All about Xeloda
Comments
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Hi Claudia,
Wine was one of my greatest pleasures in life. I do still have 1-2 glasses when out with friends or entertaining but limit it now that I have liver mets. Unless I'm out or having people over I generally don't feel much like drinking which I think is related to fatigue. My oncologist has said an occaisional glass of wine won't hurt me but there was one time when liver mets increased and I was about to start IV chemo that he said "No" If not for the liver mets I would be having more. I don't believe it is counterindicated with Xeloda.
Best wishes on your new treatment. Xeloda has been easier on me than my last chemo which was Taxotere.
Lisa
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Thanks for sharing your knowledge with me! I just like a small glass of wine when out with friends! Also, I started drinking Matcha Tea during my off week of Ibrance, because it is basically a stronger version of green tea which can't be consumed while on Ibrance. I found that I had lot more energy than before and my counts did not drop as low! Good stuff!
Hopefully I will get my Xeloda by tomorrow. Hi Dianarose, I'm so happy to see you doing well!
Hugs and prayers,
Claudia
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just checking in after my first 3 month scan on X. My multiple Liver mets are resolved on kne side of liver completely and other side has changed shape a bit. Bones all stable. Onc very happy to proceed. A relief to have a drug working. Hopefully I'll get dome time on this.
I was on 4300 which was so tough cycle too. Feet and hands peeled away and both sooooo sore. Reduced to 4000 (i know this is a lot! Im 11.7 stone and tall and slim) much better now.
Top tips. Crocs shoes are your friend. Too horrendous to wear in public but everyday around house and garden. Sketchers comfy trainer shoes outside. Nice shoes when needed. The crocs seem to message my feet and really help with the fluid that can build up. That and loads of moisturiser on hands and feet!
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Six years! Nice job. You'll have many more, I'm sure.
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Thank you all for the information here. I won't start Xeloda for another 6 weeks (still finishing radiation), but I read EVERYTHING here because I want to be informed and ready. I'm sure there are other lurkers like me who appreciate all that you share. See you again in July!
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CT scan Monday. Hoping the addition of Tykerb to the Xeloda is enough to keep m liver mets stable. Tumors had grown on Xeloda alone but the Celoda has kept my brain mets away. Hoping the two together work fir both my brain and live
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Leftfootforward, best wishes for a successful outcome with the meds combo.
Hi all, I hope you can help me with this conundrum...I spent a week in a cabin up on a mountain during my week off Xeloda after my initial first week. I'm on 3000mg.
while gardening I got a few insects bites, but now it's a few days since I've been back to the city, and I'm experiencing major hitching all over my body and little hard welts are appearing on my hands, around my feet and all over my body. I feel as if I'm reacting to something. As if I’m allergic to something....
Can this possibly be SE from Xeloda after only taking for one week?? Or is it just the insects bites showing up days later....
Thank you for your help...I hesitate calling my MO because ì'm afraid he might want to change MEDS. HELP!!
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Glad you had a nice break away..early on i got a full body rash. It looked like each pore on my legs went red. Even around my genital areas. I also got thrush...fun times! Rashs are side effrcts from drug but im also very susceptible to mosquito bites and more times than not they get infrcted and need an antibiotic. My X side effect rash did calm down on its own. The welts....if u mean pockets of fluid are also x. My second cycle was the worse. Skin on feet and hands peeled ecause of it. I got dose reduction which helped. Get it checked when u see your onc. The side effects were worth it to get a positive scan after 3 cycles
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thank you Lillymilly.....I guess I could put on the cream the dermatologist prescribed in anticipation of the hand and foot disease and see if it relieves the hitch...will report to the MO if it doesn’t subside...
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yes miaomix, keep as moisturized as possible. It may not turn unto anything as bad as i had. I was put on 4300 a day! Im in UK so doses are different. Hard not to get side effects on that much. It will definitey ease up!
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Hi Lillymille. I get a similar rash on my chest & one time on my legs. I used Children’s Benadryl Gel with great success. Good luck
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Hi everyone, I’m new to this board, starting a Xeloda & Navelbine in tablet form combo tomorrow.
I was diagnosed with bone mets from the start and we confirmed liver mets in January after hormone treatment stopped working. I’ve had a fairly easy run of it with Gemzar & cisplatin the past 6 months, but blood tests show I need to move on again.
Not looking forward to the Xeloda side effects I’ve read about, but if it works I’ll take them :-)
Expect me back with questions soon!
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Hello everyone, I am new but been lurking for awhile and learning a lot. On my 3rd round of X 3000 mg 2 weeks on 1 week off.My feet are killing me so looking forward to the week off. Scan tomorrow and onc on Friday.
