All about Xeloda
Comments
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hi everybody. At the moment I am doing 8 tablets a day which is really difficult in terms of tiredness and stomach upset but nearly at my first week off ! Barbar
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OMG Barbar, I couldn't handle 7, and you are doing 8?
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Hi Barbar, I started on 8 a day. It is a high dose and yes, you will probably get side effects to the max. If any of your side effects cause you extreme pain, or discomfort etc, contact your oncologist immediately. there are a lot of drugs to counteract the side effects or your oncologist may reduce the dose. The initial dose is usually at the maximum so that it kicks cancer with as much power as possible. However, your health is also important. If you can handle the side effects, carry on. We are all so different, so just be aware that the first 2 or 3 rounds of X are the worst, but as long as it kicks butt. I am now on 5 a day and I have chosen to take X for 11 days and then have 10 days off, this is still a 21 day cycle, and I noticed that my side effects kicked in too harshly on day 12. My oncologist will not do a 14 day cycle on X (7 days on/7 days off). I have been on x for almost 3 years and stable. I changed to the 11/10 cycle after the first 18 months.
Warm hugs
mandy xxx
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hi everyone, I anticipate starting xeloda sometime next week. I was told I would be on 6-7 pills, 14 days on and 7 days off. I've skimmed over the posts, but was wondering if there was anything in particular I should do or get before I start? Thanks for your help in advance
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Heya Letranger - might be an idea to stock up on hand foot/cream and anti-diahorrea tablets. As others have mentioned, they seem to start you on a high dose then reduce it later on (so, for me at any rate) the first couple of cycles were the worst then it got easier. Having said that, the skin peeling on the feet is a royal pain in the butt - so moisturise heaps to stave it off.
{hugs}
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thanks everybody for your encouragement. I am struggling with the 8 in terms of tiredness but going to try to keep it going until I see the onc after 3 rounds. Just hope it's working . Can't notice any change yet eg the swelling in sternum but I am still on the first round. Tomorrow is the last dose of tablets before my week off YAY!
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thanks a bunch, blondedoris! I'll be right behind you, barbdenise64 and lynne1!!! Check in with you all later!!!
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My wife's dosage increased today from 4 to 6 pills/day (still one week on, one week off), and zometa from one infusion every 12 weeks to every 8 weeks. The oncologist sees this as an alternative to switching to a different chemo altogether (an infusion every day 7 days on, 7 days off, it sounded like Halavan but I didn't catch the name). The decision is triggered by tumor markers steadily increasing for the last 6 months from 156 to 209, several spots on the hips, and one on the neck becoming more visible (out of more than a dozen metastases).
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Giovanni, so sorry your wife is having the rising TM's and has to increase her X. That is something that would scare the bejeebees outta me. Mine got down to 60 and went up to 70 on my last labs. They had gotten up to 120. Too bad she couldn't try 5 pills first and maybe do 14 days on, and 7 off? Wishing her all the best!
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Such great information on this thread. I will be starting Xeloda on Monday, 6 pills a day, 1500 mgs each morning and evening. I have cream for my hands and feet, but I plan to pick up some nausea meds. Is nausea a common problem? I expect to be tired from the blood counts dropping. My onc also mentioned darkening of skin. Anyone find this happening? Like the rest of you, I can tolerate anything if it's working. (maybe famous last words..)
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Hi Sandilee
What threw me a bit was I got to day 13 with no hands and feet problem when suddenly my right foot became very sore indeed under the sole. I think the worst thing has been the dreadful tiredness but I have got to the week off so I know you can do it . Good luck barbar
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Sandi, we are all different. I had no nausea at all, and I think my blood levels are fine as well. I got a rash, H/F syndrome, some fatigue, and other things on my first cycle, which was 7 pills a day. I am now on 5 a day, so other things are better. Good luck and I hope you get many years on X!
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Feeling nervous! I am getting my Xeloda shipped tomorrow. I will start on Mon or Tues. Pharmacist said 5 tabs (500mg each), 14 days on, 1 week off. Looks like I will be starting with some of you.
She also said that people who are lactose intolerant have a harder time with digestive issues while on Xeloda. And that it is best taken 30 min after breakfast and 30 min after dinner so the stomach has time to get lined to hopefully diminish some of the side effects. Also common SE's are red/itchy hands and feet and darkening of the skin.
