Xeloda: I was on Ibrance and faslodex... - SHARE Metastatic ...

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Xeloda

tessibop2002 profile image
24 Replies

I was on Ibrance and faslodex for a year and it stopped working for me, my doctor just put me on Xeloda, one week on, one week off, just wondering if there are any bad side effects or if anyone on here is on it can you tell me what you think of it, any information would be helpful, thanks

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tessibop2002
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24 Replies
Kathleen1999 profile image
Kathleen1999

I was on Xeloda from 2002-2009. The side effects included some gastrointestinal issues which gradually disappeared as my system became accustomed to the drug. I lost six toenails permanently and had some neuropathy in my feet. Although the drug continued to be effective my new oncologist took me off of it to give my body a rest. Everyone has different reactions or side effects as you probably know.

When Faslodex ceases to work I will go back on Xeloda. Best wishes!

tessibop2002 profile image
tessibop2002 in reply to Kathleen1999

Thank you, the six toenails are scary, what about fingernails?

Epinto profile image
Epinto in reply to Kathleen1999

Hi is this drug an injection or an oral drug to replace the Ibrance?

tessibop2002 profile image
tessibop2002 in reply to Epinto

Its an oral drug, i dont know if it replaces Ibrance but it is what i was given when Ibrance stopped working for me, Ibrance worked great for me for one year

Epinto profile image
Epinto in reply to tessibop2002

Thanks. I am also on Ibrance and faslodex for one year now for breast ca with mets to the bone, hope u do well on the new medication and thank gd there r drugs to be given.

Annienny profile image
Annienny in reply to Kathleen1999

Lots of good advice already here! I was on the max dosage for me (5 pills in morning, 4 at night, one week on and one week off). I was on it for a year but wished I could have stayed on it longer because I tolerated it pretty well. I had to change to another treatment because of disease progression.

Staying moisturized and protecting yourself from the sun, reducing friction on hands and feet, carrying around anti-nausea and anti-diarrhea pills all were helpful to me. Also, keeping your dermatologist in the loop (mine is at Memorial Sloan Kettering, where I'm being treated, so that is helpful). I had a toenail infection and the toenail was lifting when I took a trip to San Francisco. I did a lot of hiking and walking uphill and that caused the toe problems (even while wearing good socks and footwear), so be careful with that.

Best of luck to you!

Kats3 profile image
Kats3

Hi tessibop2002,

How many mgs is your doctor putting you on each day? 3 500 mgs in am and 3 500 in pm is a lot but it's what's written on the manufacturer's instructions. Side effects usually cause burning or dryness of hands and feet with this dosage.

My doctor has put me on 2 pills in am and 2 in pm, total of 2,000 for the day. I take them for 2 weeks on and one week off now.

At one time I was put on 2 in am and 1 in pm for 3 1/2 days on and 3 1/2 days off. It all depends on how your Oncologist wants to prescribe them to you, and of course your tumor markers should be monitored to give him/ her an idea of whether the dosage is effective or not. I also did the one week on and one week off routine too.

I personally have liked and tolerated Xeloda very well. I may have to get off it though if my markers continue to climb. I've been on Xeloda for 2 years.

Don t be afraid of it. I was happy that it didn't cause stomach upset etc. I wish I could stay on it forever!

Let us know how you do with the Xeloda. It should help you. Best wishes. Kats3

tessibop2002 profile image
tessibop2002 in reply to Kats3

Kats3, I start with 2,000 a day, 2 pill in morning, 2 at night, one week on, one week off, then i go up to 3 pills in the morning and 3 at night, so 3,000 a day would be the norm, one week on, one week off, so your saying you didnt get nauseous or diarrhea, cuz thats what i read in the side effects and defiantly dont want that, thanks for your input, much appreciated, oh, btw, did you take it after a meal, it says thats what your suppose to do which is gonna make it hard for me to take the night time dose.

Kathleen1999 profile image
Kathleen1999

The fingernails were not affected ...thank God!

Kats3 profile image
Kats3

tessibop2002,

I didn't have stomach issues, just took the 2 pills after a light breakfast like pastry or even crackers. And then at night around 9-10 pm I had a snack, not really a meal, and took the other 2 pills. It didn't seem to affect anything.

