All about Xeloda
Comments
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feeling down as went in today to get tablets for second round to start today and my blood tests show 2 markers up a bit . They say one round is to early to judge and they won't make a decision til three rounds. Anybody else had this experience. Also they gave me the same high dose for now but not sure if I will be able to cope with it as beginning to get the diarrhoea .
Encouragement appreciated Barbara
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Hi. Need some encouragement. Went to hospital today for second round of xeloda tablets and markers had gone up . They said one round of tablets was not enough evidence but I am nervous. Also they gave me the same high dose of 8 tablets but I don't know if I will be able to stick it as the diarrhoea is beginning. Barbar0 -
Hi Barbar,
Sorry that you are feeling nervous and have the dreaded D.
Yes, give it at least another 3 weeks. I assume that you are on 14/7 cycle? your red blood cells live for 6 weeks. So when you have a blood test, it may show information up to 6 weeks ago.
Contact your oncologist if your diarrhoea is excessive, as you should be given something that will stop it or make it more controllable. Dont do what I did, coz I kept going and ended up in hospital as I burst a blood vessel while sitting on the loo, haha.
As a last resort, your onc will reduce the dosage, but I know they want to give you the highest dose possible for the first couple of cycles so that the cancer gets attacked with as much power as possible.
Have you got anything for the diarrhea? Also keep away from milk products as that makes the D worse.
Keep your fluids up and if you have more than 4 motions in the 24 hours after taking anti D medication, then you need to contact your oncologist immediately.
Warm hugs
Mandy
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Thanks Mandy. Your reply did help. I am on the 14/7 cycle with 8 a day at the moment and the nurse did give me some anti- diarrhoea tablets this morning. I guess I was hoping for some indication this morning it was actually working especially with a pain in the chest as well. I did ask if I shouldn't be taking zometa as well but apparently the onc doesn't think that pain is from the bone but soft tissue Barbar
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I anticipate having this problem since I am new to Xeloda. Do you think Aloe gel will help?
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My hands and feet have been so bad I am taking an extra week off between my two-week, pill-taking cycle. I have also starting mixing and using Giovanni's recipe for Uridine cream. Already noticing a big improvement in my feet though hands seem only slightly better. Giovanni said it takes about 3 weeks to see the full benefit. Thanks Giovanni!!! Super easy to make the cream. I ordered Uridine capsules from Amazon and mixed that with Cetaphil cream I mixed the contents of 20 250mg Uridine capsules with 45 gram of Cetaphil cream (used a kitchen scale to weight the cream). I think Giovanni mixes the powder from the capsules with some water before adding it to the cream which I forgot to do this time but will try next time.
Cheers, Susan
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Thanks Mandy for this suggestion. All the best to you.
Penny
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Having a bad day today . Too many aches and pains but the side-effects not any worse at the moment. Just wish I could feel it is working !
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Susan, I also give myself a two week break when Xeloda side effects begin to gang up on me. I'm currently on a 14/7 Xeloda schedule.
Oncologist said he prefers I take a two week break when I feel I need it versus going to a 7/7 schedule. He feels a 7/7 schedule reduces the dose too much.
So far it seems I give myself a two week break about every other month these days. My hand foot syndrome never goes away and only worsens as the drug accumulates in my system.
Kessala
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Kessala,
Appreciate your feedback. My MO thinks the same thing, that going to a 7/7 schedule would be too big a reduction. Started back on Monday. Will see how things go. Trying to be very vigilant about keeping my hands moisturized and using Cetaphil sensitive skin soap to wash my hands whenever possible. Using Giovanni's Uridine cream morning and evening. Things are good now. If my hands get bad again this cycle despite all of this I'm going to ask for a one pill reduction a day. Right now I take 3 pills twice a day. I remember that was rounding up for the recommended dosage for my weight, 105 lbs.
It drives me crazy that airport bathrooms seem to always have only hot water coming out of the faucets and the temperature can't be adjusted. It's painful for me. Anyone else have this problem?
Hugs, Susan
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Just wondering if any of you have had to drink the Barium solution before having a CT scan. I am having one next week and already have myself all nervous about having diarrhea before I even get to the radiology center. Am interested in what side effects that any of you have had from having to drink this. Thanks for any information you can offer.
Joy
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Aussiemum, I have terribly watery/itchy eyes. My nose drips drips drips and I sneeze like crazy! I have allergies in the spring, have never had them in the summer. So I don't know if I have new allergies or if I'm somewhat allergic to X. If it's X, I'll take it, better than some of the other SE's. I do have H/F, but it's mostly dry and somewhat cracking, no blisters or burning.
