All about Xeloda
Comments
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Miaowmix, so encouraging to see new treatments coming down the pipeline. I especially like the no evidence of toxicity.
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Denny, do you rub it along the cuticle area? How often?
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amarantha said:"I'm already dealing with yucky fatigue from previous treatments and my hair is still falling out from my last infusion of Halaven last month)".
Hello. My sister is moving on from Xeloda after almost 6 years. Halaven is her next treatment. What can you tell about it? Thanks so much.
Mark J.0 -
Just thought I would give an update on how I am doing on my first cycle of Xeloda. I am on day nine and so far no s/e at all. Can get a bit tired if I over do it, but have felt that way since finishing chemo and radiation anyway. Feel that I have been fortunate so far, and sure that it can't last. I am on 200 x 2 14/7. How are others doing
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Hi, this is my third dance with Madame X. First was during neoadjuvant chemo CT treatments. After 3 out of 6 CTs. Onc added X to my treatment plan with 2 weeks on one off 3000mg per day. I hardly could stan up, and I cried to Onc to reduce the dosage, because I know that much then that the X SEs correspond with dosage. She reduced to 2000 per day, I was able to finish with CT treatments with X. After surgery, X was back during my radiation treatments. At that time, I never could understand why Onc used stage 4 drug X for a newly discovered breast cancer. That was 8.5 years ago.
Recently, after I almost run out hormonal drugs and expressly refused AA treatment plan and IV chemo, Onc agreed to put me back on X. This time, she allows me to 7/7 and starting on 2000 ( 2x2) per day. She also allows me to increase dosage wheneveras I can tolerate the SEs. During the last 6 months, I have increased from 2x2, 2x3, 3x3, to 3x4, and will top at 4x4 pretty soon. I have not developed HFS yet, and nausea and fatigue have not bothered me either. From my experiences, l like the increase dosage plan. Of corse, the medical effect is to be determined.
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Miaow-thanks so much for posting that article!!!!!!
Goldie-I dip a Q-Tip into the oil, and spread it on my cuticles, and at the top edge too. So maybe it can get under the nails. I do that to all of my toenails about every 4 hours...when I put on new Aquaphor or Ammmonium Lactate.
So far, I still haven't had the inflamed and dark red toenails and the ends of the toes for about 3 weeks!!! I am going to do the foot icing after taking my pills, as suggested in a previous post. Sounds like it might work, I hope.
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Cling, when you note this dosage: "2x2, 2x3, 3x3, to 3x4, and will top at 4x4 pretty soon", do you mean that you started at 2x2 (2 x 500 mg) which is 1000 mg twice daily for a total of 2000 mg/day (7 da on and 7 da off) and plan to top out at 4x4 (4 x 500 mg) which would be 2000 mg, 4 times per day, for a total of 8000 mg daily, 7 on and 7 off? That seems like a very high dosage, so I may be mis-reading your note. Thanks!
I've been on X since January (1500 mg twice daily) 7 on and 7 off. So far, so good for me. Minimal SE. Have no idea whether it's working on not. PET scan this Monday, the 8th, with reading on the 18th(!!). Too long to wait.
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I have been on 2500/day since about August 1 week on/ 1 week off. My markers & petscan showed regression in November, and the markers kept going down. In February they went up 1 point, and I just had another petscan done/ markers run. In February & March, I got illnesses twice which made me have to delay things for a week. So, I was really nervous before the most recent tests. They do show progression with the tumors getting bigger & brighter but thankfully no new tumors. Because of the delays, we are going to try a higher dose (alternating 2500 one day/ 3000 the next) for a month & recheck markers. We aren't going fully to 3000 b/c I have a lot of stomach issues on 2500 as it is. Has anyone else had success with a higher dose when a lower one stopped working or had a problem? Options after this are infused chemo, & I still work full time so I'd like to delay that as much as I can.
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JoynerL, sorry it is my mistake, I should say the dosage as starting 2 pills(500mg each, total 2000 mg per day)2 in the morning and 2 in the evening, then increase to 2 for am and 3 for pm, 3 for am 3 for pm, 3 for am 4 for pm and top at 4 for am and 4 for pm (4000mg per day). Onc allows me to increase 500 mg dosage (or decrease) at my own pace as I can tolerate the SEs. Fortunately, the SEs have not bothered me yet.
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Denny123 --- I see a lot of long survival stories from bone mets, not so much from liver. My recently diagnosed MET, along with MBC DX, is liver. How well have you been coping? Right now -- I am just frozen in shock. I get my port implant on Tuesday, March 9 and I guess chemo follows shortly. I am trying to be optomistic that I have a few good years ahead of me.
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Hi to all! Just found out last night that Xeloda will be my next treatment. Have had been stable on Ibrance/ Letrazole for 4 years for bone mets. Progression just found on pet scan, still only in bones. Onc will be calculating dosage and setting things up. Says I will have to see her weekly after starting, is this normal? Been reading here about the hand and foot syndrome, one of my friends had it so I am familiar. Anything else I need to know please chime in. Fatigue? Diarrhea? Nausea? Thanks in advance, I’ve found that the best tips come not from doctors but from patients.
