All about Xeloda
Comments
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My primary gave me some Prozac, and I mentioned it to my onc, he said no problem. But I have not taken them.
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I started Xeloda 2 weeks on and one week off 1500 mg. 2 x day - had blisters on my feet and hands and my fingers turned blue (like bright blue!) - so they lowered the dose to 1000 mg 2 x day one week on and one week off - it was keeping bone mets stable but not working for liver mets so they increased the dose back up to 1500 mg. 2 x a day but on the one week on and one week off schedule and I have had no problems with this regimen. I wish I had known so I could have maintained a more effective dose from the beginning. It is my understanding that X reaches its maximum effectiveness at 7 days so this schedule is just as effective (if not more) than the 2 week on, 1 week off schedule. They did take me off altogether until the initial side effects went away. Don't know how this new dose is working yet - scan in a month. Susie
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Apack, I hope that regimen works for you and good luck with the scans. My first cycle, onc had me on 3500 mg a day, 4 pills in the morning and 3 at night. 2 weeks on and one week off. I thought I was going to die, and was ready to quit all together. I do have hand/foot and I got a terrible rash, which is still trying to clear up. Have not heard of blue fingers, I hope you blood counts are ok. I am now on 2000 mg a day, 2/2 pills and still 2 weeks on and 1 week off. I wonder what makes doctors decide whether or not 2 weeks on and 1 off, vs. 1 week on and 1 week off. I would much prefer that schedule!!! Oh, and labs every 3 weeks, which seams a bit extreme to me, going to ask if we can just do them every 6 weeks, which I have to see onc that often.
How often are any of you seeing your onc and having labs drawn?
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My wife had blood work and oncologist checkup done every 4 weeks for the first 9 months of Xeloda; then they lengthened both to every 6 weeks three months ago.
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Thanks Giovanni, I just finished my 3rd cycle, so maybe onc will change things after I have been on it for awhile. I sure hope so!
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Hi Goldie - I have done labs every 4 weeks - every three seems a lot but there may be special circumstances with your blood work that they want to check more often. I think they are checking the kidneys with Xeloda, especially if they are adding the Zometa infusion - both are excreted by the kidneys and can potentially do damage. I hate this part of picking which area of the rest of you do you want to damage while killing the cancer. I read quite a bit about Xeloda scheduling (I think on the Sloane Kettering site) and they said many want to stick with the way the study was done, but many others are finding the one, one schedule just as effective. Who knows? sometimes I think it is all a big game of pick up sticks!
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hello everyone! I have some questions about how I have been feeling on Xeloda. I am on cycle 4 of 14/7 cycle 3000 mg a day. . I am feeling fatigue and and almost flu like feeling. Staying awake in the afternoon is a joke and I honestly don't know if it's because of chemo or because I take a motrin and Norco in the morning, however norco never made me tired before. The flu like feelings is messing with my appitite . I do however at night kinda perk up and therefore makes it hard to get to sleep. lol. i am a mess. Have Tumors on sternum, spot on my lung and many, many diseased nodes.any advise would be appreciate. Also, anyone else have multiple node involvement??Thank you Kate
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I was seeing my oncologist every 3 weeks (had for over 2 years). I just graduated to seeing her every 6 weeks. Every time I see her labs are drawn and checked. I also just graduated to getting CTs and brain MRI's ever 4-6 months instead of every 3. I had been doing that regimen for the past 2 years.
I think doctors orignally perscribe Xeloda based on your weight and the standard 14 on 7 off schedule. They then adjust as needed to help with side effects. That is why everyone seems to have different doses and different schedules. If you think you would prefer a different schedule, then ask. All they can say is no. And ask them for a reason. Then you can understand or try to understand why they have made the decision.
