All about Xeloda
Comments
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@anx789… It's possible that your voice problems are the result of your Kisqali. If you change to Xeloda, it may clear up, I hope.
I have CT scans every 3-4 months with oral contrast (yucky Barium).
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It pass quite a bit, as every oncologist had a different opinion.
At first one suggested Docetaxel, than another one say it was not ok, anoter told me eve+exe, another cycline, but most suggested capecitabina so i opted for that. But than before i had to do a test i was not allergic to it, and took one week for results. So it passed a month or so... I was scared of the delay but they told a pause in between medicines was actually allright for my body recovery.
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What kind of test is it ? Is it mandatory in Europe? i just stopped Kisqali yesterday and my MO wants me start Xeloda on Monday, I feel its a little too soon.
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The test i believe was to search for DPYD, if you have that mutations, the risk you will have toxicity from Xeloda is higher. But I think is a rare mutation, and I'm not sure in USA is a mendatory test. It is mendatory here in Italy. I did it just because I had to, but if was just me, I was so in a hurry to start a treatment, I wouldnt even do it...
Did you do any genomic test or biopsy to see if you have any mutations for different medicines? I unfortunately didn't have any, just a crazy high TYMP, like never recorded before in a lab (over 10000! Kind of scary!), but related to success using capecitabina.
I don't remember if you mentioned something about that...
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UDDERLY SMOOTH CREAM works for my dry skin
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Just completed my first 2 weeks on capecitabine 3g daily, in divided doses. I’m also on high strength prednisone for pneumonitis. No nausea/diarrhea or hand-foot problems. The Voltaren/diclofenac gel twice a day seems to be working along with Eucerin or Nivea creams (not lotions)! As a retired pharmacist, I also like Cetaphil and Cerave.
However, I’m going to ask for a dose reduction due to a persistent tongue lesion which showed up a fortnight ago. Initially, thinking it was a canker sore, I realized those don’t appear very often for me. When one does occur, it will heal in a couple days. This time it got worse to the point of affecting my speech and ability to eat. Salt water rinses only help a little.
The anemia I had previously seems to be improving. At the beginning of the year, my hemoglobin dropped to 8.2 and I was offered a blood transfusion. I’m now less winded with exertion and have more energy although that might be because of the steroid which is on a taper. I hope to get a longer run on Xeloda compared to my several recent treatments…
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@vinrph This is a timely post since I am also dealing with a sore on my tongue that has been there for 2 weeks. It is healing very slowly, but I am really tired of dealing with it. I mainly use Chloraseptic sore throat spray and lozenges.
I have been on Xeloda for over 6 years, and also on Herceptin (for over 20 years). But I don't know what is causing it besides the fact that it started after I ate some pecans.
I have an old script from my dentist for Magic Mouthwash, but Walmart pharmacy is unable to fill it since it requires a sterile place for mixing??? I'm going to ask my onc for a new script and will try to find a pharmacy to fill it for me.
But I know that it only numbs the pain.
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I started Xeloda a month ago, I’m on 7/7. This week is my third week, how long does it takes for Xeloda work? I don’t have diarrhea or constipation but I start having lots of gas and a little stomach upset.
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2anx789…I don't know how long it takes to work, but it has helped me to stay NED for over 6 years (along with Herceptin).
I take Famotadine for mild nausea, which is Pepcid 40(via a script). You can get Pepcid 20 OTC. I also like Emetrol syrup which is also OTC.
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I was able to get Magic Mouthwash since my chemo center sent a script electronically. My nurse told me that Lidocaine is scarce now. So it isn't included in the formulary.
I had written before about the fact that I get the shakes during my Herceptin IV. Well, they were really bad yesterday and I think that I have figured it out. I took Claritin on an empty stomach (since I had to get fasting bloodwork), before I left my house. I started to get the shakes as soon as I got into the chemo chair. And they got really bad.
So I will not take an antihistamine the next time before my treatment as instructed, and see if it helps.
Denise
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Chest CT last Friday showed much lung improvement due to the high dose prednisone. Such a relief to know the pneumonitis will not progress to pulmonary fibrosis which is incurable. Although I saw my dentist earlier in the week to have a crown recemented (it had popped off during extraction of the neighboring tooth at the beginning of the month) the only suggestion given was to use Magic Mouthwash for the tongue sore.
