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NED Status but taking Xeloda?

Posts: 59
Joined: Oct 2011

I was wondering if anyone is taking Xeloda as maintenance when you are NED status. I was diagnosed stage 4; lung nodule removed February 2011, completed response to the rectal tumor with chemo/radiation, LAR with temp ileostomy in September 2011 to remove scar tissue (all pathology clean), and followed by 6 months of Folfiri (mop-up), temp ileostomy reversed July 2012. All PET scans since chemo/radiation have shown NED.

My oncologist now recommends going on a low dose Xeloda for 6 months and if everything still looks good after that-- just monitoring every 4 months with a CAT scan. I am debating the maintenance Xeloda. On one hand, everything he recommended worked......so I think I should listen to him. On the other hand, I am wondering what the potential damage of adding more cancer drugs into my system. Any thoughts appreciated!

Posts: 1428
Joined: Feb 2011

There has been posts on here about a doctor in Chicago doing clinical trials with celebrex and xeloda. Sounds really interesting. I was off chemo. for 10 months, I'm now on Xeloda because last scan showed progression....I'm wishing I had gone on xeloda months ago, perhaps it would have kept my scans from showing progression, who knows. Tough decision.

Brenda Bricco
Posts: 579
Joined: Aug 2011

My husband was NED after resection and is on Xeloda, Doc said six months.
Could someone send me a link on the Xeloda/Celbrex trial? I would like to read it. ;)

Posts: 1939
Joined: Oct 2009


which is where i first heard of this (early July) so by now more info is probably available

Posts: 172
Joined: Jul 2012

only because my Nat Onc suggested I go on low dose celebrex for my arthritis last year. I was hesitant because I just am whenever a Dr. suggests drugs and I knew there was a class action suite against celebrex in Canada. The suite is for dosages of 400mg/day and above that resulted in liver damage. So, because my liver is pretty darned important to me at the moment, I wasn't all that keen. However, he told me that at a low dose it would not do any damage and actually might work well with my Xeloda in fighting the cancer. At the time I sort of took this with a grain of salt, but I've grown to realize that my Nat Onc is very up to date with all the latest studies and research.

Totally cool to see this story. FYI....I take 100mg Celebrex with 1,500mg Xeloda 2x/day. No hip pain or back pain despite CT scans now saying that I have osteoarthritis in those areas. If it's helping to kill cancer cells....HALLELUIAH!!!!!


Posts: 172
Joined: Jul 2012

How completely wonderful, awesome that you had a complete response to treatments. You are one very lucky person :)

I think your Onc is being very cautious and I like that. Stage 4 cancer is nothing to mess around with. Xeloda is fairly easy to tolerate especially at a low dose. I take 3,000mg/day and I don't have any issues. Been doing it for over 2 years now.

If you don't want to take Xeloda, then I would encourage you to seek other alternative treatments that will help to keep your NED status that way. The only problem I see with doing nothing is that the cancer moved to your lung. That means it's in the blood. A PET scan doesn't catch the singular cells that want to migrate and hide in other areas. I know you did 6 months of Folfiri but cells can mutate and adapt. I'm wondering if your Onc wants you on Xeloda to catch any of those sneaky ones that are just waiting for the right moment to start another hotel.

You have to do what's good for you :)

joemetz's picture
Posts: 493
Joined: Nov 2011

i really appreciate this post and this info from everyone.

i am scheduled to begin Xeloda and Avastin in a few weeks...

meeting with Onc on Sept 6th and can't wait to talk about these ideas as well.

thanks again for sharing.

Joe Metz

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