All about Xeloda
Comments
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I hope that I am on my way to figuring out the hand/foot thing. After 14 months on only 2,000 a day at one week on, one week off.....
I was using Ammonium Lactate, Clobetasol and Urea 40%...all prescribed by my onc. That all just made my feet very dry. My feet had so many raw areas along the edges and all of my finger joints were cracking open. So I had to take a 2 week break from X, but am still getting my Herceptin every 3 weeks.
I ordered silicone footies from eBay, slathered my feet with Aquaphor, put on the footies, and then socks to hold the footies on. Also used Aquaphor on my hands, and instead of using the suggested white cotton gloves (which just absorbed the ointment), I put on plastic food service gloves. Woke up with soft hands and feet.
CT scan in 2 days!
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Denny, all of that helps, but seems to be only for the "moment". Wishing you all the best on your scans. I have gel footies, have slept with latex gloves, etc. The best I have had was when in the Virgin Islands, my DD had to have emergency surgery. I don't know if it was the humidity or the salt air, or both.
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hmmm. Well I am stuck in PA. Maybe our humidity this summer will help. But the stuff that dried out my hands so badly really made them worse than ever in 14 months.
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Denny, thanks! I'm giving it a try. Headed to Amazon to order.
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Hi, Joyner. There's so much advice on different creams I don't know what to buy. But, I have no signs of HF and am not doing creams yet. I did try the UREA for two days. It felt awful, so thick and yucky. I finished my first round, 3000 a day, Start next one tomorrow, see MO on Friday.
I've had unbelievable energy, I'm really excited about that. I could do this TX forever, that is if it's working. Scan end of May, I think.
It's a good thing I felt good. I had a whole week of family staying with me. Also my appetite is back, everything tastes soo good, I've eaten like a horse. I'll probably gain some weight back, not good. I like the size I am now, I
bought size six cut off jeans shorts with holes. So fun.
Joyner I thought you left on the 28th? My next adventure is May 17, Retreat from Cancer with Say Yes to Hope. It will be my first one ever. No modeling, just relaxing in the beautiful Beaver's Bend area of SE Oklahoma. It will be like home to me, I grew up spending summers there with my grandmother. But, we will be staying in a huge two story rustic cabin, nestled in the thick woods and hills of that area. Probably overlooking the river.
I hope X is working on our MBC mets, I hope we keep having energy, I hope the HF clears up for all of you.💞
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Anyone had a cardiac stress test while on xeloda?
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I am wondering the same, on my 4th dose of 3600 mg/day and very nauseous and tired (although the first 3 days were ok). Am wondering if women are able to go to lower doses and different schedules. I am not sure I will last 2 weeks :-(
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Denny123 that gives me hope....2000mg a day every other week for 14 months? You go! I needed to read that today :-)
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I have an echo cardiogram scheduled for next week, because of my very swollen ankles and feet. I'm pretty confident that this isn't a heart problem, though.
Grannax, the boat trip keeps getting delayed. First the canvas bimini top wasn't ready, and now an engine "part", which was to have been delivered on Friday, installed, and ready for our departure tomorrow, hasn't yet appeared. I'm decidedly not good at waiting around.
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Diane, I have seen that some oncs dose Xeloda by the patient’s body mass, and some use a standard dose of 2500. But I think most will judge the appropriateness of the dose according to the severity of side effects. Unless you are a big lady, 3600 seems high. Keep your onc informed.
As for lotions, it is my belief that the purpose of them is to do what tends to keep the skin healthy, just as we might do if we were not on Xeloda. Healthy skin will handle the Xeloda better. It makes sense to me, Denny, that those three heavy-duty creams that dried out your skin would be counter-productive. Personally, I have avoided super-high urea content and using a urea cream every day, knowing that urea can bother sensitive skin, and have also avoided lotions with fragrance for the same reason. I just rinse my feet in cool water and moisturize at bedtime, rotating among three products. Not sure how much of the mildness of my hfs is due to luck, being careful with my hands and feet, my dose (2000), or the creams. I use O’Keefes Healthy Feet (urea), Everyone unscented lotion (coconut oil) and Shikai foot lotion.
SP (Coming up on two years Xeloda, apparently NED, crossing everything to continue)
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ShetlandPony - I am not a big lady, I am actually smallish :-). Congratulations on your wonderful run in remission, I hope it continues on and on. And thanks for the reply. I am hopeful I will have a good run on a lower dose, fingers crossed. I have a doc apt to discuss it
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Thanks Joyner! My echo came out great but am concerned about the treadmill.
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A question for all: I started X in early February or late Jan. Over the past 30 days, I have experienced very swollen ankles and feet. Would this seem to be related to the Xeloda, in your experience(s)? I had some minor swelling with Ibrance, too, primarily in one leg. I've had the Doppler and do not appear to have blood clot-related issues. I don't recall reading about swelling as a SE.
