All about Xeloda
Comments
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I forgot to say I take Cetirizine every day for allergies- not sure if that helps.
I think what has been shown over and over re decreasing cancer is to exercise every day and no to little alcohol.
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anotherone...your onc will determine your dosage. I started out at 2,000 at 14/7, but since I was eating too many foods high in folic acid, my feet were bad after 2 weeks.
I then went to 7/7 and HFS was still bad, but I tolerated it for 3 years. Now that I know to avoid folic acid & folate foods, my hands and feet are just dry. After I had to take a 7 week break, I begged to go up to 2,500 and I am still okay as long as I watch my diet.
I am also on Herceptin.
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threetree-thanks for the compliment. I did everything right and my diet was very healthy...but still got metastatic and metaplastic MBC. When first dx'd. I continued to eat as healthily as possible, but my liver mets went wild. Chemo is what got rid of the mets.
I also don't touch alcohol or any alternative supplements.
I can't imagine taking Benadryl every day for the pain if our diet is the problem. That is like putting a bandaid on it. And Benadryl every day surely isn't healthy, or really, anything to mask the pain. But I also don't take very long walks. I am not allowed to exercise since my bones break so easily (osteoporosis). But since my dx, I did exercise daily until I started to have problems.
My diet now is very confusing. I lost 25 pounds by cutting out the sweets, and then developed hypoglycemia. So now I have to eat low folic/folate, low sugar, low carbs, and high sodium. I sure don't have a normal diet by any means.
But I am still losing weight, which makes me happy. About 10-15 pounds more to go!
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nkb...congrats Grandma!!
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As instructed by my MO, I've been off Xeloda for 15 days due to HFS symptoms. Up until the "Hold" order my main HFS symptoms have been intense redness, burning, and numbness. My fingers are much better now and my feet are better too i.e. normal color when I stay off my feet, but they get red and burning after my daily walk or if I'm on my feet for several hours. I've also developed two dime sized areas of peeling. I've been shopping for cushioned shoes like Hoka or Sketchers, but haven't found a pair that's comfortable yet - will keep trying. I've also been using my rosacea skin care products on my feet and think they may be helping somewhat - in addition to the Udder Balm which I've been using. Elevating my feet for a short while (like 10 minutes) also seems to help somewhat, so I'm puzzled why my feet get redder during the night - too hot in bed? I start cycle 6 Monday at 3000mg/day on a new 7on/7off schedule. I'm a bit nervous about the HFS symptoms taking off again like gang busters. I will be more than ready to ask for a dose reduction to 2500mg/day, but I'm not sure my MO will be receptive.
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Sounds like 3000 is too high of a dose. I would ask for a reduction esp if you know it is woking already. good luck, having the HFS is no fun- I only had it briefly- life is better without it.
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weninwi Hope your 7/7 schedule works well for you,I found it more tolerable than 14/7. I remember my MO saying that HFS peaks near day 10 so 7/7 should help. I'm sure your MO will reduce if needed. Sending positive vibes for success, fingers crossed.
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Folic acid and folate
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Update on my hand/foot symptoms: I was instructed to take 2 weeks off rather than the usual 1 week off due to hand/foot symptoms which were red, burning, numbness, some peeling. I started back on a new 3000mg/day 7on/7off last week and tomorrow I start my week off. My feet are so much better. I think the extra week off helped, but I also made other changes, so exactly which of the changes has helped is not completely clear to me. To further reduce my folate or folic acid intake I cut back on but didn't stop eating peanut butter. For skin care I started using Rosacea Care products that I had left over from when I developed that problem (now resolved). The active ingredient in their products for reducing redness is Willowherb. They have their own website, and a few but not all of their products are also available on Amazon. I also started using another cream TriDerma MD Cream for ulcers, pressure sores, etc. This product is homeopathic with ingredients like calendula, aloe vera, shea butter, Vit A and D, plus more. I got it from Amazon. Lastly, I got new shoes with lots of cushioning which I think has helped for my walks. I had cut back to 10-15 minute walks when my feet were bad, but I'm now back up to 30 minutes.
I just read about Xeloda in combination with Tesetaxel in the phase 3 CONTESSA trial which showed longer progressive free survival vs Xeloda alone. Does anyone know anything about this?
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weninwi...Good luck! I gave up walking long ago, but I hope that you can continue with it. I have problems walking anyway since I have a partially paralyzed left diaphragm. That happened when I had chest node mets and the anterior mediastinum node damaged the nerve going down to my diaphragm. But I do get my yardwork done without problems.
I looked up Tesetaxel and it looks like it has been discontinued.
A little bit of peanut butter should be okay. But I used to eat it by the spoonful right from the jar. On the other hand, last night I ate a Healthy Choice chicken and broccoli dinner with NO foot pain today!!!
I swear by Skechers for daily wear out of my house. But there are better ones that are more expensive, like the Hokas.
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weninwi Glad to hear your getting things under control, great news! I still like my walks also, I also love Skechers.
Not familiar with that trial but that sounds promising.
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For those of you on 7/7 schedule, do you feel less tired? I’m on 14 / 7 schedule, week two after radiation and I feel so exhausted I just want to check myself into a nursing home. I am pretty young still.
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mamacure,
I started Xeloda late December on 14/7 schedule. I switched from 14/7 to 7/7 about three weeks ago and I definitely have fewer side effects, especially less redness and numbness of my feet and fingers. The fatigue I experience is about the same as I've experienced on other treatments, so not more than usual. My MO did tell me Xeloda can cause anemia (low HGB, low HCT).