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Lynnwood....Congratulations on your four years long successful record on I/L ....that's amazing!
People react in different ways to xeloda due to dosage and frequency. After many months, I'm now starting to suffer from skin drying out and peeling off my fingers. I also lost my fingerprints along the way....
Hopefully, you will be told to take it every other week. This schedule will give your body time to recover from the damages. However, they are cumulative. Primarily, Xeloda seems to remove liquids from our bodies, which manifests in dry, cracked skin. I also suffer from fatigue but not as much as from when I was taking the hormonals. No nausea or diarrhea...maybe increased appetite. I have gained weight as it needs to be taken after a meal, every 12 hours, which in my case has lead to overeating.
So welcome and may you get many years of benefits from this drug...I personally love it more than anything else I've been on.
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Lynnwood1960 This is my first round of Xeloda (day11) and so far no s/e. Not saying that it will stay that way as I understand it builds, but maybe not. I found that I got more worked up about getting side effects than actually taking the pills. I have taken on board lots of advice that I have picked up from this site, maybe it has helped. Always take on a full stomach, use mouthwash after cleaning teeth, moisturise hands and feet. Hope it goes well for you. I do not have weekly checks, just blood test and nurse consultation every three weeks (I am in UK
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@Lynn1: I really believe that icing my feet 45-90 minutes after taking Xeloda for about an hour, both times a day, is the difference between my being able to tolerate Xeloda (and be able to walk) versus not tolerate Xeloda. This icing method is based on two facts. Xeloda peaks in the blood fairly quickly after taking the medication and icing the soles of your feet meet they metabolically slow down and are less likely to take up the Xeloda. It is the same theory as icing your head while on chemo to keep your hair.
Try icing your feet if Xeloda is causing your feet significant issues.0 -
I second icing/cooling your feet about 60-90 minutes after your dose (and after any prolonged activity/standing)....the feet burning is much less pronounced in the cycles where I am more diligent about using a cool pack on my feet, especially after I have walked a lot or been on my feet teaching for a while...coupled with 2-3x/day moisturizing, it helps minimize the HFS. It's worth a try.
Elizabeth
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Elderberry-My liver mets were 17 years ago and were very big and aggressive. I went on a (then) clinical trial of Gemzar and Hercpetin and in 9 months, my liver was clear. I did have to have a liver resection for the 9 CM tumor. My liver has been clear ever since and is fine.
There are so many chemos that do a great job on the liver!
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I took notes and will start the foot icing on Monday when I start back on the pills!!!
I also found that using Tea Tree Oil on my toenails-all around the cuticles, and at the ends, hoping that some goes under the nail....helps. I use it every time that I "re-ointment" my feet....about 4-5 times a day. I used to get a very sore and infected toe on my right foot every off-week. But since I started using the oil, I haven't had the sore toes for a whole month!!!!
There is hope!!!
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Good morning,
I have these little red bumps and swollen red big toe. No where else. It’s just in the tip. Is this hand and foot syndrome and what do I do for it? Thanks0 -
Thank you all for your welcome and advice! Much appreciated! I noticed people mentioned icing your feet, how is this actually done? Do you use an actual ice pack, or put your feet in icy water? Definitely want to try icing but not sure how to do it . Should have insurance approval this week. I have a list of questions for my onc and top of the list is the 7 day on, 7 day off schedule. She told me 14/7 but if 7/7 is better for side effects I would rather do that. Maybe that is why she wants me to see her every week, she did mention to monitor side effects. I have a lot to learn! Thanks again!0
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Lynn,
Liz used regular soft ice pack at first and then I found these,https://www.amazon.com/gp/product/B003L4WONS/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&th=1
They don't stay cold for a long time but they seem to help and are convenient.
Grant.
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Hi, Lynewood- I use foot-shaped gel packs to provide cooling-- I keep a set a home and a set at work, in the freezer. They cool my feet for about 20 minutes, and re-freeze in a few hours. I find them very convenient. I think an ice bath is probably too cold, and prolonged water is actually drying to the tissues, so you don't want to be soaking your feet that much every day.
I do do a 10-minute or so epson salt soak in the early evening the week I am "on" meds, and then moisturize very well as soon as I dry my feet...and then moisturize again at bedtime. The week I am offf I do a very gentle pedicures where I try to remove the thickened skin around/on my heels and on the tips of my toes. I trim my cuticles CAREFULLY, also. I do this 2 days before re-starting so that I can give any abrasions I may have caused some time to recover.
I also found in the beginning that I was getting infections along the sides of my big toes...On the advice of a podiatrist I stopped wearing closed-toe shoes...I wear Birkenstock sandals (sad to say, with socks--so fashionable!!) almost exclusively. I will wear very wide-toe-box sneakers for walks, but then I take them off immediately and cool my feet if possible. The slightest sustained pressure along the sides of my toes seems to bring on these infections...but since I switched to sandals I have not had a single episode of this...it's been about 4-5 months now. My feet are much happier, even though I look ridiculous sometimes. Thankfully my work is very supportive, and for the times I must wear real shoes I keep that length of time as short as possible.
