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@jseim106

Posts: 2
Joined: May 06, 2015

Xeloda

Posted by @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 emmur16, Sue

REPLY

@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.

@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?

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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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.

@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.

@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.

@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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***confetti*** Great to get the good news, and hear there are options to pursue. Sleep tight @martid! You must be exhausted. Talk to you soon.

Liked by Sue, Ali Skahan

@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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When your tumors shrink it causes pain.

Liked by Sue

There are clinics now that are very successful in treating neuropathic pain in the legs and feet. I don’t know where U live but there are several here in Toronto ..

@tonistable

There are clinics now that are very successful in treating neuropathic pain in the legs and feet. I don’t know where U live but there are several here in Toronto ..

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I have the same problem and my Dr put me on Gablentin and it is working
for me, Hope you get some relief.

Hi
I have stage IV colon cancer with mets to liver and lungs and have been on maintainence therapy since 7/2015 which consists of 1150mg of xeloda twice a day for two weeks followed by a week off
In addition I have an infusion of Avastin every 3 weeks
I have been NED since June of 2015 thank the lord
Seems the xeloda/Avastin is working and hope it continues
Xeloda is a hard drug
I have had significant hand and foot syndrome which has lessened with time
My feet are actually pretty good and I wear protective cotton gloves most of the time which helps
Bottom line however is that I am very thankful I have been able to tolerate the drug pretty well as I have 2 friends that couldn’t handle it
In addition I work with a wonderful acupuncturist who works with cancer patients and I think this has helped as well
We just need to be strong and never give up

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