All about Xeloda
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Mystical...I also use Aquaphor on hands and feet at night with silicone socks and food service gloves. I also use Aquaphor through the day.
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Has anyone had issues with liver enzymes sky rocketing on Xeloda? I don't have liver mets that we know of and my ALT and AST are over 200. Normal being under 32. My side has been sore the last week. No fever. that rash on arms dizziness
Being tested for liver stuff damage now hopefully with labwork tomorrow and getting an urgent CT.
I know I read it can cause liver toxicity but my MO doesn't know if that is the cause. Hoping for answers soon but wanted to check to see if anyone else has dealt with similar
Thank you.
Edited to add that my ca15-3 is 39. Down from 42 three weeks ago.
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thanks everyone for the info on the Aquaphor and Medi-Honey! Much appreciated.
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Lynn(Joyner) how are your fingers doing?
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Hello Xeloders,
I wanted to share info from my MO visit in case it helps others.
I continue to struggle with red feet, now peeling after being off my 2300 mg/day dose for 6 days. I am to stay off Xeloda until better, then restart at 2000 mg/day, 7 days on, 7 days off. You guys are probably thinking, what took so long?
I also had blood drawn for the DPD enzyme as she suspects I am a high metabolizer and might have partial DPD gene. If so, I can still stay on this drug.
For my acid reflux (side effect), I am to take Pepcid AC, not Prilosec as that interfers with Xeloda.
My red rash (side effect) improves when off drug. My MO suspects it is the 5 FU targeting my preskin cancers. So two for one! The rash appears where I have sun damage.
Now for good news. It is working. My liver enzymes are normal after only two cycles.
So don't lose hope..it is a process to find your right dose.
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nkb, when you had red feet while on 2300, did it clear up in 7 days before starting lower dose 2000 mg?
JoynerL, how are your fingers? Did steroid cream help? Are you getting back on your boat this summer?
The Xeloda stays in my body too long. I thought I heard my MO say that I am a high metabolizer, but that doesn't make sense. Wouldn't that mean Xrloda leaves the body efficiently? That is why my MO is testing for DPD enzyme (partial).
Although my liver enzymes and TM are decreasing, the drug is impacting my bone marrow. My wbc, anc and platelets have decreased since 3 weeks ago. My MO suspects some lingering toxicity. Just waiting now for the results. In the meantime, I am off Xeloda until feet no longer red..maybe 12 days.
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Sandi-I have been on X for 28 months and my hands and feet have stayed red. When they are really sore, they are redder.
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Denny123, that is interesting. I had grade 3 feet at 1st cycle..it was awful. Inflammation so bad that I had to rent a wheelchair.
I think my MO wants me to recover as much as possible. 2nd cycle was trending towards same problem.
My MO wasn't too concerned about staying off 2 weeks to heal. She seemed more upset that my wbc, anc, plt decreased considerably. Weird.
But I look forward to my 3rd dose reduction , now 2000 mg..plus 7on/7 off. Just like you guys!
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sandibeach57- I was on 2500- the first cycle some redness and no pain. The second cycle it got really bad around day 7, redness and burning and then hobbling around for a week. I decreased the dose myself the last 4 days and then my MO permanently decreased it. Got better in a few days - went back to 3-4 mile walks in super padded shoes and socks. This cycle the pain started about day 10 and got pretty bad by day 12, I skipped one dose and it took a few days of off meds to resolve. Not sure what this cycle will do and haven’t had a PET yet although TMS down 80%.
They don’t use the 7 days on and 7 off on the west coast it seems, but, I haven’t asked my MO about it- the pharmD said it was “unproven” I may need to do that if the side effects are truly cumulative as I have heard from people on this site.
I’m interested to know what your MO says about your metabolism of the drug.
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Sorry for this photo..will be carefully trimming blistered skin soon.
I was told stay off Xeloda until feet look better. This photo is day 9 off the chemo. I will be
starting cycle 3 at 2000 mg/day at 7 on/7 off.
Since I don't know how to compare..it appears I need to stay off a few more days? Is this what your feet look like? My hands are fine.
I am to text a photo to MO when it appears healed.
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I cut my loose skin off carefully with embroidery snips. But I didn't go off Xeloda since they didn't hurt.
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Hello!
