All about Xeloda
Comments
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I’ve been in Xeloda for 7 months now without hand and foot issues. Dry skin and mild itchy rash but no pain. It’s a blessing indeed. I do have watery eyes, runny nose and now cataracts. Scared to death of cataracts!
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Denny, did you start out 16 years ago with liver mets?
Dianarose, I also have watery eyes and drippy nose. Thinking of visiting an ophthalmologist to find out if there is anything to use or do besides the Systane preservative-free drops. I never know if these things are due to chemo or to menopause as I was punted into menopause by my first chemo.
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hi everyone, I have just completed my first cycle. Start cycle 2 on Thursday. In the UK they give us pretty high doses. I'm on 4300gsm daily. I have found side effects quite tolerable. Onc said he will probably reduce after next cycle if my side effects get too painful Do have a bit of diarrhoea which is better than my usual constapation. Had a bit of a dull headache constantly for first week. My main problem is thrush. At least I think that's what it is. I forgot to mention that to onc last night at clinic. I just used topical cream but still quite uncomfortable. My feet did get sore so even in the house I wore sketchers about. Really helped until it passed. If you have never tried them honestly they are like walk on air. They can look quite trendy too if you don't want a trainer look. Also have a great pair of new balance for day wear.
Great to hear ladies on this drug for a long time. Denny amazing! 16 years! You are an inspiration. I do not use that word lightly, it is do over used but you definitely are one. I really hope Xoleda will be as good to us as it has been to you. 5 years and counting would be Amazing!
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well i think i have the solution to my HF thing, i put aquaphor onmy hands and feet at night, then wear socks and white gloves. During the day i use a lighter cream. It seems the peeling is calming down but do confess that they are still sensitive and slightly sore. But just plain dealing with it. I would like to be like others on here with long life
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Goldie, I take three in am and two pm. Do you know if it makes any difference? The oncology pharmacist said if I wanted to take Imodium AD for the diarreah that it should help with the cramping, which it did some, but if I don't have diarreah I'm not sure I should be taking the Imodium. I have a call in to my doc because I have a fever (please please don't let it be neutropenic fever been there done that)
Dianarose and Shetlarnd, I have the watery eyes too. It's started with Taxotere and it's horrible. I went to the opthalmologist hoping he would tell me my ducts were blccked and he'd put tubes in but no. He told me to do what I had been doing for months which is warm compresses and eyedrops (Refresh) and asked me to add Genteal drops which I think are thicker and take an omega 3 supplement which I haven't been doing regularly. Horse pill! He said it takes a few weeks to see improvement. He also told me I have cataracts but not to worry, it's very common at my age (61) and that I'm a long way away from having to do anything about them. I'm skeptical that this regime is going to work but probably should take the omega 3 regularly.
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intothewoods- what is a long ways in regards to the cataracts? My eye doctor said mine have just started. Hope he means years. I get freaked out just thinking about it
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Thanks ladies. Yes, I started out with liver mets upon my BC dx. I use Restasis for watery eyes, since they are really dry eyes.
My eyes were a lot worse on Kadcyla though. I have had cataracts for 16 years, but they haven't gotten much worse at all.
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Denny- I use restasis also. Can’t believe it’s well over 400.00 for a months supply and you really have to squeeze hard to get it out. What a rip off!
It’s encouraging to know that you can go for years without the cataracts getting worse. Thanks for sharing that.
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Thanks for the replies about the eyes. Omega 3 makes sense since it is anti-inflammatory— i was doing some reading and the article (written for medical types) said that inflammation can be part of the problem, and mentioned omega 3. I asked my onc if she had Xeloda patients complain of dry eyes. She said yes, and asked how severe it was. She agreed with my plan to see an ophthalmologist and said I may need some steroid drops. That would be for inflammation. Intothewoods, how do you do warm compresses while protecting your hands from heat?
Denny, that’s great, and encouraging
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Regarding the pill schedule, I decided to take two in the morning and three at night because I read that cancer cells are more active at night. And also maybe i would sleep through any nausea.
