All about Xeloda
Comments
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Just had my every-three-months' PET-CT scan, and though I have extensive sclerotic bone mets throughout my skeleton, all is stable after 8 months on Xeloda (and Xgeva). No "avid uptake" anywhere. Thank God and hallelujah.
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joynerL- suchhappy news!
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Very happy for you Lynn. Praise God. Hope you are on of the long termers.
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Joyner, that is great news! Happy for you.
Snooky, I no longer have the fatigue, been on X for 4 years, just not sure when I quit having it. I think the HFS is cumulative, I have watering eyes, sometimes drippy nose and I can't stand being out in the sun for my eyes. Always in sunglasses, even when it's cloudy sometimes.
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Yay Joyner!
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Hello all, I have been on Zeloda for two cycles (2000 per day) I'm now at the end of my week off. I had thought that on my week off I'd start to feel better. But I"m not, my fatigue is worse day by day All I want to do is sleep. Is this something I should worry about?
About red bl counts, my onc messed up on the first cycle and took my blood draw while I was on my Zeloda. The red bl counts were low but not dangerously low. My onc didn't blink an eye when he saw them
Thanks for any advice
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Snooky, I felt that way too when I first started X. And I felt better at the end of my week off into the beginning of a new cycle. I do blood whether on it or or not, MO never said anything about not doing blood while on it. I don't have fatigue anymore, and I don't think you should worry.
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Dear Goldie, Bless You, that makes me feel better. I guess my body just has to get used to it.
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Lynn,
Congratulations on the great scan report!! I'm so happy for you!
Praying for continued healing!
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Joyner
Wonderful news!!
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Snooky, I wish I could tell you when the fatigue subsided, but I don't remember. Your week off, you still have 2 weeks of the drug in you, I guess our bodies have to adjust and it takes a bit for it to work through our system? Which reminds me, I need to start my 2 weeks today, almost forgot! I no longer feel any different when I'm on or off. Hang in there, I hope you have a long run it.
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Since I have been on chemo for 17 1/2 years, the fatigue never ends.
Goldie...I am the same after 20 months of Xeloda...I don't feel any better or worse whether it is my on or off week.
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Hi hope everyone is doing well,
I just curious to know, what is the next drug after xeloda.
Anyone who had xeloda and have to move to the next drug?
Thsnks for the info
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Hello, I was just told by my oncologist that I will start Xeloda next week as my Mets in my bones is showing some growth and there are some spots on my liver. Can I ask what are the side effects of Xeloda? Does it cause hair loss? I just want to be prepared for whatever may come.
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lynn1 - I totally understand your foot pain, mine feels like walking on hot crushed rocks almost knife-like. The end of my week off helped resolve 80% and my dose reduction seems to be keeping it reduced. I hope you get relief. It seems everyone is different. I have no cracks or peeling of the skin or any nail issues (yet), maybe due to vigilant application of creams and nail treatments .
Momdin
Welcome to Xeloda. Most people do not lose hair on Xeloda. You can get diarrhea, nausea, fatigue, hand and foot syndrome(HFS), mouth sores, low WBC,RBC,platelets. Your MO should have gone over the possible side effects and offered suggestions to remedy. Mine prescribed at the start magic mouth wash just in case, nausea meds and Imodium to have ready. I also got prophylactic antibiotics for when I took a trip out of state. Avoiding infections is important.
Best advice I got is lotion hands and feet morning and night starting day 1 or before. My current one is Lindi soothing balm on Amazon. I also used calmwell, polybalm nail treatment and Jasons tea tree oil. Other creams with mild urea are also suggested. It did not stop the burning/ knife-like sensation but my hands and feet are mostly soft and supple. My nails are ok by the skin around the nails is thickening and tender.
I am early in treatment(3rd cycle) so others here should have more experience and advice.
Hope your treatment works and you have minimal side effects waiting for the next scan is hard. 6 more weeks to go
Dee
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Momdin-
When I first started Xeloda in February of this year, I read through many pages of this string and cut and pasted some suggestions from others as to what helps their hand and foot syndrome side effects. Some have worked better for me than others, but here are not "notes", for what they may be worth:
Good luck with your new treatment. This is a very nice and very supportive group of patients!
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Joyner, so happy to hear your good news
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JoynerL
thank you so much for the info it was very helpful. I speak to my oncologist tomorrow and then I will start treatment.
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Hi ladies...so I speak to my MO today...and Ibrance/Let/Faslodex combo failed me...from what I am hearing it is likely she will suggest this next but I wanted to ask here before my appointment because I am scared of this stuff...ALL I keep hearing stories of (on here and FB) is that a LOT of women get ascites and psuedocirrosis....I am seriously considering saying no to this drug....