During my career as a pharmacist, those prescriptions were always a problem to get through insurance because our time to concoct them was never compensated adequately. They certainly did not to be mixed in a sterile area. However, ingredients and amounts differed (no standard formula), some specified swish & swallow while most should be spit out. Apparently, since I retired, compounding kits are now available.
However, my oncologist recognized oral thrush, a yeast infection which I suspected but couldn’t really see many white patches. Taking steroids contributes to overgrowth. Getting an Rx for nystatin, an anti-fungal suspension, and using a teaspoonful every 6 hours began to clear things up. I can now eat normally, instead of soft food in tiny bites. Starting 1500mg am, 1g pm capecitabine=cycle 2 this evening if my delivery arrives!
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vlnrph, so glad your scan showed lung improvement. Do you feel better? Do you have any further thoughts about taking Xeloda?
I had a ct and bone scan two weeks ago. These were the first scans since being in the hospital for the femoral rod surgery last October. The ct scan showed an increase in the right paratracheal lymph node which was .3 cm on last scan and was 1.1 cm on this scan. My oncologist said she is not concerned about it but that I could scan again in two months rather than the four months I’ve been scanning, so that’s what I’ll do. The rest of the scans show no change other than taking into account the recent surgery on my leg.
I’m not one to get all woo-woo but I’ve been sleeping on my right side or stomach for four months because of the rod placement in my left leg, but I just read an article saying that sleeping on your left side is beneficial in many ways including helping lymph node drainage. I cannot say how much science backs those claims but who knows? I’m going to try sleeping a bit more on my left side now that my leg has healed some and see if that has any reverse affect on the lymph node before the next scan. Sure can’t hurt!1 -
@vlnrph Thanks! Wamart gave me a bottle of lidocaine (which has been on back-order a long time), and I had to buy Mylanta and liquid Benadryl. So I need to use equal parts of each when I use it.
No idea why the pharmacist said that it had to be in a sterile enviroment.
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Day 9 of second 14/7 cycle, Lucky to have none of the worse SEs (assiduous with hand/foot moisturisers) and feeling generally less poisoned than with verzenio/letrozole but soooooo very sleepy. I can function maybe 2 or 3 hours at normal work rate and then have to sleep or at least rest for an hour. Is this normal? Terrified of being sacked by generally sympathetic employer. Equally longing to win big on the lottery and just snooze in more exotic climes.
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Emilia, when undergoing my 1st round of chemotherapy in 2011, my oncologist mentioned that the controlled substance known as Provigil (modafinil) could be helpful if I went back to work before the 4 planned cycles were completed & felt especially fatigued. As a pharmacist, I found that interesting but simply took the time off.
Have you asked your doctor about your symptoms? Perhaps a dose reduction or going to the 7/7 schedule might help you. In addition, I apply Voltaren=diclofenac gel to palms and soles twice a day, as announced when a clinical study report in summer 2022 recommended that treatment.
With my refill of Xeloda at a lower amount, 3 tablets am & 2 pm, it seems to be going OK. I continue the prednisone taper, now at just 30mg daily, half of what I started with in late January. Two months to go then everything gets scanned - bones, lungs, liver. Hopefully, I get a nice long run on this. Five regimens in less than a year is way too many…
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Thanks Vlnrph, I’m seeing the oncologist next week and will ask. Also another MRI of brain to look forward to, just in case. Apart from the desire to sleep all the time, it’s so much more tolerable (for me) than first line. I’ll try the diclofenac but so far only one inch or so of redness on one palm.
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Just a reminder that most of us find relief from hand and foot problems when we reduce the amount of foods ingested that are high in folic acid.
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Denny, thanks for that message again. With all that goes on when starting a new regimen, it can be difficult to keep track of everything! Many foods are “enriched” by adding folate because it’s important during pregnancy. I stopped my adult multivitamin/mineral product. My oncologist thought it was OK to substitute a children’s version.
Those tiny gummies are delicious. I only eat one each day usually with supper, pretending I’m a toddler. At least there are minimal amounts of necessary nutrients in them. I wasn’t eating much because of the discomfort from stomatitis. Also, keep in mind that Xeloda breaks down into 5FU (fluorouracil) which is responsible for many of the side effects.
Since spring & warm weather seem to be coming for many of us, be careful regarding sun exposure while on capecitabine. My fingertips now have peeling skin except on ring & pinky. I’m getting accustomed to putting on rubber gloves for kitchen work, cleaning, and even transferring wet laundry into the dryer. Never wore them previously.
