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)

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

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.

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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.

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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.

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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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@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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@colleenyoung

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.

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@colleenyoung Perhaps I put that update in the wrong place. I had posted somewhere about the bone metastases in my pelvis. Or maybe I just thought I posted it? (I am on a couple different forums and may have confused things.)

No, the radiation therapy I was referring to is what I had over a 2-week period In early May for the growth on my right ileac crest. Somehow a fast growing bone lesion had grown through my right hip bone (which probably had started back in February.) By mid-march I was in excruciating pain and felt like I was walking on a broken leg. I had to stay off it for almost 2 months, but did use a cane so that I could at least move around the house. The tests and finally the treatment took over a month to get going.
I still have some pain as I’m sure the 3 inch lesion is still there but maybe smaller? Not sure when I’ll have pelvic scans again to find out.

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@colleenyoung

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.

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No Sue, that was my oversight. You posted about your 2-week radiation treatment on your hip for bone mets here https://connect.mayoclinic.org/discussion/this-is-my-first-post-in-the-bones-joints-and-muscles-section/?pg=1#post-222984. I wonder if you’ll get scans on the 29th?

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@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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So good to hear from you @martid. The reaction to chemo sounds hellish. I hope that you will have options to choose from with respect to treatment variations. I, too, will hope for some good news on Friday, and that you get some explanation about what is going on with your right side. I will be thinking of you on Friday.

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@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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@martid So sorry what you’re going through. oh gosh, I can sympathize as your issues sound like mine! At chemo last week I started going into anaphylactic shock 3/4 of the way though the drip. They did act fast enough with steroids, atropine, benedryl etc. that it got better within 1/2 hour. My liver tumors are so painful, they push against my ribs etc. Your post sounds like I could have posted it !

We have to try to stay positive. A lot of people say it’s the only way to get through it and over come this damn disease.

Sending good thoughts and prayers.

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@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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Sue and @colleenyoung I did get good news today. My tumors are shrinking. They are having a “confab” and will include my oncologist out here, whom I have an appt. with on Monday. There is a possibility that they can go ahead with surgery; or they may try for a few more chemo treatments. I will find out on Monday. FYI – the oncologist at Moffitt says I should ignore what I am feeling on my right side; it may all be in my head because the tumors are considerably smaller than they were.
All I am focused on at this moment is that they have shrunk considerably – and that I am totally worn out.
Sue, I sure hope It gets easier. I know that I MUST start walking again immediately and am just so darn tired. I was so out of it yesterday that I left the shopping cart just sitting there behind the car! Very fortunate my husband was paying attention. Find some joy and try to focus on it for a bit. Every little bit helps.

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