Oral chemo - xeloda

amydavis1977

Anyone had any experience with oral chemo xeloda ?? I welcome any suggestions, ideas, outcome success stories if any, advice, side effects (specifically with regards to psychological). I want to know the good, the bad, and the ugly !

Bre

I was taking Capecitabine earlier this year. I’m not a success story though; I couldn’t tolerate the drug and after three shortened rounds due to side effects and resulting dehydration necessitating IV fluids, we decided to stop it. I may be the exception though. I have a friend with stage IV metastatic colon cancer who tolerated it just fine. And she was on a higher dose than I was.

This is the information, including side effects, that I was gives by my oncologist:

https://chemocare.com/chemotherapy/drug-info/xeloda.aspx

BoulderSteve

I took Xeloda twice daily during the radiation portion of my treatment. I recall that the dose was high enough that the pharmacy refused to fill the prescription and my oncologist had to prescribe "refills" in order for me to get the dose he wanted me to take.

The main side effect I experienced that was specific to the Xeloda was an incredible rash and swelling of my feet. I was unable to walk by the end of the treatment (25 days). The rash and swelling quickly dissipated after completing the treatment.

I don't recall any specifically psychological side effects. Keep in mind that I had just finished 8 rounds of chemo prior to radiation and Xeloda so my brain was already reeling. It was a tough journey.

After I had finished chemo and radiation/Xeloda, my imaging showed that my main tumor had responded exceptionally well. My oncologist was on fence about recommending the surgery to remove what was left. I opted to do the surgery and was glad that I did since pathology showed that the cancer cells were still viable in the center of the tumor.

Tigerfan92

I am going through it right now and have 2 days left of chemo radiation. Yay!! I take Xeloda twice a day (2500-3000mg) each day I have radiation. The biggest side effect for me is nausea. Onc prescribed Zofran and it helps but doesn’t completely alleviate it. After this, I have a month break and start 8 rounds of IV chemo and I think it will be Folfox.

Once I finish the 8 rounds, I will have an ileostomy reversal. Had resection surgery with an ileostomy April 2023. We thought it was caught early but pathology from surgery revealed lymph node involvement and it quickly moved to Stage 3.

STI_1911

Hi,

I had to go through this like 2 years ago. It started with a combination of Oxaliplatin and Capecitabin. It should only be 4 cycles but since i couldn't tolerate the oxaliplatin, we switched to 6 month Capecitabin only.

I remember nausea to be the dominating side effect. And after the final dose it took about 1 year until my stomach and colon was able to accept regular food.

Psychological side effect was depression due to lack of sleep. This took also about one year until it was back to normal. What helped me a lot was St. John's wort. I still take it every now and then.

All the best

Capox Dude

I was never nauseous on xeloda . I did have bad diarrhea that needed to be controlled with Imodium and prescription medication. I have a little bit of nerve damage in my feet, which is just numbness not pain. More importantly, while I have a ways to go, I am four years down the road and NED, and so with that one and only metric, I don’t mind the drug at all. Others had a very different experience. We are all different, and there is no way of knowing until we take it.

Forbin

i had no issues with xeloda. Took 7 big pills a day 3 in the morning 4 at night. Just the tips of my fingers became smooth(no fingerprints). No nausea or anything like that. Oxaliplatin on the other hand was tough.

Rugzie1965

I'm currently taking Xeloda. The only side effects are my gums and mouth. Very tender and sore. I consistently swish with salt water. I know other folks who could not tolerate it at all. I'm grateful that I can. I had a bad reaction to Oxaliplatin and have stopped that infusion.

Riksnewlife

My wife is going on year 5 with stage 4 ILC and just started taking xeloda after finding her cancer mutated. It started out with minimal side effects but now horrible cramping and diarrhea. Horrible fatigue and she hasn't left the bed for 3 days. I know it attacks the lining of the bowels and the toxicity builds. Shes on about 3000 mg and just got off for a week 2 days ago but the side effects haven't let up yet. Imodium isn't really helping much and shes losing weight from about 130 to 120. Its time to find the balance on the dosage quickly. The oncologist is pressing to find the boundary but finding it is a horrible process coming from my perspective as the caretaking husband. We just turned 60 and still working. Its great to see your managing it and maybe a brighter future is in store.

Her cancer spread to her ureter and probably to her small intestine but the jury is still out on that.

Riksnewlife

https://csn.cancer.org/discussion/comment/1707179#Comment_1707179

My wife is not tolerating it well either from a dosage increase. She wants to keep trying but will have to reduce the dosage. Horrible digestive side effects. We may have to go get an IV to get her some sustenance and hydrated after 3 days of bad diarrhea. She also has face swelling around the eyes mostly

tannous

I was diagnosed with low-grade adenocarcinoma of the rectum and underwent high anterior rectum resection with protective ileostomy on 5 October 2023, at Heidelberg University Hospital in Heidelberg Germany.

The pathological test done after surgery showed showed cancerous cells in 2 lymph nodes out of 43 nodes tested.

I started taking Capecitabine (Xeloda) on 21 November 2023 and will do two cycles which will end on 26 December 2023.

I d not want to wait until I do the 6 treatment cycles then do my reverse ileostomy surgery. I would like to do my reverse ileostomy surgery early January 2024. Because it is not easy living with a stoma.

My question is the following: can I do my reverse surgery after the second treatment cycle and then continue treatment with Capecitabine? Or, it i NOT POSSIBLE to continue treatment after the reverse ileostomy has been performed?

Thank you for any input and I wish all a speedy recovery and good health.

STI_1911

Hello tannous,

I am not an expert nor a doctor. What i am saying is just my logical thinking.

Chemo affects especially fast reproducing cells such as colon tissue. You would have to wait until the tissue has recovered from the surgery before you hit it again with chemo. Maybe that period is too long to be effective against cancer cells that might be present elswhere in your body.

But hey, go ahead and ask your oncologist about that idea.

I can imagine how bad life is with a stoma and i am glad it wasn't needed in my case. But i would recommand to rather go for zhe safe way than for the most convenient one. The time might be harder for you but you can be sure it's limited and safer.

All the best

CornellDeville

My wife's Xeloda arrived today and we started it this morning. 1000mg. And then another 1000mg tonight. It's too early to tell how she will do with the side effect, but we will see what happens. We are praying this drug lives up to its expectations. The primary issue at this point is her appetite; I have a hard time getting over 700 calories a day into her system, and keeping her hydrated is an equally high hurdle. I would love to hear more success stories on this drug because our hopes are high. Best wishes and success to all of you. I have a pretty good idea of what you're all going through. KUDOs to all of you devoted caregivers out there.

Christine_DC

Hi! I was on CAPOX (capecitabine/ xeloda + Oxaliplatin) for 3 months in 2022 to treat stage 3 colon cancer post colon resection. I personally did not experience any major side effects from capecitabine, only debilitating symptoms from Oxaliplatin. I don’t think capecitabine worked for me.

In January 2024, it was confirmed that colon cancer metastasized to liver and had liver resection to remove 3.5cm tumor. My oncologist said I’ll be on full IV chemotherapy this time (likely FOLFOX ).