Xeloda

Posted by leesburger @jseim106, May 6, 2015

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)

Liked by Sue, emmur16

Hi jseim106. I’ve only just started taking Xeloda so I’d like to follow your journey. My initial dose is 3000 mg a day, taken for 2 weeks then take 1 week off, etc. I hope it shrinks my tumors without making me deathly ill like the chemotherapy infusions were doing to me. Thanks and take care!

@jseim106,
Now that I’ve been on Xeloda for a little over 3 months, I can relate to the foot pain and issues. I’ve been taking Xeloda for 2 weeks on and 1 week off. By the 11th day in the 2 week cycle, my feet start to crack and peel with blisters forming along my toes. Then on the 12th day (and 3 to 4 days later) it feels like I’m walking on sharp stones (and it doesn’t matter how much padding I put in my shoes, the pain makes it really hard to walk around.) I have stomach issues too, but they are tolerable. During my 1 week “off” the side effects subside and by the time the week is up and I have to start the 2 week cycle again, I’m feeling pretty good. I go for a check up on the 13th and might ask my doc if I can do 11 days on then a week off. It might prevent the blisters and pain.

I’d like to find people who’ve been on just Xeloda because I’m wondering if it really does keep shrinking tumors or at least prevent them from growing. I might have to be on it for the rest of my life, assuming it does what it’s supposed to do.

Can you give more insight. What’s it’s been like being on Xeloda? Thanks, and best wishes!

@jseim106 How is Xeloda working for you?
Xeloda (capecitabine pills) may not be working 🙁 I started taking 3000 mg daily 2 weeks on 1 week off last October. Recently my cycle was changed to 1 week on and 1 week off (still 3000 mg daily) because of severe hand/foot side effects.
However, a new MRI scan yesterday shows NEW tumors in my liver and a “suspicious lung nodule.” I’ve been hoping that Xeloda was going to shrink the existing tumor and prevent new ones, not GET MORE tumors. I’m so bummed.

@sue_in_delaware

@jseim106 How is Xeloda working for you?
Xeloda (capecitabine pills) may not be working 🙁 I started taking 3000 mg daily 2 weeks on 1 week off last October. Recently my cycle was changed to 1 week on and 1 week off (still 3000 mg daily) because of severe hand/foot side effects.
However, a new MRI scan yesterday shows NEW tumors in my liver and a “suspicious lung nodule.” I’ve been hoping that Xeloda was going to shrink the existing tumor and prevent new ones, not GET MORE tumors. I’m so bummed.

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Hi Sue,

I stopped Xeloda in December and have continued my acupuncture and Chinese herbs and so far have had a normal CEA, but won’t have a scan until June. Hoping everything stays normal. I’m not sure what to tell you. I believe I’ve had success with Vit C and acupuncture and dietary changes, but who really knows what works. Maybe there’s an acupuncturist in your area that specializes in cancer?? Let me know how you are doing!

I 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!

@sue_in_delaware

I 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!

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Sue, 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.

Liked by Sue

@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

@sue_in_delaware

@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

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At night is about the only time I take mine too. It sure beats laying there
thinking al night, doesn’t it!

I know it is a silly sentiment, but I really do wish there was a magic wand
we could wave and yours, mine, all of it, would just be gone.

From one cancer warrior to another, may your mind stay clear to make
whatever decisions are ahead, and strong to fight whatever battle you
decide to wade in to.

You take care too.
Marti

Update 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.

@sue_in_delaware

Update 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.

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Sue, 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.

Liked by Sue, salena54

A 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.

Liked by zerootonna1

A 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.

So 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.

Liked by Sue

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?

Liked by Sue

@colleenyoung

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?

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I go back to Moffitt this Friday for contrast CT scan to see if the 4
treatments have had any affect. Unfortunately I had an allergic reaction –
tongue swelled, trouble speaking and swallowing. They got it under control
before it affected my breathing. I guess I will find out Friday how that
will affect what they suggest from here. They suspect it is the oxi. and
sometimes they discontinue, sometimes they run it over a longer day – 6
hours rather than 4 with more drugs to counter allergic reactions. It will
be hard to take that again!

I have not been feeling all that great. Have managed to keep up with
household chores but that is about it. I am not in pain, but I feel
something on the right side that just does not feel “right” so I have
doubts about whether the chemo is shrinking the tumors. One is pushing up
against the outside of my liver and it feel like it is doing it more so
than it did before. I do not know if my exhaustion is from chemo or from
liver issues. Have no appetite and have lost about 12 pounds so far. In all
honesty, I am not particularly optimistic but we will hope for some good
news on Friday.

Thank you for checking on me. That is very special since I am too far south
to come to your hospital.

Thanks so much for checking on me

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