Advice/info please....
Thanks,Nicole
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Nicole, I can only speak for myself. I have been on this drug for over 4 years and have not experienced that. I find it very easy and don't recall too many women that have had those problems. It's just one of those things, what works for one, may not work for another. Same with SE's, some have some worse than others. If you do go on it, I would suggest starting at a low dose, 4-5 pills a day (500mg each)
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I think in many cases the pseudocirrosis precedes the treatment and is not caused by it. It's simply a problem with visualizing diffuse mets on an imaging technique. The cause can only be resolved by biopsy, confirming it as cancer, and not actual cirrhosis.
That said, I also think there is a certain risk in any treatment of liver mets, but treatment is essential. Here's my completely unscientific thoughts on treatment of liver mets, and that is that overly aggressive treatment may pose more risk than less aggressive treatment. The liver may react adversely to the drug itself, or to the rapid kill off of cancerous liver cells. My wife's complications started to manifest themselves after she started treatment, despite the treatment itself being very effective in killing off the cancer. Just an unsubstantiated hunch, but she might not have had it so bad if they had gone less aggressively in the dosage of the xeloda. It worked too well, too rapidly.
I go back to the reports from USC Hospital, where they prescribe a flat dose of 1000 mg 2x daily to all patients, regardless of body weight. They report they get results as good as any, and much higher patient compliance due to reduced side effects.
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Does anyone get bladder pain on Xeloda? I have had this problem for a few weeks now. I recently had a pap smear, so no problem there.
It isn't a UTI, since there is no burning. But lately I get sharp pains in my bladder....started my week on Xeloda this morning.
Also had the pains after I had my recent Herceptin IV.
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The brown spots and brown tinged crease lines from Xeloda on my hands and feet are increasing. Does anyone know if they go away when you quit Xeloda? It’s a small SE that only looks bad but doesn’t hurt. 🥴 worth it if X works!
Dee
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The brown spots went away when my wife quit xeloda.
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so after 1 cycle (3000 mg daily) and 1/2 cycle (2000mg daily) my TM dropped from 192 to 141. We dropped the dose to 2000 mg daily after first cycle because of mouth sores that would not heal. Doing much better on the 2000 mg daily. Doing 2 weeks on and 1 week off.
Hoping my drop in TM is a positive sign this drug is working. My TMs in the past have been very reliable with what my MRI results showed. Next MRI is nov 20th so about another month to go. Will get next TM nov 5th so will see what is shows.
Hugs and prayers to all
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Has anyone tried Kerasal intensive foot repair to soften the painful calluses?
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Hello all,
I have a weird situation going on with Xeloda. My markers CA 27.29 went into the normal range under 38 in September from 48 in July, 41 in August. We were thrilled it was working, but unfortunately one month after the lowest markers Ive had in a year, the marker went back up 10 points. Has anyone had this unusual response of Xeloda stopping to work after showing response this quickly? Im so worried now.. I assumed Id atleast get a few more months out of it, but am shocked that its only lasted 3 months after showing a decrease in markers.
Ann
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ann273 - an increase of only 10 points is not always an indicator of something going wrong. It could go up from an infection, a certain medication, etc.
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Yes CA27-29 can go up for a number of reasons. My MO had a patient who sprained her ankle and hers shot up to the hundreds and went back down. Any kind of inflammation can cause a rise. Some docs don’t even use it but generally docs look for trends like a climb over a few months.
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Hi Y'all,
My new MO and I are on the same page that another conventional treatment would be a good idea to deal with my liver progression after I flunked out of my immunotherapy trial in August, so I am starting on Xeloda on Monday. For the past few weeks, I've been reading through posts on this forum and thanks to Joyner, I downloaded 18 pages she had cut and pasted of tips and tricks (ie helpful advice!) posted here, so I know I'm in good company.
I'll be taking 3 pills in the morning and 3 pills at night, at least to start. Sunday night, I'm going to take an ondansetron just as a precaution, since I'll start my Xeloda Monday morning.
I take Nexium occasionally as needed, but the pharmacist cautioned that it is contraindicated with Xeloda, so I can't overdo it.
I have cotton socks & gloves and a type of udder / bag / teat / tit ( as my late, beloved farm woman friend Hilda called it) balm at the ready. The pharmacist recommended that I swish my mouth 4x daily with a baking soda rinse, so I'll do that. I have to be rigorous about mouth care because I have ONJ due to having taken Xgeva for 2 years, then having an emergency molar extraction. No bueno.
I'm cautiously optimistic and hoping this gives me some good quality time. We shall see what we shall see.
Hope everyone is having a good week -
Best, Katty
Oh yeah, should I start taking B6?
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