Xeloda Side Affects

[ForestHermit]

Anyone on here with knowledge on Xeloda. Anyone who has struggled or is struggling with Side Affects from this drug have any information or input to help. Liver Mets and last blood work said I was fine for latest round.

[Buffwright]

I had experience on xeloda for 1 year at 2000 mg/day. I started at 3000 and it was too much for me (125 lbs). Xeloda was pretty easy to tolerate. My hair grew back (after Piqray) and I slept pretty well. The best part is that it was covered by Medicare Part B! Zero copay after $1030 for Piqray was a dream! Since November, I’ve been on Enhertu.

[ForestHermit in reply to Buffwright]

Any idea what's the average time to get on it? Ty

[Buffwright in reply to ForestHermit]

I haven’t seen any data. Some people have posted 5 years or more. It varies so much by individual, an average wouldn’t even be useful. Side effects are easier if you’re on a low dose - at least it was so for me.

[Shafight]

I’m finding xeloda pretty easy. How long can I stay on this

[PJBinMI]

I was on Xeloda for several months this year. Initial dose had to be lowered and I ended up on 1500 mg twice a day, one week on, one week off. My hair thinned and I had hand-foot syndrome but it was tolerable. I'm a long timer with MBC, extensive bone mets since diagnosis in March, 2004, and Xeloda was the first chemo I was prescribed, after cancer changed from estrogen receptor + to triple negative. One thing I've learned is that we really need to report side effects soon, by phoning our onc's office and speaking with a nurse. Easier to get things managed early on.

[Fiercefighter13]

I’m on Xeloda now, and have been on it for 13 months. It’s my home run drug, as my doctor calls it. It’s the first time my markers have hit normal since my Metz journey began 4 1/2 years ago. My side effects are hand and foot which cause me severe pain, and fatigue with joint, muscle and bone pain. These are very rare side effects. My hair has grown back thick and long since stopping the cdk/endocrine therapies. Xeloda seems to be a mixed bag with longevity depending on the patient. I’ve heard it only lasts up to a year for most but some do great for years. I’m hoping to be a many year patient. My side effects are kind of odd, but the hand and foot part is very common. I’m lucky I suppose since I have none of the GI side effects. As far as treating the side effects, I’m using 10 and 20 % urea creams for the hand and foot and CBD lotion as well. I was on Ritalin for the fatigue but it really wasn’t great so I don’t use that anymore, and just drink coffee for a lift here and there. For the pain I’m using Oxycodone because I can’t take NSAIDs because my cancer is in my stomach and can cause bleeding ulcers. It’s all been pretty miserable but nothing compared to most IV chemos so I’m towing the line as long as I can. I’m not sure how helpful my info is for you, but hope it helps!!

[Mattwillmw]

If u r struggling with your hands and feet.... Cream called Udderly Smooth Body Cream worked like no other for my Wife. About 14.00 GBP on Amazon red and white tub

[Flowerfriend]

Will start my 9th round of Xeloda tomorrow-1500 mg bid, one week on, one week off. No side effects and my hair growing back after loss due to cdk meds Ibrance, then Kisqali. I feel good and not nearly as tired as with cdk. Also gained back some weight, from 115 to 123 now.Mixed results. Liver lesions decreased in size but lymph nodes outside organs growing and marker CA 27-29 continues to rise>2000.

[Flower1513 in reply to Flowerfriend]

What does your onc say about mixed results ? Are they keeping you on xeloda? Sometimes I wonder if they pull people off to fast? Thanks!!!

[Flowerfriend in reply to Flower1513]

Started 10th Xeloda cycle today but CT scheduled 2 days from today, as 3 weeks ago my CA 27-29 rose to >3000, and in view of mixed results with scans 2 months ago. I feel good and happy to have hair again, wt stable at 120 lbs. I've lost confidence in markers being meaningful for me. My onc and I reluctant to change, but we'll see what Friday's CT indicates.Apparently you are a flower lover too, Flower friend. I am in California right now and relishing the blossoms

Blooms at sunset, central California

[Flower1513 in reply to Flowerfriend]

Just beautiful ! Thank you for the pic❤️ My mom has scans tomorrow first time since starting Xeloda . She finished her 4th cycle today and scans tomorrow. Her tumor marker was still up when they checked about 2 weeks ago. Her onc said hopefully it was just lagging. Her blood work looks good and her liver function looks good. She did have to get a plural effusion drained last week.

[Flowerfriend in reply to Flower1513]

I hope your mother feels well and scans show good response to the xeloda.

[Iwasborntodothis]

I agree with all of the above - it worked great for me for a year. You have to be diligent with your hands and feet. I used several products - OKeefes Healthy feet, Bag Balm, and some mentioned above. I cycled through them and I ALWAYS wore socks - all the time. I bought a box of cotton gloves from an online excema store but my hands were never really that bad. I think the worst part for me was that I largely lost my taste buds so that eating was not fun. I have those back now and I love it. When it stopped working, my intestinal issues were pretty bad and I lost a lot of weight. I think I have several posts about my time on the drug and I hope they help.