See you next week!
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Is started Xeloda this morning, and so far, nothing to report. I think the hand/foot thing gets worse as you take it, so I'm watching for that. Tonight after dinner I'll take another dose, and I hope I continue with no nausea or anything.
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When you first start Xeloda, everything is usually OK, perhaps except for nausea creeping in. I am lactose intolerant and I started on 8 tablets a day. Explosive diarrhea started to kick in about day 8, probably had tummy aches before then, and I went off coffee. Everything smelt and tasted different. My feet also started to get blisters on the sole after about day 8.
Usually You start with a high dose to kick the cancer cells to oblivion and then the dosage gets adjusted.
If you can manage the side effects with medication, keep going. but if you cannot tolerate it because they are too extreme, contact your oncologist immediately. I was hospitalised due to excessive diarrhea and I must have burst a blood vessel coz it looked like i had my periods, i was 60 at the time. Medication was given to counteract and I stayed on the same dose for another couple of rounds. It really kicked butt, and I thought the trade off was worth it. Fatigue is also another factor. Get your vitamin D levels checked or start taking Vitamin D as well as Vitamin B complex including Vitamin B12. I also take Calcium tablets, Vitamin C and Magnesium.
Wishing the newbies good luck, hang in there girls. If it works, your body will get used to it and learn to tolerate X better in time. It is a gentle chemo in the long run. My 3 year anniversary with X will be November 27 this year. Wahoo!!!
Warm hugs
Mandy xxxxx
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Hi Mandymoo,
Do you have a record of what your tumor marker was when you started X and what it is now? Could you share that please?
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My CA15.3 tumour markers were about 500 ish in November 2012 and they started to reduce after the first 6 weeks, very slowly, (abt 50 each 6 weeks). The tumour markers finally got down to 38, 34. etc after 18 months of X or about May last year. They have been in the normal range until February this year, but they are only fluctuating between 40 and 60. Tumour markers are usually a guideline, and maybe there is something else happening beside cancer that is making my tumour markers fluctuate. My onc is not concerned as I have no symptoms, and I am due for my regular scans in September. I havent bothered with a record of my tumour markers since they started going down.
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Thank you Mandymoo: it looks you are doing great! I'm having difficulty comparing marker levels because yours are CA15.3 but my wife's oncologist always prescribes CA27.29. I'm trying to read available literature to learn how to compare them.
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Hi Mandimoo
Did you say that when you first took X it was about 6 weeks before it started having any significant effect? Just asking because although I am feeling a lot better this week about the side effects I don't think it's having any effect yet as my sternum hurts Barbar
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BarbDenise64,
I think it takes longer for the pain to decrease, because the metastases locations on the bone have microfractures that take time to heal, like a normal fracture.
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Hi everyone! Is anyone taking X in combo with something else? I started my first dose yesterday (Monday). Boy, those pills are HUGE! Nothing happening yet. I'm on 5 pills for 14 days on and 7 days off. In my case, we are hoping it will cross the BBB.
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The blood cells in your body only live for 6 weeks (I think 40 or 42 days not quite sure exactly). That is why the oncologist checked my tumour markers after 6 weeks. I get a blood test every 3 weeks but tumour markers are done 6 weekly. I hope that makes sense.
From what I remember, I only had breathlessness and that was due to my pleural effusion which is why I ended up in hospital. Scans done during my hospital stay then showed mets to the liver, lungs, and brain as well. I was already diagnosed with bone mets 6 months prior. So I really did not have any side effects (except from headaches and occasional lightheadedness for a week before admission which I thought were stress related). I had my scans 9 weeks after starting X and the scans also showed improvement. Subsequent scans were done every 3 months until September last year as all organs are now NED, except for the bone mets. I am also on Denosumab 6 weekly for over 3 years now.
Letranger, wishing you the very best of luck.... Yes X does cross the BBB, and I hope that in your case that it will do its job. (it did not for a very dear friend of mine). We are all different and when one chemo will work for one person, it may not work for the other. We all need to keep going until we find a chemo that will work for our own individual mets.
