All about Xeloda
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I haven't been on here for a while. Happy dance to those of you getting good results from Madam X. I'm still on 4000 mg dose - two weeks on and one week off since Nov 2015. Interesting during the two weeks I'm on Xeloda, really have tolerable symptoms with HFS. But that week off, killer symptoms, mainly my hands. Still using Vicks VapoRub on my feet with good results. If I could only find something for my fingers. Bought some rubber tips to wear to see if that slows down the "leaking" from the pressure of typing. Good for you Babs for making as far as you did on the high dose. Will see how much longer I can stand it. also use the medical marijuana as Minnesota has passed the law for medical use. I use the high CBD oil with low thc. I do not get high - I actually now can sleep at least 7 hours. It has really helped greatly. I started two months ago and have my scans on the 3rd. My MD wants to see if it has helped my mets at all. My CA 27/29 scored went down from 107 now at 34 last month. Haven't seen that score since 2013. Had bloodwork today, hopefully my scores move in the right direction. Take care everybody, we are having beautiful weather in Minnesota this week. Going to the lake in Wisconsin to soak up some Vitamin D and take a mental break while waiting for results. 🌞
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While my wife is no more taking Xeloda but Doxil, another drug that causes HFS (or PPE as some oncologists prefer to name it), she is trying a new remedy that seems very effective for Doxil. It might work well for Xeloda too, since the mechanism that causes HFS seems to be exactly the same. Lulubee helped a great finding the ingredients. Thank you Lulubee!
If anybody is interested I wrote more details in this thread https://community.breastcancer.org/forum/8/topics/...
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Thanks for sharing. I followed your thread. Can you give me a "recipe" so I can look for the ingredients and try to make it? I wonder what ingredients in the Vicks help my feet so much but not my hands. My hands seem to be getting worse, I may have to drop the dose. Uuggh!
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Medclisa,
I started mixing one spoon of Antioxidant Complex T5 with six spoons of a good emollient cream; I actually dose one teaspoon of T5 with two tablespoons of cream, which is the same proportion. The Antioxidant Complex T5 I bought from the Herbarie: http://www.theherbarie.com/Antioxidant-Complex-T-5.... For the cream, any good cream product would be good; I started with Ava Body Butter by AvaAndersonNonToxic.com because I already had it available, and now I switched to Aveeno Skin Relief bought from Walgreens.
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Andrea, I have had muscle weekness & loss of balance. I was on taxol first which I could not tolerate, than Xeloda. I fell 4 or 5 times, last one breaking my R wrist. 3 more weeks in cast. I stopped all chemo
Terri
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have any of those with balance issues asked about physical therapy? I went to PT after my Brian surgeries and it really helped me . With all the therapies wears in usually PT will be covered by insurance. Worth a shot
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Sorry to have disappeared. I fell into a funk, I fear.
I have finished cycle 6. What happened during cycle 6? Well, I became a grandmother! The most beautiful child has been born. She was a bit reluctant to come into this world, but now that she is here, she is surround by an entire village that is smitten.
Any my feet continued to get worse. My HFS is manifested by burning pain. If you look at my feet they don't say "I hurt like hell" but they do hurt like hell. The only time I get relief is when I go to our bathroom, which has ugly marble tile. The tile is cool. Oh does this feel lovely. But I really can't spend my days standing in the bathroom. Nor can I stand on my feet for too many hours. So, I searched. I searched for cooling pads for feet and found nothing. The feet part of the search gets me warming pads. The cooling part of the search gets me laptop coolers. Has anyone seen something that will cool my feet while I am working at my desk? Or a cooling insert for shoes? Any ideas?
I had my PET scan on Friday. Will get the results on Tuesday. Let's see if this this stuff is doing its job.
*susan*
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Susan. Hoping the scans are good!!!! The HFS is not easy!!!! Holding your hand til you get the results
Bab
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Susan, so sorry about your feet. I can only think of those cooling gels, and maybe just rest your feet on them. Or those ice gell packs for coolers? I hear ya about they don't look that bad, but hurt like hell. Praying for good scan results on Tuesday.
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Speaking of the lotion, I read a study on using creams with Urea more than 10% on hands and feet and that it worked really well. Bought some Eucerin with Urea on Amazon. Crossing my fingers. Good luck on your scans Susan, and congrats on your Grandbaby! Below is the Breast Cancer.org article, but I also have the real study if any wants it.
http://www.breastcancer.org/research-news/urea-cream-better-for-hand-foot-syndrome
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Purrrana,
A control group study found that the use of urea based creams are ineffective in preventing HFS symptoms. As RosesToeses put it in a previous comment, we are talking apples and oranges; the lotion I'm referring to, if it proves to be working, would prevent and reverse symptoms. So far it does reverse HFS symptoms caused by a different chemotherapy, and I'm wondering if it would do the same for Xeloda.
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FYI
I mixed urea with udderly smooth and it was not effective for me
Babs
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thank you left foot foward. I am walking on my treadmill with a slight incline to help my quads, but PT sounds like a good idea.