I took a 2 week off, as my SE's were getting worse. My TM's went up when I did this
. Doing labs end of this week to see if they went down, hoping so!0 -
To improve the exchange of information I think it's useful to explain that there are 3 degrees of HFS (hand foot syndrome)
- Grade 1 - Painless erythema, dysesthesia (abnormal feeling), paraesthesia (sensation from tingling to burning) discomfort that does not disrupt normal activities.
- Grade 2 - Painful erythema, with swelling (discomfort that affects activities of daily living).
- Grade 3 - Desquamation, ulceration, blistering, severe pain (severe discomfort, unable to work or perform daily living activities).
Grade 3 may induce the oncologist to discontinue capecitabine chemotherapy. The WHO (World Health Organization) has published a classification with 4 grades.
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Good information, Gciriani! Just to clarify for all of us, the word erythema means reddening of the skin.
My hand/foot syndrome bobbles between Grade 2 and Grade 3. After being on Xeloda for two years I'm at Grade 2 on my best days. This is after two dose reductions.
But Xeloda is working.
Kessala
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Hello all - I was on this board a few months ago when I was trying to decide whether to do Xeloda or not. I thank everyone who contributed their thoughts, it helped me to make my decision. I started Xeloda June 21, and have only been able to complete two cycles. I am on 1800 mg per day, 5 pills twice a day. Four days after I completed my first two weeks of pills, I broke out in shingles on my left arm and shoulder. Pretty spectacular. Then a few days later a rash started on my chest and spread to my face. I look like a clown with the two bright red splotches on my cheeks. Off to the ER. Had two weeks off Xeloda, for the shingles to die down and complete the anti-viral meds, then did another two weeks with the rash continuing to grow. Saw onc on Monday, when I was to start my third cycle of Xeloda, and he wants me to have a bone scan. The rash is a mystery. He wants to see what happens if I am off Xeloda for two weeks and also if there is any improvement in the bone mets.
I read many of the recent posts. For ladies with nausea, has your oncologist prescribed an anti-nausea drug? I get a bit of nausea sporadically on the Xeloda and just pop an anti-nausea pill and that takes care of it. For those having foot problems, I bought bag balm and cotton gloves (at the pharmacy). I have not had any problems but I am pre-emptively slathering on the bag balm, and so far so good, no problems on hands and feet. The bonus is that my nails are beautiful and strong from the bag balm!
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Stage_IV_in_Montreal, I got that rash too, chest, top of back, face and even on my arms and legs. 10 pills a day is the most I have seen anyone take. 8 is the most I have seen. I started on 7 pills (4/3) a day, did that for one cycle, blistered lips, and more. Onc dropped me to 4 pills a day (2/2) rash let up some, then he eventually up me to my current 5 pills (3/2) a day. I started getting mouth sores, so asked if I could take a 2 week break instead of 1. He agreed. Rash cleared up even more, but my TM's went up. I still have the rash, but it's quite mild. It's just the itching that is annoying, and if you break the skin, of course it's forever healing. I think I would ask for a lower dose. The amount of pills goes by your weight, you don't look like you are over weight? If that is you in your avatar.
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Hi Ladies,
I am approaching the end of Cycle 4 on Xeloda. I feel lucky not to have the hand and foot issues many of you have. I am on the 2 weeks on, 1 week off schedule. Taking 1500mg 2xday. I do seem to have nausea, diarrhea, fatigue and stomach cramping side effects. It's funny but some cycles the nausea and vomiting is worse and other times it is diarrhea and stomach issues. My onco has prescribed Zofran for the nausea which works most of the time. I have to take a half a tab because it makes me feel kind of woozy. She also prescribed Lorazepam that I take when the cramping and stomach burning gets too much to tolerate. I feel bloated most of the time and have heart burn after eating. I feel like a whiner complaining about all of this but it does affect the quality of my life. I went to a nice restaurant on my week off and had explosive diarrhea in the women's rest room and floor just out of the clear blue. I now carry an extra pair of panties as well as a barf bag with me at all times. I see my onco tomorrow to check tumor markers. I am quite depressed about the quality of my life at the moment and wonder if this will be my life from now on. I see my therapist tomorrow as well.
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Hello. Judi, we seem to be having very similar side effects. I just finished Cycle 2 (on my second off day today) and I have had no symptoms of HFS, but the digestive/stomach issues thing is really getting to me. This cycle it started on day 5 and lasted through yesterday (so far today I feel pretty good). That is a long time to alternately have diarrhea and vomit. Zofran does not touch it. I am on Protonix for the heart burn, but it isn't really doing the trick either. A couple times a day (within hours of eating) I get heartburn/pressure in my chest. Almost immediately following I get increased mucous in my throat which then makes me gag and vomit. Sorry for being so graphic, but I am trying to figure this out. I am not losing all of my food, but a lot of thick, mucous like stuff and liquids. It's like I feel really full and until I vomit, I have no relief. The diarrhea is not every day - seems to come and go, but this vomiting thing? Every day from Day 5 to day 15. That is a long time to feel like crap. I am trying to work through it and I hear ya on the QOL thing. It is so hard. By the time I get home at night, I am just exhausted and end up lying there like a spaced out zombie until I fall into bed around 9pm. Ugh.
