Connect
Anyone taken Xeloda for a long period of time: Side effects?
I was diagnosed with Stage I colorectal 3/12, Had surgeries and chemo, and was declared NED. Then 12/13 it was back, Stage IV, mets to lung and liver. I've had chemo again and am now NED (Thank God), but am on Xeloda, and have been told it was for the rest of my life. I also take Chinese herbs and IV Vitamin C, so don't really know what has helped. I'm currently taking Xeloda, one week on, one week off : 1000mg BID.
Has anyone else taken Xeloda for a long period of time, and if so, what are the long term side effects. I have painful neuropathy in my feet and would like it to go away!
Thanks for all your help and support (I'm open to any questions about my journey & tricks that I believe have helped me)
Like
Helpful
HugInterested in more discussions like this? Go to the Colorectal Cancer Support Group.
Connect
Hey @martid. Would love to get an update from you too. I've seen you post in a few different places offering help and support to other people, but we haven't really heard how you are doing. How are you?
-
Like -
Helpful -
Hug
1 ReactionSo good to hear from you Sue and with such amazing news. By radiation, are you referring to the SIRT radiation treatment you got back in Nov last year? https://connect.mayoclinic.org/discussion/does-anyone-have-experience-with-receiving-tace-or-sirspheres-which-are-2/ or have you had more recent treatment? I've lost track (sorry).
Yeah, I wouldn't dive in to do a 2-mile walk just yet LOL. One step at a time right? When do you start physical therapy? I'll be thinking of you on the 29th.
-
Like -
Helpful -
Hug
1 ReactionA quick update...that 2 weeks of radiation therapy did help YAY. On the pain scale, it went from 10 down to a 3, then in the next 2 to 3 weeks down to a 2. The lesion is still there but somehow the radiation did something to help. I go for my checkup with them on the 29th. My insurance has allowed for me to have physical therapist come to my home to give me exercises to rebuild all the muscle tone I've lost these past months. I just started driving again last week although I still haven't attempted the 2-mile walk, but do walk around the stores when I go shopping.
-
Like -
Helpful -
Hug
2 ReactionsA quick update. I am KRAS positive. They say having this gene mutation does limit some of the potential chemo a person could use. Some chemo's not only don't work, but could be detrimental.
I'll start radiation therapy this week on that bone lesion in my right hip. I have transferred to a new Cancer center. I hope the radiation therapy gives me back the ability to walk without excruciating pain. I miss my 2-mile walks around the neighborhood which I haven't been able to do in almost 2 months.
-
Like -
Helpful -
Hug
2 ReactionsSue, I'm so sorry to hear this. I was hoping it was a pulled muscle. No one should fall through the cracks. Did you have all the test results, but they did not? I wish you strength to get the care you need and deserve. It's important to have confidence in your care team.
-
Like -
Helpful -
Hug
2 ReactionsUpdate on the lung biopsy: it is metastases. They sent out for KRAS mutation testing. Also, an MRI of abdomen and pelvis on Apr 11th shows possible bone mets (2 new lesions) ! I've been having abdominal pain and hip pain for weeks, but thought it was a simple pulled muscle that would get better any day. (I picked up my own copies of imaging and reports. The Onc has not contacted me. I don't know where we are proceeding from here. I called and asked about all these test results and they said they'd call me as soon as the results are in to discuss. Hmmmm. I feel like I've been slipping through the cracks for some time now. Perhaps I have to get my records and switch to a New Onc. I'm so bummed.
At night is about the only time I take mine too. It sure beats laying there<br />
thinking al night, doesn't it!<br />
<br />
I know it is a silly sentiment, but I really do wish there was a magic wand<br />
we could wave and yours, mine, all of it, would just be gone.<br />
<br />
From one cancer warrior to another, may your mind stay clear to make<br />
whatever decisions are ahead, and strong to fight whatever battle you<br />
decide to wade in to.<br />
<br />
You take care too.<br />
Marti<br />
-
Like -
Helpful -
Hug
3 Reactions@martid ,
thanks for your reply. So Sorry your neuropathy is bad. I do have an anti anxiety which I mainly take at night because it makes me fall asleep.
Best wishes and take care,
Sue
-
Like -
Helpful -
Hug
1 ReactionSue, just wanted to give you a boost. I so totally understand about the waiting and being in limbo. We played the "something is wrong but not sure what" game beginning in January. I am now waiting for April 6th appointment at Moffitt, where I have been referred for liver mets. from colon cancer (which was a total surprise). I hope your feet issues are better. I still have peripheral neuropathy from breast cancer chemo in 2012/13. They tell me it probably won't get any better. Hang in there. Hope the biopsy is easy on you and they get the answers back quickly. My oncologist gave me something for the anxiety, but it almost seems to make it worse & makes me not want to do anything. They do seem to work for some, so consider that option if you need to.
-
Like -
Helpful -
Hug
1 ReactionI had an appointment yesterday with an Oncologist who says I have to have a biopsy of that suspect lung nodule. I'm off Xeloda. She says it must not be working since I have the new liver tumors and now this lung nodule. She is suggesting I try Lonesurf (TAS 102) next, but won't have me start until we see the results of the lung biopsy. It's scheduled for the 24th and they say it could take 7 to 10 days till we get the results. I'm in limbo at the moment. So frustrating!