The HFS is very manageable, especially if you are on a 7/7 regimen....which there is evidence to support efficacy similar to the 14/7 regimen, but with better compliance due to fewer/less severe side effects I hope you are on the 7/7 schedule.
Let us know who it goes for you-- I'm sure there are other things that people have found useful as well...
Best wishes for prolonged great response with few side effects!
Elizabeth
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Hi All,
Has anyone here on Xeloda had an incidence of bloating? I'm not talking just a little bloat, I'm talking about so much that it restricts how much you can eat and drink because of the pressure it's causing and you look like you're about 8-1/2 months along! I have been on Xeloda since 9/7/18 and except for H&F, the SEs have been the usual fatigue but manageable and no bloating. I was on Affinitor/Exemestane prior and when I came off of it to start Xeloda (about 3 weeks without either) I had the same bloating experience and it was attributed to ascites. If you've had it, what did you do for it and what explanation did your MO give you? I have a prescription for Lasix (furosemide) but it really doesn't help the issue much.
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My podiatrist told me to stop using Epsom salt since it dries out the skin too much. I presently have my feet on a large freezer pad.
When I have the sore, swollen toenail and toe, I use Betadine all around the cuticles.
But since I have been using Tea Tree Oil on all of my toe cuticles, I haven't had any more swollen and red toes. So far, this has lasted for a month.
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Denny I’m definitely starting the tea tree oils treatment to my cuticles and areas around the nails. I’ve noticed that’s exactly where all the cracks and peelings take place and they can get very painful as the skin thins out
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Hi Wallaby,
I'm just finishing my third round of xeloda, towards the end of the second week I get bad heartburn. During the week off I have really painful gas and bloating. Going to ask my oncologist about it at my next visit. It's horrible.
Ally
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Are pedicures allowed on Xeloda? I have trouble reaching my feet to cut my toenails correctly and rely on pedicures to keep things nice. Should I switch to a podiatrist to have my nails cut? The place I go to is immaculate and all utensils are sealed and opened in front of me.
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Wallaby ! BLOATING ! To be honest, I had it before I began Xeloda, but boy !!! I feel like I'm 24 months pregnant with twin elephants, and VERY uncomfortable. I've been wondering if I have some kind of other thing going on horrible.
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allybee....you might want to take X in the middle of your meal instead of 30 minutes later...check with your doctor....
I personally couldn't possibly take it 30 minutes later, as prescribed, because the sheer idea of having my digestive system totally exposed to a powerful chemotherapy agent that is incapable of distinguishing between good and bad cells, just doesn't make any sense.
I also need to take digestive enzymes before eating—due to the side effects of prior treatment —and if I waited 30 minutes the medication would simply be sitting there destroying the lining of my stomach.
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AllyBee, not that I would wish bloating like this on anyone else but I'm glad to know I'm not the only one! Gas-X has become my best friend! It does help some and my MO gave me a prescription for furosemide (Lasix), a diuretic, to help get rid of some of the bloat. I had some reflux type issues with both Affinitor and Xeloda (at first with X, not so now) so I started propping up my two pillows and leaning back on them, like I was sitting in bed reading, and sleeping in a more or less upright position. That helps with the acid thing at night and, actually, with the pressure from the bloat. Strangely, the bloat is a little better today than it has been for a week. I'm sure the ascites are still there but maybe they've slowed down production!
I saw my MO today and my TMs have jumped another 20 points. When I went off the Affinitor (which I hated!), I had bad bloating from ascites but when I started Xeloda, it went away. Well, you don't just "get" ascites unless there's some increased activity associated with the cancer. My insurance (Aetna PPO) refused the PET/CT scan she requested last month so she is requesting a bone scan and regular CT today. Unless the CT/Bone scans show no progression, she is going to move me to Doxil (Infusion) at the end of this month. I'm keeping my fingers crossed that the scans don't show progression so we can keep trying Xeloda. I had such high hopes for it.
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Amarantha: I know just what you mean! Strangely, mine is a little better today, not as much pressure on my stomach/lungs. However, I saw my MO today and my TMs have jumped another 20 points to 100. When I went off Affinitor (which I hated!), I had bad bloating from ascites but when I started Xeloda, it went away because the X was working. Well, you don't just "get" ascites unless there's some increased activity associated with the cancer that the chemo is not taking care of. My insurance (Aetna PPO) refused the PET/CT scan she requested last month so she is requesting a bone scan and regular CT today. Unless the CT/Bone scans show no progression, she is going to move me to Doxil (Infusion) at the end of this month. I'm keeping my fingers crossed that the scans don't show progression so we can keep trying Xeloda. I had such high hopes for it. In the wacky world of MBC, my CMP (comprehensive metabolic panel) tests were stellar! I have liver mets and my alkaline phosphatase was in the normal range for the first time in eons. Strange how those can improve and yet we're talking about progression.
I hope you find some relief as I know how frustrating dealing with the bloat is...just makes you feel like curling up in bed and never getting out!0