I see my onc this afteroon and am going to again ask if we can switch to 7/7. I really think that would be more tolerable. I get markers run today so I am just hoping like hell that I see stability at least (although would love to see a reduction). Maybe some forward progress would make all of this tolerable?
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hi everyone. I seem to be doing quite well on the side effects of x this time but am worried about a pain in my reconstructed breast which hurts when I reach up or turn or move into different positions when sleeping . Barbar
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Thank you for posting and validating my side effects and feelings. I saw my onco yesterday but still don't know my markers due to some office snafu. Will know today. I have mets to the stomach and colon. My onco thinks it is the cancer that is giving me severe stomach upset. I feel better on my week off though... She has ordered a CT scan for next week to determine cancer mets status. Now, she is saying Taxol is the next drug to try. I want a balance with quality of life, side effects of meds and time left to live... Big questions and considerations. I do hope you can find some relief going on 7/7. Thanks again for your post.
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Very similar, Judi. My mets are to my small intestines and we think that is why I am having problems as well! I got my markers result back today.....It dropped from 317 to 165 after two rounds. I will take that as a win. We changed up meds...doubled my dose of Protonix and added Reglan for next round. We are going to try two more 14/7 and then if we are still seeing good results, we will then go to 7/7. Hope your markers were good! Good luck with the scans!
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Does anyone know the what the deal is with Xeloda (or its generic Capecitabine) and Medicare?
I'm trying to select a plan for my wife, but the insurance companies are not clear. There is conflicting information in their websites, and the call centers are not sure whether it would be covered by part B or part D, or even not covered at all. It also seems that different insurers treat the drug differently: one says it is not covered, another one doesn't even list it in a comprehensive directory of drugs.
Any feedback from personal experience would be helpful.
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I don't know as I'm not there yet, but I often ask insurance questions to the office at my oncologists. They have so many medicare patients, I'll bet they might be helpful.
I don't think Xeloda is an expensive drug (relatively) in its generic form, so I can't see why it wouldn't be covered. Mine comes from a specialty pharmacy but is covered by my insurance and treated like chemo. I believe most chemo is covered by part B rather than D in medicare--but not positive.
I just finished my first cycle of the medicine, and the main side effects for me is my face looks like it has a sunburn. It didn't show up until the last day. Other than that, I seem ok. I hope the second cycle is as easy on me.
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Thanks Sandilee, it's a good idea: i'll the oncologist office. I calculated the cost of generic Capecitabine 6/day, 7 days on, 7 days off, to be $29,000/year.
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Ok - so I'm obviously wrong about the drug not being expensive! Jeez. I hope you can find something out soon.
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Giovanni, I'm sorry I am not any help at all. Wishing you the best and pray you can get it covered. And no, it is not a cheap drug at all. Mine costs $2000.00 for 2 weeks of pills. I'm on 2 weeks off 1. Thank goodness for insurance, who the hay can afford such drugs!!! I am cycle 10, started the beginning of Feb 2015.
Giovanni, you mentioned some cream for the H/F SE's, does it just keep it moist, or does it actually help to get rid of it, or improve it? I believe it was something like uridine?
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Goldie,
The uridine-based cream decreases the intensity of symptoms by one or two levels* in most people. The cream is only a medium to allow uridine to travel beneath the skin. What uridine does, is it slows down the death of skin cells caused by capecitabine (Xeloda), as shown in this study. The reason why hands and feet (and other body parts) are affected by capecitabine, is that they are rich in capillary and there is more chance for the drug to leach from the blood stream; feet and hands are disproportionately affected because increased pressure on them (walking, working with your hands etc.) increases leaching.
In email exchanges I had with the authors of the clinical drug trial, just using cream alone helps because one treats his/her feet and hands more gently, decreasing pressure and rubbing; however, cream alone won't slow down skin cell death. Other remedies employed by dermatologists may even be counterproductive, because they will try to subdue an inflammation, that is actually not there. My experience has been that dermatologists don't know what they are dealing with.
Note*:
see my post classifying HFS grade on 8/12.0 -
Just started Xeloda today. I am part of the METRIC study and was assigned to the control arm which is Xeloda. I see all the comments about "number of pills". My cycle will be 14 days on then 7 off. I was given 4 pills of 500mg and 1 of 150mg to take twice a day....its seems like a lot! Its great to have all of these tips on the board to help prepare for side effects.
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Grahaad, are you triple negative?
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Yes I am triple negative (and androgen negative).
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