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Joyner, I have not had swollen ankles on X, buy t I'm only two weeks into TX. Sorry about the boat delays, hoping you'll be on the water soon. Let us know about your echo results.
.Shetland, that makes sense to me. I'm going to try your lotions. I already have coconut oil grand I love the smell. Two years ! I want to be you.
Hi, Gracie. Good luck on the stress test. .💞
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Well, now I need suggestions on how to keep the silicone footies on my feet! I put socks over them, but they still come off over night.
So last night I used gallon- sized freezer bags with socks over them. They did stay on, but gosh to the constant crackling every time I moved.
But my feet were still ointment-y when I got up. Also I used food service gloves on my hands after slathering them with Aquaphor.
Had a CT scan yesterday and will get the results in 2 days when I see my onc.
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Denny, I don't have an answer for you, but here is what I have https://www.amazon.com/gp/product/B07GH7LVMC/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
I have also bought silicone footies from swim outlets, but they seem to stretch after a time, I think from all the oils in the lotions. I h ad gotten something similar to this, but I didn't pay that much. I might have paid that much for 3 pair. https://www.amazon.com/Swimming-Footwear-Moulded-Silicone-Waterproof/dp/B01H0UIO9G
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Diane, I’m struggling too. I’m on 4600 mg 2 weeks on and 1 week off. Have an appointment with my onc today. I’m exhausted, unable to do the smallest things. My feet are fire red and walking is difficult. Hands are getting sore now too. I’m only on my second cycle and discouraged.
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Lynwood, do you mean 4600mg a day? That sounds really high based on the doses I've heard of on here. I'm on 2000mg a day. I'm also getting radiation right now, so my Onc might up the dose a bit after I'm done, but your dose sounds high to me. I'm sure the ladies on here with more experience on X will chime in with more useful info, but maybe you could talk to your onc about lowering your dose?
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Yikes, Lynnwood, that sounds like a huge dose to me. I'm at 3000/da. 7 on/7 off.
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Ann and Joyner, yes 4600 mg a day . It seemed like a high dose to me compared to what I see on here but I’m not a little thing. 5’10”” 255 lbs. I’m definitely going to ask for a dose reduction . I took Ibrance for 4 years like a champ with very tolerable side effects so this is a huge shock for me to feel so bad so quickly
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Lynnwood, let us know. Good luck.
I have just been diagnosed with a stage 0 melanoma on my anterior right thigh. I had the same thing 41 years ago (never returned) on my left thigh. Not so scary but another pain in the fanny surgery. Sick of shark bites!! And CANCER!!!
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Amarantha: How are you doing? Did you get any relief from the "Hindenburg Syndrome"? LOL The good news is, I DID! If you are still struggling with it, please, please, beg, plead, what ever you have to do, for your MO to order a paracetesis for you. Easiest procedure I had had in a long time and they removed 5 L of fluid from my abdomen! You will feel like a new woman! Please let me know how you're doing.
Cindy
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Thanks Goldie! I will have to check those out. Not crazy about the single toe thing, but the other ones look better than baggies!
Ouch Lynnwood! I would definitely ask for at least one week on, one week off. I am only on 2,000 a day and this stuff is not fun at all.
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Denny, just came from my appointment and she is lowering my dose from 4600mg daily to 4000mg daily and will probably lower again when I see her in 3 weeks. Today was my 13th day so she had me stop today. She said it can be difficult to find the right dose in the beginning. I’m quickly finding out that like you said, this stuff is no fun
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Lynnwood-glad that she is lowering it.
And YAY! I am still NED!! I saw my onc today and it is so nice to see a CT scan report that is so short and stating that there are no signs of mediastinal or hilar nodes. Started X 15 months ago, and I am only on 2,000 a day.
I ordered these-anything has to be better than baggies!
www.ebay.com/itm/Silicone-Moisturizing-Gel-Heel-Socks-Treatment-Cracked-Foot-Skin-Care-Protector/264096048024?var=563651914084
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GREAT news Denny!! Congratulations!!!
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Gosh! My alk phos is higher than its ever been! I’m really worried the xeloda isn’t working! Anybody else have any good news you can share with me about liver counts? I’m on one on, one off, and just finished my second week on
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That's great news, Denny! Congratulations!
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YAHOO, Denny!!!
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Denny, you are such an inspiration, so happy for you and your results. Those footies look good to use and not a lot of money. I put a picture of them here.
I've been using this cream. I was given it back in 08 when I started my initial treatments. During rads I had almost 3 degree burns and had to go to wound care. They tried 3 different creams on me and this was one of them. So I decided to try it on my feet. Like someone else had mentioned, I didn't like how the urea felt ther and this one is 10%. So I also mix it with some of my own lotion and it seems to be working pretty well.
Gracie, sorry I don't have any advice on the liver counts. Good luck to you. Having been on this thread for so long, I have seen many gals get good results on this med with the liver mets. So maybe give it a few more cycles and maybe they will go down.
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