I am not sure what the difference is between CA 15.3 and CA 27.29 neither. I would love to find out though. I think that knowledge is power.
hang in there newbies. Side effects normally kick in after the first week and then taper off on your week off. If you can handle it, keep going. but if they are too bac, contact you oncologist immediately, coz there are medications that will counter act the side effects in most cases. The only SE that most people have problems with is HFS, and after a year, I have learned to live with it and manage it to the best of my abilities. Try to keep the dosage high initially so that X kicks butt, however, your health and comfort is important too.. All chemos are harsh, but in the long run, X is quite gentle, and I hope that I can keep taking X for the next 20 years, but oh well, I can dream haha.
Warm hugs
Mandy xxx
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Mandymoo,
Thanks for all that info and the encouraging words! I am trying X with Neratinib and hoping they will work synergistically to cross the BBB. I've also upped my supplements and trying to eat as best as I can. Anything to be around for my 4 year old!!! Mandymoo, how did you control the brain mets that you mentioned? You're a long term survivor so you know I'll be keeping up with you! Your success gives us all hope!!! All my best.
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I have not had any surgery or radiation for my brain mets. I had 3 brain mets, all in the lining of the brain. One above the right eye, another at the front through the centre dividing line (?) part of the brain and the 3rd one was on the right hand side parietal area which was in the meninges, and that one was the most life threatening. I was only given Xeloda back in 2012 and surprisingly, it has done its job.
I just can't understand why this treatment worked for me and not another person. It would be wonderful if everyone got the same results as me....... I know that I am just soo very lucky, and truly hoping that there will be more that have great results. I do take a lot of vitamins and I have noticed that they do help my body stay as strong as possible. I have fatigue, but I push myself. I figure if I stay in bed longer or do nothing and rest, that I will give in. That is my personal belief and I do sometimes give myself a Donna day lol.
Sounds like your multi combo might be tougher and stronger on your cancer, so I will be holding your hand and keeping my fingers crossed for you.
Warm hugs
Mandy xxxxx
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Mandy, I really needed to read that post from you! I am so happy there is hope for me. I appreciate the time you took to write it. There are some amazing women on the site. Thank you, again. I'll be checking in later!
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I wish there was a "like" button as on facebook. haha. Yes, I hope more and more women will be writing good news posts. but I guess that it is easy for people when things are going well or if you are considered "stable" that people go on about their own business and do not check the posts coz we are too busy getting on with our lives, and most people who post are the ones who need answers and support because they are just stating a certain treatment or they have questions. I am guilty of not reading posts for a few weeks and then when I have time I start to read some of them, and I think, oh dear, I had better give them some of my input and possible hope.
I have heard of a few being successfully on X for over 3 years and one person was on X for 6 years.
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Thankyou to all the ladies who contribute to this thread. I am one of those who read all the posts but perhaps feel I don't have much to to contribute due additional issues.i I've been on X for 6 months now, 500mg x2 twice a day . My feet were so bad with large blisters and inflammation on cycle 2 by day 11, that my onc changed to 10 days on 11 days off. I now use a vitamin E and candela cream mixed with herbs which has helped enormously.
I suffer from constipation while on X and If not careful, D on my off week if I'm not careful with laxative dose. Fatigue is a big factor but related to bone marrow cancer not producing red blood cells and ascites, ie excess fluid around stomach cavity. I take vitamins and herbs as prescribed by my naturopath which I'm convinced has kept me as well as possible. I try to walk or ride when energy allows.
I don't recall anyone mentioning eye problems, which I get on approx week before I start X. It feels like I've been peeling a bucket full of onions. Eye drops haven't been very successful so far. Any suggestions
It is enormously encouraging to read about others experiences and hearing what has worked for others.
Vicki
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Hi Aussiemumof2,
You are right, My eyes watered continuously, I forgot about that as I am so used to it now. However it is mainly my right eye now, it just looks like I am crying or sad I guess. My explosive diarrhea was also real bad, and I have been on 11 days on and 10 days off for about 18 months. That was my choice as my side effects kicked in on day 12. My oncologist accepted my decision. hang in there, and I hope that X keeps working for you for ever as you certainly do have many other challenges as well.
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I was wondering if anyone has tried something other than cream on their feet to stop the burning sensation which is caused by Xeloda. Thanks
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I have put my feet in a bowl of ice water, especially on a hot day or if I have been on my feet too long and I can feel my feet burning. (also adding some magnesium salts in the water, but not sure if that helps at all.) eager to hear any other clues.
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