I was orignally on the 4 pills in teh morning and 3 pills at night 14 on 7 off regimen. Had a horrible rash the first 4 cycles. Hand and foot eventually got bad enough that I had to take a 2 week rest period. We lowered my dose to 3 pills twice a day 14 on 7 off. I have been doing great on that for about 2 years. I will admit that I have a lot of fatigue and my hand and feet are sensitive but I can't complain. Day 10 and 11 suck for me and then I bounce back a little. By my 3rd day off until about day 7 I feel pretty good. AFter 2 years, I have figured it out mostly. Sometimes something changes. I hope for all of you that once you have the right dose and right schedule, you will feel pretty well
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I guess I just need to hang in there and hope to graduate to visits and labs being further apart after I am on the drug for awhile. I really like my 2/2 pills, and the rash was horrible. Mostly on my chest and back, but it was starting to show up on my limbs and my face. And itch like cray cray and of course not healing at all, due to low immune. LFF, you took 7 pills for 4 cycles? I was done after the first one! No way, I wasn't going to do it. I think our kidneys and liver are compromised with X.
Apackoftwo, I am not on the Zometa, is that another form of chemo? A game of pickup sticks indeed!
Kate, I had 2 nodes positive, but that was all the idiot surgeon removed.
I'm finding that bag balm helps the most with the H/F syndrome, but my neighbor let me try some calendula cream, I think it is good do and I happed to have some growing in my garden. So need to do a little more research on that.
Here are pics of my rash, I'm quite freckled, so hard to tell how bad it was. Oh, and my bottom lip was terribly blistered.
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Goldie0827,
Zometa is a type of bisphosphonate drug for osteoporosis that has shown to work well hand in hand with bone mets to repair the bones. In other words it helps repair the bone microfractures caused by the metastases.
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I so remember that rash. It was terrible. I hope that it will go away for you like it did for me. It was miserable. Wishing for the best.
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After 17 months, Xeloda is no longer working. I met with my MO today and I will be getting Abraxane every 3 weeks. Wish you all long runs on Xeloda.
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Sorry to hear that Hansaim - hugs and good luck with Abraxane x
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Am writing on behalf of my 81-year-old mother, who was diagnosed in Sept 2012 with Stage IV breast cancer with metastasis to the bones and lungs. In 2000 she had estrogen sensative breast cancer in her left breast with lumpectomy, radiation, and 5 years of oral Tamoxifen with no reoccurrence until now. Her breast cancer is once again estrogen sensitive, so this time she received oral anastrazole to block estrogen and was stable for about 1 1/2 years until her PET scan showed increased activity, then she went to Faslodex injections, again to block estrogen, for about 4 months. The next PET showed spread to the liver and lymph nodes in the neck and shoulder blades, so now she's on oral Exemestane, another estrogen blocker. If this doesn't work, she has one more oral to try, Tamoxifen, the same ne that killed the cancer the first time. Her oncologist is hoping that, this long after the original doses, that the cancer will have "forgotten" Tamoxifen and it may work again. After that, her only option is chemo. She is adamant that she doesn't want to lose her hair, and will refuse chemo based on that. She knows about wigs, and that the hair loss is temporary, but hair loss, even temporary, is her line in the sand. I have read that with Xeloda, especially with a 7 on 7 off dosing schedule, that hair loss might not happen. Please let me know what your experiences have been regarding hair loss on Xeloda, and please forgive me if this was already discussed somewhere deep in this forum's past.
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Hi Fingerscrossed - Xeloda hasn't made me loose any hair. I'm on a reasonably high dose (3600mgs daily) on a 2 week on, one week off schedule.
All the best for your mum and you x
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Fingerscrossed, I've been taking Xeloda for over 1 1/2 years and have had no hair loss.
Kessala
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Fingers, No hair loss here either, except in my nose and some on my eyelashes. God Bless your mom for having to go through this at her age. And at her age, I would refuse chemo too. In fact, I think I would refuse it now. I feel if it's that bad, chemo is not going to give me much time. I know Xeloda is a chemo, but I'm referring to chemo infusions.
Doris, how the heck do you manage that large of a dose? My first cycle was 3500, I couldn't handle it. Good thing my onc lowered it, or I was DONE.