Just have something in your stomach before you take the pills, even a yogurt or something small... a trail mix bar? I think if you have an empty stomach, that's not the greatest. But I was pleasantly surprised when I switched from Faslodex to Xeloda, and I had NO stomach issues for which I was so so happy about! Those stomach side effects that were listed on the paper didn't apply to me at all.

Good luck! Keep us posted! Kats3

Kathleen1999 profile image
Kathleen1999 in reply to Kats3

Kats3. I was on a much higher dose than you were. It has been so long. I think I took 3 in the AM and 4 in the evening. I was much younger then...the oncologist probably won't put me on that high a dose next time!

Kats3 profile image
Kats3

Kathleen,

You're right. You were on a high dose of Xeloda way back when. Now they're finding out that the dosages can be tweaked so that a person doesn't suffer all the harsh side effects.

My Oncologist said that the sign of a good Oncologist is one who can strike just the right balance of medicine to do its job, but not kill the patient! Funny, but true. That's what my Oncologist is doing with me. He doesn't go strictly by the book. He has a lot of experience prescribing these drugs. I trust his judgement.

We need to have Faith that our healers here on earth who were given their knowledge and expertise by a higher power, God, will help us as we navigate this disease. We can do our part by praying and following our regimines the best we can.

Good night everyone! Kats3

sabal profile image
sabal

I have not heard of Xeloda...wonder where all these names come from!!! Will wait to hear someone's reply. When you say "it stopped working for me" how did they determine that???

tessibop2002 profile image
tessibop2002 in reply to sabal

my tumor markers were getting higher and higher so they did a cat scan and saw something suspicious on my ovaries, i went and got them removed and it was breast cancer tissue on my ovaries, I found it odd that the rest of my breast cancer was stable, i have it in my lymph nodes in my chest wall and in my neck, and that all remained stable yet it spread to my ovaries, thats why they changed my treatment and supposedly this Xeloda has been around for a while, one woman who replied to me said she had been on it from 2002-2009

sabal profile image
sabal

Thanks

daf10 profile image
daf10 in reply to sabal

Xeloda (capecitabine) is a cancer medicine that interferes with the growth of cancer cells and slows their spread in the body. it is one of many drugs used in the treatment of metastatic breast cancer. Xeloda is usually taken twice per day. and is given in a 3-week treatment cycle. The recommended dose of XELODA is 1250 mg/m2 administered orally twice daily (morning and evening; equivalent to 2500 mg/m2 total daily dose) for 2 weeks followed by a 1-week rest period given as 3-week cycles

Most common side effects:

nausea, loss of appetite, eating much less than usual, vomiting (more than once in 24 hours);

severe diarrhea (more than 4 times per day, or during the night);

blisters or ulcers in your mouth, red or swollen gums, trouble swallowing;

pain, tenderness, redness, swelling, blistering, or peeling skin on your hands or feet;

dehydration symptoms - feeling very thirsty or hot, being unable to urinate, heavy sweating, or hot and dry skin;

low blood cell counts - fever or other flu symptoms, cough, skin sores, pale skin, easy bruising, unusual bleeding, feeling light-headed, rapid heart rate; or

severe skin reaction - fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

You know when the drug stops working when your scans show progression or your tumor markers rise

tessibop2002 profile image
tessibop2002 in reply to daf10

did you have all those symptoms Daf10? I read the side effects on chemocare.com and was just wondering what kind of side effects people that are on the drug have experienced?