I was diagnosed back in 2015 with Stage IV Breast Cancer - Breast, lymph and bone. Was NED for 3 years on Ibrance, Letrozole and Zometa, bone mets and lymph nodes disappeared and the tumor shrunk enough for a lumpectomy. Afinitor when the annual PET showed recurring bone mets. Afinitor was a bust - don't get me started on THAT one! Radiation for the bone and a full year of Abraxane for the rest came next. NED for nearly a year, then no more bone mets but 2 liver mets with the annual PET. MRI showed 2 liver cysts, too. I do so love winning the lottery. Anyway, oncologist wanted to try Capecitabin/Xeloda rather than go back to Abraxane considering the current health crisis and immune system issues. It was actually my suggestion and he agreed.
I've just finished my first cycle of Capecitabine/Xeloda and so far no noticeable side-effects other than a little fatigue, some mild heartburn and itchy eyes - but it is allergy season so I may give the itchy eyes a pass. I'm currently at 1500 MG twice daily for 2 weeks on and 1 week off. We're starting high and then backing off if needed. Aside from the Afinitor I tend to be mild on the side-effects on all my meds. My only concern currently is a forehead rash, starting at the hair line, blotchy, no sores or cracked skin, and slightly itchy. Again, it being allergy season - and living in Arizona and it is high summer and sweating is an Olympic sport the minute you step outside - I am concerned that it might be something other than a sweat rash.
Is this a common early side-effect? And while not really itchy - a simple rub of the finger and it's relieved - I'm concerned at it spreading. So, treating it as a side-effect - and I am in my week off right now and have a doctor appointment early next week and will discuss it with him - do any of you have some suggestions? Currently I'm just keeping the area clean and using 'Udderly Smooth' to keep it moisturized. There is no rash anywhere else - trust me, because of the Afinitor I know ALL about rashes! - and might just be paranoid. But with a side-effect list as long as Afinitor I'm a tiny bit gun shy.
And I'm horrible at computer stuff and can't figure out how to get the treatment stuff to show up below. So if you have questions, feel free to ask.
Thank you!
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Dear Kathleen9440,
Welcome to the BCO community. We are so glad that you reached out to join our members. Thanks for sharing your story and present concerns. We are sure others will be along to offer their thoughts and experiences. You might want to review some of these articles about Xeloda on our main site for additional information. It looks like you discovered how to make your treatment information appear under your signature. It is just a matter of choosing to make your information public in your profile. PM us if you have other questions. We look forward to having you here.
The Mods
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Kathleen -rash at hairline could be that Xeloda breaks down to 5FU which is used to treat precancerous sundamaged áreas. I have it also at hairline and top of R hand and nose. Other people have been told this by dermatologists
I just got my lab WBC is very low and ANC is .9- been told to hold Xeloda for another week and be super careful due to immunocompromised at this point. Anyone else experience this?
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Kathleen and nkb,
I have rash in areas where I have sun damage. Red, slighly raised, slt painful if touched. My MO also thinks it is 5FU going aftee pre cancer skin lesions. It decreases when off Xeloda. 5 FU is in skin ointments for pre skin cancer.
My past labs showed WBC, ANC, platelets decreased..but liver enzymes now normal and CA15.3 dropped 50%.
My MO said the dose that I was on was probably toxic to my feet, and also bone marrow. So off Xeloda 10 days, now back on 2000 mg/day, 7 days on, 7 days off. Started at 3300 mg, then 2800, then 2300 mg. It is a process.
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Kathleen, welcome! I agree with the 5 FU response to pre-cancerous skin mets. My dermatologist told me that this might happen, and it did. I also had an actual skin met on my forehead, which appeared just before I started Xeloda, and Xeloda zapped it quickly.
I'm going to PM you with a list of Xeloda-related suggestions I cut and pasted from the string when I started on Xeloda.
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Kathleen-welcome! I have been on X for 28 months and have a rashy spot on my scalp, that has gone away the couple of times when I had to stop X. My dermatologist gave me Clobetasol oil that I apply with a Q-Tip.
It hasn't spread anywhere else. I use Aquaphor on hands and feet night and day.
Good luck!
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NKB -
Very interesting. In my research I never came across this bit of information. If this is the cause of the rash, it's a bit of a win/win. I'll just have a funny looking forehead.
Thank you!
- Kathleen
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SandiBeach57 -
Thanks for the response. Others have said the same thing about the 5FU which makes things a bit easier and less anxious for the time being. Odd that a side effect might actually be a good thing? I'm aware of the possible Hand and Foot Syndrome and have already started using as 20% Urea cream along with the 'Udderly Smooth'. And vitamin B6 was already part of my regimen. Time will tell on that one.
I hope you can find a balance with the Xeloda and the toxicity. Starting high working your way back in dose seems to be the general rule of thumb.