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Hey Goldie
Am having the dose reduced today to 3000mgs; think they wanted to get a jump on the tumours as I'd only been off femara for 4 weeks before they were confirmed as mets. So I've had 3 cycles of the 'stong' dose and am going to a strength which should be easier to live with. But, they are stable so I can't complain and the side effects are much more do-able than the FEC-D IV stuff I had last time.
I also hate having more hair on my top lip than in my nose!
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All of your responses about the lack of hair loss with Xeloda sound encouraging. I know the other side effects are also tough to get through, and my mom may turn down Xeloda for those reasons, but the idea of probably retaining her hair makes this the most appealing of the drugs she would be offered if her estrogen blockers fail her. Thank you so much for your feedback and for participating in this forum! As I have time, am going to go through each and every response from the beginning of the forum to become as informed as I can about this medication, pro and con.
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fingerscrossed,
My MO told me she has a 92 year old patient on Xeloda who is doing fine. Your Mom is a youngster compared to that! I haven't heard of anyone losing their hair on Xeloda. Love it that she still cares about her hair at 81! She's lucky to have such a caring daughter.
Hugs, Susan
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Hi Ladies
I was org dx dec '13 with mets to bones. Found out on Nov met to liver. Had RFA for that met then found out a month later 3 more mets showed up in liver. In Feb I started X and I found out on Friday that all of the liver mets are so small they're barely visible. This is my 4 line of treatment and knowing that X is working gave me hope again. I want this chemo to work for years to come especially since the side effects are subsiding a li
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Hello everyone,
Currently my wife just completed her first round of Xeloda; 14/7. The side effects are alarming. She's experienced severe dizziness, loss of appetite and extreme fatigue. Anyone else had this experience
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Heya LuvnNikki
The fatigue and loss of appetite sound 'normal' but not so sure about the dizziness; do you have a nurse at the cancer centre you can check in with? Small meals may help, and sometimes the tastebuds are affected so what used to be favourite foods become a turn off .
Hugs to you both x
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Hi All : My tumor markers are steadily going down so far. I do have terrible joint pain in my fingers. Yesterday my knee and foot prevented me from being able to walk. My foot felt like it was broken in half, and the pain right behind my knee,kept me from bending my leg. I took a couple of oxys and I was able to get out of bed, walk and soak in an Epsom salt bath today. I'm only at about 95% ,but 100% compared to yesterday.
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LuvnNikki : What strength is she taking ? Thanks to this thread, I went in telling my Oncologist that I wanted 7 on and 7 off, 3,000mgs. And that's what he gave me.
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Thank you for your response Mscal02.
She takes 3 pills in the morning and 2 pills in the evening; 2500mg total.
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Thank you for your response Blondeddoris. Yes, I actually have a couple on speed dial. I will check in with them. I was trying to get her to go to the ER but she isn't willing. I want to make sure she's ok and this is only side effect related and nothing more. We have a bone scan scheduled for Friday and brain scan for Sunday to ensure it isn't progression
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Sorry for the ick factor of this question, but am wondering if any of you have experienced a leaking toe? My mom's been on Xeloda for just over a year and along with redness and some peeling, which has just started in the last few cycles, she now also has some liquid oozing from under her big toenail. It's not blood, just a clear liquid. Anyone else have this?
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I'm 100% sure it's part of the HFS (hand foot syndrome) side effect: prematurely dying skin cells causing infection and the oozing would be immune-system cells coming to fight the infection. My two-cent advice is to increase the care of your feet to limit the HFS, and use a proven remedy. I'm biased for uridine cream, because I've been preparing at home for my wife for 9 months now, and obtaining good results. Above all do not go to a dermatologist who would probably be ignorant about Xeloda-induced HFS, and prescribe counterproductive lotions.
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yes I suffered from this on both my big toes. After suffering for way to long I went and saw a pediatrist. He treated me as if I had ingrown toenails. It worked. My toes have been great ever since. What was happening is my toes were getting swollen and red due to the Xeloda. This had the same effect as having an ingrown toe nail. I hadn't thought about that. I have ugly big toe nails now but pain and infection free. I would recommend seeing a pediatrist. Can't hurt.
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