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@vlnrph I am glad that you are being careful. I wasn't too bad at first, but I have been on Xeloda for over 6 years now. Voltaren should help a bit with hand and foot pain, but it won't prevent the nasty fingernail and toenail infections.
I had taken vitamins all of my life, but my onc insists that I don't really need vitamins. I have my cmp bloodwork done every 6 months so my levels are constantly being monitored.
I wear vinyl gloves outside for yardwork, especially since I have bilateral lymphedema. But if you experience excessive sweating with the gloves, you might want to consider the thinner food service gloves on occasion. I wear those every night with Aquaphor to keep my hands moist.
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Hello, anybody here had Xeloda and Taxol at the same time. Xeloda is not working, my Onco wants to add Taxol.
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I am on Xeloda and Herceptin. But Taxol would probably do a good job.
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Hello! I have left the Ibrance and Faslodex threads and now am hopping into the Xeloda threads. I got about a year from the Ibrance/Faslodex combo. So I would be starting Xeloda on April 15th. My cycle will be 7 on and 7 off. In the beginning of Ibrance/Faslodex I had fatigue. But after a few months I felt back to normal. I am concerned about the hand/food issues with Xeloda. Any helpful tips would be appreciated.
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@luvdbyhim I’m in the same position. Had to stop Verzenio and Letrazole after a little over a year because of liver progression. I’ll be starting Xeloda and Faslodex. I’m nervous and bummed to have to start another treatment. Also interested in helpful tips.
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@luvdbyhim and @AJ I’m no longer on Xeloda, but when I first started it, I was very emotional for the first few months. I kept telling my husband to be patient because I had no control over the tears. It did level out. Also, have either of you had a blood biopsy to see if you have the PIK3 or ESR1 mutation? Helpful things are to watch your folic intake. The more you have, the worse the hand and foot can be. I also used 20% urea on my hands and feet. I’m sure others will also have helpful tips.
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@kbl - Were you emotional because of a change in meds or was it a side effect of the meds? Good to know about the folic intake. I do have an ESR1 mutation. Blood biopsy came back yesterday. My thought process was about doing Xeloda, I was on Anastrazole for 7 years, then found out I was Stage 4, went on Ibrance/Faslodex and after a year that failed. I am ER/PR + Her2 low, and just a little concerned it may flip. I am thinking maybe we should give that pathway a break for a little while and try something new.
@AJ - Sorry you have to change! I feel the same way, I guess its fear of the unknown? When I started Ibrance and Faslodex I was tired. Fatigued was more like it. First three cycles were every two weeks then it went to every 4 weeks. I think it was about 4 - 5 months in I felt like my old self again. No fatigue. I know its going to sound crazy but I really think where the nurses gave the shots for the faslodex had something to do with my fatigue. I believe keep walking around after the shots. Sitting on them I think made me more tired! I found a few nurses that didn't leave those bumps so I would request them all the time. They also would hit me up higher like closer to the hips and not down so far that I when I would sit I would be sitting on injection sites. Does that make sense?
It is quite exhausting to explain to extended family members and friends why I am changing medicine. My mother and my mother in law called every day after the blood biopsy to see if it came back. It was 9days. They put way more importance on it then I did. I try to give them the 5 grader version instead of the scientific/doctor version.
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@luvdbyhim , my tumor testing was negative for PIK3 but not tested for ESRI. My oncologist said that testing for that wouldn’t change the treatment because we need something that works on brain mets. I get my first Faslodex shots tomorrow. Hope the nurse knows what he or she knows what they’re doing!
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@luvdbyhim It was a side effect. It got better a few months later. This time, when I started Orserdu, instead of crying, I had what I call a snippy attitude. That also lasted a few months and is much better. I am not telling you what to do at all, but knowing what I know now, I would choose the Orserdu first before Xeloda, just because of the hand and foot issues and it’s chemo. Also, Orserdu does have a clinical trial with a CDK7 that you might want to look at. I can’t do it because I had already started on the med. There is an Orserdu Facebook group. There are some who have been on it a year. I’m almost done with my sixth month. Some it doesn’t work for. It’s worked for me as far as I know. I’m not scanning, but the tumor markers are down, and I’m able to eat, which is big for me, since I have mets in my stomach.
@AJ, I’m sorry you don’t have an opportunity for Orserdu because of the brain mets.
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