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mamacure, I'm no longer on Xeloda but was on a 7/7 schedule. I napped every day. I'm now just on Faslodex, and I nap every once in a while. I could still take a nap every day, but I've gotten around it most days.
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My wife is back on xeloda, after having gone to cd4/6 inhibitors for approx 6 years post xeloda. She switched to palbociclib, not because the xeloda wasn't effective anymore (approx 1 year on xeloda), but because she had the opportunity to try palbo. Now that both palbo and abemaciclib seem to have lost their effectiveness, she is back on xeloda. Hopefully it works as well as it did back then.
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Husband, interesting approach. I hope this works for her. I am currently on abemaciclib--I was on pablo initially for four years before affinitor then Xeloda--and am wondering whether xeloda might work for me again when this fails.
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Back when she was first diagnosed with stage iv liver mets in 2016, there was no access to cdk4/6 inhibitors. They hadn't yet been approved here in Canada. Basic strategy was to go straight to chemo if there were visceral mets. So we chose one of the more tolerable chemos, xeloda, but switched where there was a narrow window of availability for palbo on a compassionate patient basis, prior to its approval for funding in Canada. Until it was approved for funding, you couldn't buy it, or get it prescribed, but as the trials had been completed and it was awaiting approval, compassionate basis was available.
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Husband11- I am hoping that Xeloda works well for her. I thought that it was very tolerable on 2000mg per day 7/7. I never had a true progression per PET, but, lots of labs were getting abnormal and I started having bone pain so we switched to Enhertu.
I do think that more studies on circling back to drugs we did well on would be useful especially when the rest of the available ones are not good choices. Here's to a good run until we get a PROTAC or Camizestant etc- oral is so much less cumbersome.
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Wow-these changes make me crazy. I can no longer mark this forum as a favorite?
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Hi @denny123, so "Favorites" is now "Bookmarks" on the new platform.
If you look at the top right corner of the thread (to the left of the button to make a new post), you will see an icon that looks like a bookmark. If it is red, this means that the current thread is already saved to your bookmarks. If you click it again, you can remove it from your current saved bookmarks.
You can find your "Bookmarks" under the "Quick Links" navigation on the right-hand side of the page.
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My Kroger pharmacy couldn’t fill my Xeloda prescription this week because it is on backorder from the manufacturer they deal with. Crisis avoided tho. I get a call every month from a nurse who works for the cancer center contacting patients who take oral chemo, so I reached out to her and she was able to find a pharmacy that will ship it to me. It’s times like this I do feel fortunate to have a medical network that can help out. and for once the situation was resolved in half a day instead of much longer!
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divinemrsm,
Thanks for the heads up about the backorder for Xeloda….thankfully resolved, but concerning. I'm due for a refill and will call my specialty pharmacy (Accredo) to find out if they are having the same problem. I certainly hope not.
Just had my chest and abdominal CT scans and also bone scan. I haven't had my appt yet with my MO, but as I read the reports the lesions in my liver and bones are stable (had progression last fall), and no new lesions in other parts. Thankfully.
I'm on 3000mg 7on/7off and tolerating it well. My hand/foot symptoms are much less; still applying Udder balm twice a day; wearing Sketchers when out and about. My fingernails are splitting, but I started using Nail Tek #4 Strengthener (Amazon) on the suggestion of another commenter (I don't remember who) and it seems to be helping.
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weninwi, happy to hear about your stable scans!
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Congrats Weninwi!
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Wow! I have so much to catch up with as well as the new look of the forum. I have been pretty sick from my pleural effusions so I have not had time to read the forums.
I am just starting my third cycle on the 7/7 schedule with an unintended delay due to specialty pharmacy snafu and what do I get canker sores and two cracked/ peeling fingers. Showed my onc today and was told it was from the Xeloda. I was surprised it would show up even during an "off" time. Onc suggested I use Helping Hands. I see others have recommended some other creams , I am curious if they are unscented. Thanks to all who share their suggestions.
weninwi Glad to hear good news about your scans. :)
Now , off to explore the new forums.
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bookgal,
Regarding cancer sores….another commenter shared that either her doctor or dentist suggested using Xlear nose irrigation packets as a mouth wash to help keep oral cavity healthy. Just mix a packet into a cup of water, swish and spit. Ingredients are xylitol, sodium chloride, sodium bicarbonate. I've started using it nightly and get it from Amazon, but Walgreens, etc may carry it. My own periodontist recommends AO ProVantage for any mouth sores. It also contains xylitol and patent pending antioxidants. I get it from Amazon; it's expensive, but it does work. I only use it when I get a mouth sore. For my hands and feet I use Original Udder Balm which is unscented (there's another version that's scented and I don't like it as well). When my fingers were bothering me (numbness with fine peeling) I did wear white cotton gloves for a while at night (available at Walgreens).
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bookgal, I always seek out fragrance-free creams and lotions since even the faintest of their smells can give me an instant headache.
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Every time I get used to the forum changes…it changes.
I saw my onc today for my CT scan results and they are good! My scan 3 months ago showed several "spots" here and there. Now I only have one suspicious 5mm elongated left lung spot. But it is suspected to be from an infection.
That is tiny enough to not worry about.
So I guess that I am still NED. 21 years and 5 months since my dx of MBC. Currently on Xeloda and Herceptin bio-similar of Trazimera, Trastuzumab.
But since I have been having an allergic-type reaction from that IV, I asked my onc if I can go back to Herceptin. We will see.
Denise
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That’s great, Denny123. I hope you get to switch back.
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