daf10 profile image
daf10 in reply to tessibop2002

I wasn't on the drug but as a helpline coordinator the most common complaint that I have heard is hand foot syndrome and diarrhea

tessibop2002 profile image
tessibop2002 in reply to daf10

Thank you

I was on Letrozole for 3 years then my markers started rising and the small liver lesion got bigger so I was changed to Xeloda. To start with I was on 1000mg morning and 1000mg evening, 2 weeks on and one off and I was given a large tub of lanolin cream (just like milking salve but pink!) for hands and feet to try to avoid the common side effect of hand/foot syndrome. The first cycle I was very tired (but maybe also stressed by the "roller-coaster ride" we all go through) and suffered some rather unpleasant chest tightness - rather like bad reflux. Thereafter all went well. Two cycles in I increased to 1000mg morning and 1500mg evening and the liver lesion has continued to shrink. However, although my CA125 marker was going down, the CEA continued to rise and then on cycle 9 the CA125 went up too. CT, Nuclear bone and brain MRI scans later nothing showed up - except smaller liver lesion - but I went off the xeloda for 1 cycle to try to see if there was any other inflammatory or infectious problem. Nothing has shown up and although I was off treatment for a cycle the markers both dropped so am now back on again and feel better for feeling "at least I am doing something" - crazy life! Perhaps I am lucky or my oncologist has been very cautious with dosage but so far I have had very little in the way of side effects. Currently my finger tips go a bit numb as the day wears on and I am finding rough bits on my index fingers and my thumbs but nothing too wild and loads of cream applied. just stay off the hot water for washing up etc! As for the odd counts it seems a number of people have experienced anomalies like this on Xeloda

daf10 profile image
daf10

I have talk to a women who called into the SHARE helpline who had been on xeloda for several years. She was basically in remission but continued to take it in case of a recurrence She did suffer from hand/foot syndrome but coped with it using home remedies.

Hand and Foot Syndrome Coping Strategies:

Full-body skin exam; emphasis on palms, soles, prior to the start of Xeloda

with cold water.

The first and most important step is to notify your doctor right away if you notice any numbness, tingling, redness, peeling, swelling, or pain. Your doctor may stop the chemotherapy for a short period to allow the skin to heal, but in many cases, reducing the dose is enough to allow the skin to heal. Dose reduction or a break from therapy is the only thing proven to heal HFS, but some other strategies can help you deal with the discomfort or help HFS to heal faster.

Soaking the hands and/or feet in cold water or applying ice packs can relieve pain and tenderness. Use a bag of frozen peas or corn, as these can conform to your hand or foot. Do not keep the cold on for more than 15-20 minutes at a time, but you can alternate the ice on and off.

Continue to use lotions or moisturizers often, but applied gently.

Elevating the hands or feet may help decrease swelling.

Some doctors use vitamin B6 (50 to 150 milligrams per day) to help speed healing. Talk to your doctor before taking any vitamins.

An over the counter pain reliever, such as acetaminophen, may help with the discomfort. A topical pain reliever, in a cream or patch form, may also be used. Talk to your doctor before taking any medications.

If you develop blisters, do not break them as they can become infected.

If you develop a fever (temperature above 100.4), call your doctor right away.

Most importantly: Notify your doctor as soon as you notice any symptoms of HFS! Do not "wait and see" if the symptoms will improve on their own.

Exposure to heat such as saunas or direct sun.

Wearing constrictive footwear. Wear loose fitting clothing.

Excessive skin friction when applying lotions, during massages or during everyday tasks.

Vigorous exercises or activities that place undue stress on the hands and feet, especially during the first month.

MMMP profile image
MMMP

Starting my second year of xeloda- now on the on one week and off one week- 1500/1500. Seems to be the best for me right now- started off with 2000/2000 14 days - just about killed me- have been adjusting to keep me on track with my 15-3. Have tha hand and foot thing but now is my new normal - lots of lotions day and night. Fingers get tight and sore- but I still get my nails done every 3 weeks. Watch out in the sun- your skin tans fast- I have freckles and in just a shot time in the sun I look like I've been on vacation. See my doctor tomorrow- praying for good numbers.

tessibop2002 profile image
tessibop2002 in reply to MMMP

Thats exactly the same as me, this week i do 1000/1000 (because its the first week) then one week off, then after that 1500 am and 1500 pm, so a total of 3,000 a day, I just started today, do you have any other side effects other then the hand and foot thing?

MMMP profile image
MMMP in reply to tessibop2002

Had issues with nauseousness at first but than adjusted. Took zofran at first but now nothing - I live for my weeks off !!! No issues with diarrhea like the instructions talk about. Just taking it day by day and enjoying the nice weather- living life in a whole new way-

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