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Hello everyone. I am back again as well. I was on Xeloda for 44 months previously until it stopped working and then I went onto Afinitor Aromasin combo for the next 18 months.
I have just completed 2 cycles of Xeloda and I am happy to say that it is working the second time round.
Its lovely to see leftfoot forward back again as well.
hopefully we will start a trend.
hugs to everyone.
Mandy xxxxx
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ShetlandPony, I take 2 in the morning and 3 at night as well. I found that easier taking the extra pill at night, they are pretty big
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I am amazed that I don't have any major "hurts" today, since they always seem to hit me on Tuesdays.
)My hands and feet are peeling, but not sore at all right now.
I only pay a few dollars for my Restasis, and my bills show that it is $1,400 ???? Good Lord.
I am on 2,000 a day....7 days on and 7 days off. Plus Herceptin via IV.
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Intothewoods, try changing your dose to 2 am and 3 pm and see if it helps. I don't see where the medical factor of switching the dosage around would have anything to do it. So I say it's worth a try. I do my own adjusting, and my onc is ok with that. He says it's my body and no one knows it better than me. I've been on it for 3 years now, and it's so strange how differently it affects everyone. There are SE's that were bad in the beginning, esp. the fatigue, which isn't too much of a problem now. The HFS is not fun at all, and I'm starting to get itchy on my arms and legs mostly. This happened to me when I was on 6 and 7 pills, but I got a rash. No rash this time. Very weird ridge on each nail. Big toe nail on both feet lifting, I'm using coconut oil and tree tea oil on those. Runny eyes and nose, nothing helps that. Eyes VERY sensitive to the sun. HFS, my right hand and left foot are the worse.
I take hemp oil along with MMJ, and when I don't take it, the "D" is horrible. But hardly no cramping.
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Thanks ladies, I think I'll try 2 in am and 3 at night. It truly is amazing how we all react so differently. I was expecting X to be easier than Taxotere becasue I had heard from others on the boards that it was easy for them . This week off my appetite has disappeared and everything tastes like cardboard. I had taste changes with Taxotere too but this is worse. Be careful what you wish for- I needed to drop some pounds which I did but now I'm still losing. After my visit to the ED deprtment last night for evaluaion of the fever (it's not neutropenic fever, yea!) my oncologist called and when I (half) jokingly told him I may need to start Ensure he said it wasn't a bad idea. What?!?!? I wanted him to say my appetite would come back. Anyone else have fever the week off?
Shetland, I can do the warm compresses since my hands are only minimally effected- the backs of my hands are very very dark and the palms get red but no pain . I bought one that can be microwaved and it requires little contact with heat becasue you can grab the head strap. It's made by Bruder. Also I did take the fish oil capsule yesterday and my eyes were less watery.
Dianarose, I'm so sorry that the cataract thing is causing distress. I didn't actually ask the opthalmologist how long "a long way off" was- I took it to be many years if not decades.
Mandymoo, your long run on these drugs is awesome! Hope you get another long run on X
Denny, wow. Just wow
You're an ispiration in more way than one.And I'll chime in about the Skechers Go Walk. I bought two pairs for my trip to San Fransisco and one in particular (it has more upper support) allowed me to walk a lot without any problems.
Be well today everyone!
Lisa
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Thanks Lisa! Hang in there!
Right now I am not too bad, but walked around WM all day since I needed so much. Hope that my feet will be okay tomorrow.
I am only on 2,000 a day at 7 days on and 7 days off. Two more days of pills then a break. Love my Skechers and just bought sandals that I hope that I will be able to wear if it ever quits snowing here in PA. Will definitely have to polish my toenails to cover up the black marks.
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Leaving the group (I read but don't post often) PET Scan yesterday and that nasty little bugger on my adrenal gland has begun to grow (UUGGGHHH) So moving on to different treatment routine.
I wish all the best with a long run side effect free run on xeloda
Best
Ellen
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Nel- sorry to see you leave. Hope the next line of treatment kicks some cancer butt!