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I tried a lot of different creams and have discovered that silicone glove sold by Avon seems to work the best
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thanks lester for the tip! Karz side effects ease up quickly. Im on high dose and only cycle 2 (now on 4) was bad. Im feeling very well and living life as normal (or as normal as i can be!)
Good luck with the scans and let us know Lnet. Ive said it before but crocs saved my feet. Not the ulgy clog ones but nice supported flip flops in house. So mich easier to walk in when soles are tender. Also bought a leather wedge croc sandal. Looks fab but gives me same comfort/relief!
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I am a 16 year survivor of Stage 4 MBC de novo, and have done tons of research. As far as wine, I would suggest that you Google Wine and BC and read what the cancer research institutes say about it.
No way would I chance it, but it is up to everyone.
I have also learned to watch green tea and similar teas since they are such a good antioxidant that they protect the cancer cells from the chemo. I learned that about 12 years ago while I was on Herceptin.
There is also research on whether to take vitamins around the time of infusion. So I don't take vitamins the day before, the day of, and the day after I get my Herceptin.
Denise
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Denny,
Thanks for posting this valuable info. I have read that wine might actually feed cancer because of all of the sugar in it, but I don’t remember where I saw it.
I’ve never seen the green tea issue, so very good to know.
Hope you continue to do well. You are an inspiration to many of us!
Lauri
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Dianarose,
I haven’t posted in awhile, but have been thinking of you and hoping you are doing okay. I wasn’t sure if you have already had surgery, but I’m praying for a good outcome.
Laurie
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booboo1...wine is also a good antioxidant. And that can protect the cancer cells too. As with everything, moderation is best.
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Booboo- I had my surgery but they did not get clean margins. MO is hoping the chemo takes care of the rest. I was bummed out. The ct scan report says the cancer is less in my belly but seven different spots in my bones lit up.Today I had a bone scan.i had a bad panic attack when they were scanning my head but got through it. I hate scans!!!Nervous what this scan will show. Tumor marker was still at 55 so we will see what the MO says in two weeks. Hopefully I will be staying on Xeloda.
How are you doing
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Hi Everyone,
I've been on Xeloda since August, with mixed results over the course over the 10 months. Initial 3 month scan was a mixed bag. Stable with some nodules, slight progression with some, and a few were smaller. Stayed the course, and next scan showed regression in lungs and primary tumour. MO called it a "slow, but impressive response" to treatment. Scan after that was mixed again, with similar results to my first post Xeloda scan, and just got results from most recent scan which again showed mixed results. Some nodules have progressed slightly. .5 mm maximum. Just wondering if anyone else has experienced similar sort of up and down response, and stayed on Xeloda.
I am finding this drug very manageable and would love to stay on it, as long as possible, but worried that since last two scans have shown some progression, that my run might be over. I'd like to give it at least another three months, but not at the risk of significant progression. Mets are still contained in lung only, and the largest node is 2 cm. My MO is really good, and not overly alarmist, which I appreciate, and I know he will have an educated, professional opinion when I see him tomorrow, but any feedback would be great.
Thanks,
Anna
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I don't like to comment much here as this site belongs to you ladies. Miss Monty your description of conditions is almost exactly like my wife. My wife's ER+ turned triple negative about 15 months ago. She's been on Xeloda since with numerous small mets to her spine. She's had the same up and down with her condition. She just had a PET scan yesterday and are nervously awaiting the results. She's gone through all the estrogen blockers like tamoxifen, al's etc. AC lifetime amount; no Taxol as she horribly allergic to it.
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I have lots of issues with the hand and foot problem on xeloda but the scan 3 months ago should improvement and my monthly checkups have continued to show improvement.
Anyone have a really good cream?
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Mike, this site/thread does not belong to "us ladies". You are more than welcome to post anytime. Hoping your wife can find something else to try.
Monty, I haven't had scans in over 18 months. Mainly because I don't experience any symptoms from cancer (I refuse to refer to it as "MY" cancer). I want to squeeze whatever I can out of X. Mets for me are only in the bones, no organs (yet). I say to be your own advocate, if you want to stay on in it longer, then do so. Does your onc say what the next treatment will be, if you do go off X. Mine tells me Ibrance would be next then IV chemo, most likely Taxol. Which at that point, I may refuse.
Proud, creams for me only help in the moment. Once it's absorbed, they go back to the dry, cracked and peeling. I get longer relief if I put on some latex gloves. I do like using coconut oil or Vaseline.