- Kathleen
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JoynerL -
Thank you for the PM! It arrived safely and loads of information! Greatly appreciated. So far everyone has brought up the 5FU thing, which is a great relief. If the rash remains isolated to sun damaged areas, I'll have my answer in full.
Thanks again!
- Kathleen
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Denny123 -
2 years on Xeloda? That's great news. If I might ask, how have your tumor markers been? Mine have always a been a good indication that something is going on when a treatment stops working and was wondering if it has been that way with your regimen as well. It'd be nice to have livable side-effects and a long term therapy that will keep the cancer at bay like the Ibrance did for 3 years. The Abraxane was good for kicking it back, but not for long term.
Urea Cream 10% or higher has been recommended to me, which I'm using now as an early treatment before onset of HFS if it starts. Is Aquaphor comparable as preventative and treatment?
Thanks!
- Kathleen
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Kathleen- I am an 18 1/2 year survivor of Stage 4 MBC de novo, and have been on chemo for over 18 years. I will be on chemo for life. Original numerous liver mets, and 8 years ago, a recurrence in 2 chest nodes.
I am only on 2,000 of X a day at 7 days on and 7 days off, plus Herceptin. The fact that X has kept me NED for over 2 years is very good.
My tumor markers have never been indicative of my progression, so I just get CT scans every 3-4 months.
I did use Urea 40%, plus Clobetasol ointment and Ammonium Lactate as prescribed in the literature. My feet got really bad with many cracks. I then went to only Aquaphor at night with silicone socks and food service gloves. And I use Aquaphor on hands and feet during the day. The prescribed cotton socks and gloves just absorb the ointment and the hands and feet get too dry. When I don't want my hands to get so greasy during the day, I use Udderly Smooth. But since I spent my days on my computer with online selling, Aquaphor works well and sinks in pretty well.
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Denny123 -
18 years and counting, that is amazing. I was metastatic from the start, too - breast, lymph & bone - and hearing from others who have passed that 5 year mark is such a boost. Thank you for sharing. I've made it 5 years and am working on my next. You give me hope.
And thank you for the moisturizer regimen you use. I'm adding Aquaphor to my shopping list along with the socks and gloves. It's only my first cycle and no symptoms of HFS yet, but best to be prepared as it does seem to be so common. And I live in a desert so dry skin under normal conditions is challenging enough let alone adding side-effects.
Thank you again. Be safe and be well!
- Kathleen
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Kathleen-if you search for number - 352852396394...on Ebay. Those are the kind that I buy. Each pair lasts for several months. There are a lot of sellers for these.
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Any recommendations on comfortable sneakers/tennis shoes shoes and cushioned socks for the H&F?
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I wear these for light walking. When the local running shop reopens, I will get a different pair for longer walks..more support and cushion.
These are Sketchers, lite weight, air cooled memory foam. I wear with toe socks..a trick I learned when I was long distance runner to prevent blisters.
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One more photo. These are Sketchers. I am not advertising the company as there are others that are good. It is what the store had in stock.
Look for memory foam. If you can, try on when feet are tender to feel where there might be rubbing.. The heel of shoe has to be soft, no seams, no curves are edges. I like Bob's brand, too.
Currently, I wear my Asics cross country shoes for longer walks. I also soak my feet in cool water afterwards to stop any burning sensations.
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These are the ointments that I use. Everyone develops their own routine..find what works. Others will chime in with their experience.
I wear the blue gel cooling spa socks (Amazon) at night when my feet become more tender. The other times, I wear white cotton diabetic socks at night. Helps keep my sheets clean as I use the Aquaphor at night. During the day, I mix it up..Udderly Smooth (20% urea), Aquaphor and OKeefe"s. My feet are my main problem.
If my finger pads and thumbs start to turn red, I wear disposable food service gloves..mainly at night. But you might need them during the day, too. If gardening..please protect your hands and nails..can use the disposable gloves inside your garden gloves.
Remember, we are all different. Also, do not wait to call your MO if hands, feet become red. It is better to stop med, call and see if you need to take extra time off. You might have to dose reduce. If it gets bad, you could be taken off drug for a longer period of time. You don't want that scenerio..speaking from experience.
S
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lee- my most padded shoes are Hoka one- they are cross trainers I bought for long hikes. They are carried by many companies and have many styles. REI and Nordstrom’s have very generous return policies. At REI you can try them for months and if they don’t work- return them. I also have very comfortable l oudfl ( a Swiss brand cloudtec) padded cool max socks. I have memory foam sketchers also- not as padded, but comfortable if feet aren’t too bad.
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I also buy Skechers with Memory Foam.
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