Does anyone find they sleep a lot more on Xeloda? I sleep 10-11 hours. Seems like a waste of precious time but I’m just that tired
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Nel, may you surf this new wave and land onshore with peace and healing!
Dianarose, I can easily sleep 10 hours and often do and I still feel a lack of energy upon waking. I also nap a lot. But I've always been one who did better on 8 to 9 hours of sleep. The most compassionate thing may be to just let yourself sleep without judgment. We all could be more kind to ourselves. I certainly could.
Denny, thanks for the encouragement!
Lisa
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oh yes, i do sleep more on xeloda. I hit the bed at 8 and this morning then phone woke me after 9. Gads, but my last pet was good so dealing with it
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Thanks for the feedback on sleeping so much. Was beginning to think there was something wrong with me lol.
The dam lump under my arm pit is getting bigger and is bright red. Ultrasound on Tuesday. Doubt it will tell us anything. Lobular is not going to show up on an ultrasound. Just more waste of time and money . Just cut the dam thing out and let the lab decide. It’s about the size of a large marble now.
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Dianarose,
I hope the lump under your arm turns out to be nothing too concerning. Has it been there for awhile?
Sending positive thoughts your way....please let us know the outcome. We care!
Laurie
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Good luck Nel!
I am also tired on Xeloda, but was more tired on Kadcyla. So it is an improvement, really.
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Hi Denny 123, One day, you gotta tell us your secret, your "thing" of living long with this bastard illness.
You are to me such an inspiration, more than you can think.
Myself, I am doing much better with the new schedule. Before on X 2 weeks, one week off. Very bad HF syndrome, very bad.
Now, one week, one week off. So much easier with same 3800 mg. Funny, its actually my first treatment, where I am counting the days.
Never did this before. Even though, I am doing very well, the one week off, is like a little mini-vacation.
Love to hear your stories Ladies,
Hugs from Montreal
Carol
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boo boo- the lump
Has been there for months but it’s grown and is bright red . I jus happened to look st it one day so no telling how long it’s been red. I haven’t had to shave my armpits in many years since my first round of chemo so I’m hoping it’s an ingrown hair but I don’t have that kind of luck. I had a bunch of lumps under the other armpit but since I started Xeloda they have gone away so this one is probably cancer related as well. I feel the only way to really know is to cut it out. Not looking forward to that, ouch!
Denny- Xeloda makes me tired too but nothing like Ibrance did. Ibrance was awful.
Hope everyone is having a great weekend
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wow, it is bright and sunny so gonna try to spend time outside, feet hurt but do not look so red as some days, hands, well same
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Hi ladies - I am rejoining you after a 5 1/2 month run on A-train and some head rads for skull/dura met. Just took my morning 2, and will do 3 in the evening. We are hoping for good results on this med. My TMs are the lowest they have been in a year. I am still working and hoping to start a new job this summer. Just back from NYC. Travel was ok, just go slow. I am taking tips on the best creams? My eyes are already dripping, what is best? I see sketchers in my future too. Let's get some long runs on this!
(()) Claire
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Claire, welcome back! I'm just back from a show in New Orleans. Wore sneakers as I had to stand for 6.5 hours every day. I'm paying for it now -- all sorts of sore muscles in my legs.
For cream I use Gold Bond Ultimate hand cream (on both my hands and feet). Second ingredient is urea, which is what you need. I've tried a couple others and they worked fine too but I like the feeling of this one.
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Has anyone had mixed results on TMs before? My cousins CEA has been steadily rising since last July (from 7+ to 9+), her CA153 has been dropping though and now it’s 19.86 (normal range is below 25). In addition, did any of your onc check CA19-9 for you? That number has been increasing steadily together with CEA. CA19-9 is for prancreatic cancer, not sure why her onc had that drawn.
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Kidman- the only one mt doctor ever checks is the Ca 27-29. Mine has fluctuated up and down 5-10 points at times. I tell myself it’s from dead cancer cells.
Well it’s a good thing my DH keeps track of my appointments. Was ready to go to my ultrasound appointment tomorrow and it’s actually this afternoon 😖.
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