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Goldie, thanks for your thought, i do wear socks and white gloves at night and trying to wear a light compression glove during the day. Gonna dry the coconut oil, my manicurist actually suggestec that,
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Dianarose,
I had a PET scan last Friday, and found out on Wed. that Xeloda is working for me. You have no idea how happy I was to hear it. Every drug except Taxol failed me, so it's a relief to find one that works! My Onc said that many of the lesions were undetectable on this scan, and all of the lesions have shrunk in size. So I am one happy camper....but my heart still goes out to those of you who may not be getting such good news. My heart broke when I read about your recent setback. But you know what? Chin up. It's just another hurdle that you will overcome. We are fighters. We have to be to fight this monster. But rest assured we are a mighty army of women who fight together! Let me know if I can support you in any way
Laurie
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Mike...please post and contribute. I don't post often, but read a lot, and our friends here are truly amazing, I'm encouraged and inspired every day. Appreciate your comments. The up and down is so frustrating, as I'm sure you and your wife feel as well, but I guess it's better than significant profession. Crossing my fingers for positive results from your wife's recent scan. Once I've met with my MO, tomorrow, I will post on my plan.
Goldie, thanks for you feedback. I follow your posts and am so encouraged by your long term success with Xeloda. I too, don't have any symptoms from the cancer, and pretty limited side effects from the drug. I will discuss the pros/cons of staying on Xeloda (hopefully more pros than cons) and go from there. Wants to squeeze as much out of it as I can, and I think if I want to give it a few more cycles, my MO would be on side. Next treatment will likely be Kisqali. I'm just worried with only one hormone receptor it may not be effective for me. I suspect Taxol would be next after that, which like you, I don't have much of an appetite for. Anyways, will have a better idea of a go forward plan tomorrow. Will advise how it goes.
Anna
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Anna, I think we are in the similar situation, my cousin has been on xeloda together with Femarafor less than a year, CA153 was dropping until the last test, CEA has been increasing slowly for 6 months. Scan shows stable. We will talk to MO next Tue, but we are also ER+ only (PR-). I’m very worried whether the next one would be effective.
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Good morning all! Iowa I was so happy to get off of ibrance and letrozole. I just wanted to get off of the hormone receptors and try to see what it would be like without them. I have been having slow but steady progression on ibrance for a year now and felt like it was time finally to move on. My Xeloda finally came in the mail yesterday and rather than being all excited, I was terrified. I got up this morning and ate my breakfast and sat here for a good 15 minutes just staring at the bottle. I think all of you can understand that feeling of going from one treatment to the next and wondering what side effects the next one is going to have. Whether they are going to be tolerable or not tolerable, are they going to be worse than the side effects on the previous treatment, or are they going to be better. All questions we wrestle with every time we change treatments.
So I finally got up the nerve to take the three pills, you would have thought I was taking poison. I was so hesitant it really surprised me. Anyway, first dose down now will move on and see what happens from here. I have my urea cream I have my bag balm I'm on my way to the store today to pick up socks and gloves. It seems that most everyone suffers from the h&f syndrome.
I was wondering, does the heat affect the side effects of the medicine and anyway? We are having a huge Heat Wave here where it's in the high 90s every day and with the heat index we have been 105 and over everyday. I've been trying to stay in the house as much as possible, but it's kind of hard to do when you have horses and dogs. I read that you're supposed to really use a lot of sunscreen when you go outside, so I'm prepared for that, however I'm a little concerned about it at the same time because let's face it I live in the sunniest state supposedly. Anyway, it looks like this heat wave is here to stay at least through the weekend, so I guess I'll just have to suck it up. I can't believe how bad it is and it's only June! We usually don't have this kind of weather until July or later. Anyway, any other tips or advice from you would be appreciated!
Hugs and prayers,
Claudia
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Boo, that is great news. I have been on X for 3 years, and LeftFoot is 5 years. And YES, we need to support one another.
MissM, hoping you get a long run with the Madame as well.
Kid, wishing the same for you.
Big, my SE's from X are different now than when I first started. The fatigue is not nearly as bad now ncompared to how it was in the beginning. My worst is the HFS. I find I can tolerate my 2 morning pills without eating, but usually end up eating something maybe a half hour or so after, but not always. Then 3 pills in the evening with dinner. I can't tolerate any more than 5 pills. I have the same fear as you, when having to switch to Ibrance. When I do, and if it doesn't work, I' m going to ask if I can try X again. As for the heat, I think it's more exposure to the sun, as opposed to the heat. Hot water on the hands and feet can be painful. I take warm showers and always wear gloves to do dishes or gardening. We too have had some hot days, 108 yesterday and I'm at an elevation of 6000'!
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