Ibcmets, I'm sorry you had such bad luck. I hope you have found something that works for you.
Susan, I think the cooler gel packs would work nice in you office. You could probably keep it in the office fridge/freezer to keep it coo
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I purchased Udderly Smooth Extra Care 20 on Amazon. It contains 20% urea. My oncologist said supposedly urea can help with HFS.
I used the product on my feet then covered with socks before bed. After using the product for two weeks I decided it isn't any more helpful than any generic body lotion I've tried in the past.
Too bad...I was really hoping this one would work.
Kessala
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Had anyone had trouble with facial and eye puffiness on Xeloda? I am puffy in the face and it sucks. I look terrible. No puffiness anywhere else on my body. People ask if I have been crying. Working out helps a tad but not enough to make a dent in the problem. I drink tons of water and eat a healthy diet and don't have a weight problem. I want this puffy face gone!
As for creams, I use O'Keefe's hand cream and foot cream with urea. Not sure they are any better than other intense creams. On my hands, I also alternate with Penetrex, which contains arnica, B6 and various natural anti-inflammatory ingredients. It is primarily used for arthritis, bruising or muscle injuries but seems to help a bit with my Xeloda hand pain and moisturizes as richly as the other cream. I figured since arnica helps with bruising and bleeding, it may help tighten up those leaky capillaries. It is no holy grail but does help more than anything else.
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JFL,
My experience with puffy eyelids: I went to the ophthalmologist because the eyelids were so swollen it looked like an infection. The doctor suggested a small amount of rice in a sandwich bag, put it in the microwave for until it gets very warm (not hot, but warm, in my microwave it takes 35 sec). Put it on eyelid for 5 minutes; do it three times a day.
The GP had suggested expensive antibiotics, but that would not have been any help. Apparently the swelling is caused by the ducts in the eyelid, which have natural oil in it; the oil thickens up, and tends to plug the ducts. The warm rice pack makes the oil fluid again, and unplugs the ducts. This could also be the cause of dry eyes and tears, because the oil serves the purpose of mixing with lacrimal fluid, and limiting evaporation of the wet film on the eye: no oil causes dryer eyes and tears.
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Thanks for the info, gciriani. I didn't think of it potentially being caused by the ducts. That could be it. When I was on Taxotere, my ducts completely closed and I had to have them reopened with an icepick-type device. It is a side effect in a very small percentage of patients on that chemo. Not sure whether Xeloda is known to cause tear duct issues.
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The PET results are in. Pleura lining is resolved. Bone mets have reduced in uptake by about 40%. Tumor markers [which are generally accurate for me] have gone down over 50% since starting Xeloda. This stuff is working! So the discussion turned to "how can we make sure you can manage the toxicity levels so you stay on this for a good long time." After considering all the options, we have chosen 7 on/7 off schedule keeping me at 6 pills per day. Dr. C is confident that this protocol, developed at Sloan, will be effective for me now that my tumors have been knocked back.
I start cycle 7A tomorrow morning. Gonna celebrate with white carbs! English muffin!
*susan*
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Susan that's great news. You need a bigger celebration!!!! The SE's though not easy are worth it with the kind of results you had!!!!!!
Happy Dance Time!
Babs
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Babs,
No dancing on these feet these days! But yes, this is a real milestone. Have i mentioned that I am now a Grandma? That is the real celebration. She lives close by. My daughter loves having me nearby. I am smitten!
Here she is at about 10 hrs old. She is now 10-days old.
*susan*
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Susan,
Smitten as you should be!!!! That's the real joy! What a beautiful baby!!!! Love and kiss her up from all of us.
Barbara
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Susan, great news on the PET results! Congrats on the beautiful, healthy baby granddaughter! So precious. Your daughter is so lucky to have you close by. I would love to have my Mom nearby to help and share in the day to day milestones of my 16-month old
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made a big decision today at my oncologists office. I am going to take one cycle of Xeloda off when I travel to Ireland in June. A vacation from chemo while on vacation. This will be the first time since December if 2012 I'm off Xeloda except for when I had brain and liver surgery. It will be nice I think.
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yay Susan
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Susan, congratulations on the PET and markers, and big, big congratulations on that beautiful granddaughter!
LFF, good luck on the Ireland vacation and Xeloda vacation--hope both are wonderful!
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LFF. I think you deserve the double vacation! Sometimes it's all about enjoying life!!!!
Babs
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Do people loose their while on Zelda?
Thanks
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Random question: is Xeloda available as generic? I can't seem to find this information.
Thanks!
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Cjanet, yes Xeloda is available as a generic drug.
My mail drug supplier used to ship mylan here in the USA; the names probably differ from country to country. If you type in your search browser "generic capecitabine" the autocompletion feature will probably show a few alternatives.
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Probably my last cycle on Xeloda for now.. Numb Chin Syndrome is worse, I am chewing my own teeth.. Yuck!
Not really looking forward to TM announcement .. Skipped the last one anyway..
Ladies, I dated almost 4,5 years with X.. Always welcome to PM me with anything that concerns you.. Just anytime.. Bye for now
Hugs
Ebr
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