues.
Wishing you all the best too.
Laura

westie66

lauragb said:

Xeloda
Hi,
My situation is different from yours because I am on just Xeloda with radiation as therapy before my surgery since my cancer is in the rectum and not colon. Like you, I was healthy, 53 years old, not on any meds, etc so my diagnosis has been overwhelming also.(not that it isn't even if one does have other health issues!)
I started out on IV 5FU through a port but I have had multiple issues with the port so I was switched to Xeloda. I have tolerated the Xeloda as well as if not better than the IV 5FU but am starting to get itching hands which is a more likely side effect with the Xeloda. I'm not sure what the differences will be when it's combined with the Oxaliplatin but do gather from what I've read that there are more side effects with the Oxaliplatin than with the Xeloda. Still, everyone is different so you may not have all the issues.
Wishing you all the best too.
Laura

Oxaliplatin
Hi: I am currently being treated with oxaliplatin (with irenotecan, 5FU pump, and leucovin but not Xeloda). I can say that there are some rather nasty side effects from the oxaliplatin but also from the irenotecan and 5FU. Everyone reacts differently but right from the start I developed severe neuropathy from the oxaliplatin so my oncologist reduced the dosage and infusion rate. Helped a lot. I also take daily L-Glutamine 5 grams in juice, VitB6, calcium/magnesium, and alpha-lipoic acid. I haven't had a problem with neuropathy since. The supplements are often what are prescribed for nerve problems in people who have fibromyelgia and diabetes.
Cheryl

pascall5

lauragb said:

Xeloda
Hi,
My situation is different from yours because I am on just Xeloda with radiation as therapy before my surgery since my cancer is in the rectum and not colon. Like you, I was healthy, 53 years old, not on any meds, etc so my diagnosis has been overwhelming also.(not that it isn't even if one does have other health issues!)
I started out on IV 5FU through a port but I have had multiple issues with the port so I was switched to Xeloda. I have tolerated the Xeloda as well as if not better than the IV 5FU but am starting to get itching hands which is a more likely side effect with the Xeloda. I'm not sure what the differences will be when it's combined with the Oxaliplatin but do gather from what I've read that there are more side effects with the Oxaliplatin than with the Xeloda. Still, everyone is different so you may not have all the issues.
Wishing you all the best too.
Laura

Xeloda
Thanks Laura. Yep, the itchy, peeling hands and feet are courtesy of the Xeloda from what I've read. I have been advised to keep my hands and feet thoroughly moisturized to help with that. The Oxaliplatin has a charm of it's own. The neuropathy is supposed to be pretty bad in some people. There is a kind of cold intolerance that comes with it. From what I read, I'm going to need lots of lotion, gloves and socks for the cold intolerance and Sea bands (best known for motion and morning sickness) to help a bit with the nausea. It's going to be an interesting six months. We'll see. Best of luck during your treatment. Hope I see you again on the discussion board.

Mary

pascall5

westie66 said:

Oxaliplatin
Hi: I am currently being treated with oxaliplatin (with irenotecan, 5FU pump, and leucovin but not Xeloda). I can say that there are some rather nasty side effects from the oxaliplatin but also from the irenotecan and 5FU. Everyone reacts differently but right from the start I developed severe neuropathy from the oxaliplatin so my oncologist reduced the dosage and infusion rate. Helped a lot. I also take daily L-Glutamine 5 grams in juice, VitB6, calcium/magnesium, and alpha-lipoic acid. I haven't had a problem with neuropathy since. The supplements are often what are prescribed for nerve problems in people who have fibromyelgia and diabetes.
Cheryl

Oxaliplatin
I've written that information down to take to my oncologist next Friday when I start my treatment. I really appreciate this support discussion group. Knowing I'm not the Lone Ranger will help me be brave. (I hope) Thanks Cheryl.

Mary

keystone

Xeloda
My husband was on this and did have severe nausea after a couple of weeks. I researched and found that Folic acid can increase the side effects. This was a little tough due to the US fortifies all grain products. We pulled a lot of bread/pasta from his diet and he started doing so much better. Hope this might help you!

Sonia32

Hi
Welcome to a club no one wants to be a member of, glad you found our family though.
4.15am in the UK, so apologise if I don't seem to make sense.
You'll find a mix bag in our family from fighters to survivors, I was 32 when I got hit with stage 3 colon cancer, 10/11 lymph nodes infected same treatment. Onc was nice, but he was saying it's a case of waiting for it to come back again, I argued with him no guarantees in life and even some stage 1 folk have moved to stage 4 etc, so will see.
Had my last treatment Dec 09, so far god willing touch wood, still in remission.

Just keep asking questions, fighting even when you feel you don't want too. And please keep posting here.

Hugs

pascall5

Sonia32 said:

Hi
Welcome to a club no one wants to be a member of, glad you found our family though.
4.15am in the UK, so apologise if I don't seem to make sense.
You'll find a mix bag in our family from fighters to survivors, I was 32 when I got hit with stage 3 colon cancer, 10/11 lymph nodes infected same treatment. Onc was nice, but he was saying it's a case of waiting for it to come back again, I argued with him no guarantees in life and even some stage 1 folk have moved to stage 4 etc, so will see.
Had my last treatment Dec 09, so far god willing touch wood, still in remission.

Just keep asking questions, fighting even when you feel you don't want too. And please keep posting here.

Hugs

Hi
Thanks Sonia. Good to hear from you. I lived in Portsmouth, England for 15 years. My second home. Go back and forth a lot and my partner of 23 years is born and bred in Portsmouth, still lives there part time when he's not here and is still running a business there, which unfortunately, will be taking him away during this six month treatment. I have a wonderful daughter here and one in California who intends to come to Nashville when she can to help. I'm blessed.

A little scared, of course, starting my first infusion of Oxaliplatin with Xeloda on Friday for stage 3A (1/15 lymph nodes). Have gleaned a ton of info from this discussion group and it will allow me to make a list of medication questions and over the counter meds to stock up on for some of the side effects. Whether they will all work or not...that is the question. In any case, it will be what it is. So many folks going through this, it seems epidemic! Take care and hope to see you again here. Hugs back at ya.

Mary