All about Xeloda
Comments
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Mike - very good to know. Happy for you both.
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Yikes, goldie, I'm sorry you have to go through this hurricane worry. That must be so hard losing communications with your daughter. Let's hope she is back online soon.
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I will be joining you ladies on Friday. Just finished 5 rounds of A/C again. Hopefully this will keep my cancer under control. MO wants to start me at the max dose according to my body size which will be three pills in the morning and three at night. I don't know much about Xeloda so any advice would be greatly appreciated.
Thanks Diana.
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Dianarose- a quick response as I have to chase my kids around soon.
Each cycke will be different in the beginning.
Take with food
Ask fir s Tina uses Meds as you may need them
Be prepared for either constipation or diarrhea ( different people get different reactions)
Drink plenty of water
Try to take it easy on your hands and feet ( no extreme temperatures/ get off feet as much as possible/ wear gloves when doing dishes/find a cream with urea in it fir hands and feet)
Most importantly, if you don't feel good or have any questions,call your doctor. Don't be afraid to ask for a dose reduction or schedule change ( 7on 7 off or 14 on 7 off, or something else) you are the boss.
Good luck. I will have been on Xeloda for 5 years come December. It has helped a lot of people. May it work for you.
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Hi Everyone,
My name is Mary. I started on Xeloda two weeks ago after Ibrance and Faslodex failed very quickly. Diagnosed with mets in April. I only had two mets then but after my short stint on Ibrance have progressed quite a bit.
I finish my first two weeks tomorrow and have next week off. I'm on 2000/1500 mg each day. No gastrointestinal issues, but I've had terrible hfs. I've been barely able to walk for the past week and it is now on my hands. I have been very discouraged.
Does this get better on your week off? I see onc next week. I want to stay on as high a dose as I can (have 3 kids to raise), but I need to be able to take care of my family.
Thanks for any advice you can give. I've done all the creams, socks, ice, soaking, etc. Ugh.
Mary
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Welcome Mary. The only thing that's helped me is reduction in dosage, from 4,000 mg a day down to 3,000 mg a day. I've been on it since Dec. 2016 but the lower dose started early Feb. 2017. Just now I'm starting to get a more severe outbreak of HFS. On my own I've gone to 7 on 7 off. We will see if it's working next week as I have a PET scan.
I've been told to stay out of hot water, like in hot tubs and pools. I use my hot tub daily and pool at least a few times a week, so my increase in HFS could be my own fault.
Good luck to you. I wish you well.
Am
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Leftfoot- thanks for the advice. The hfs doesn't sound fun. Hubby does the dishes so I'm good there lol.
It's amazing that it's been almost five years for you. Gives me hope.
Do you mind me asking where your mets are. The majority of mine are in my belly. I do have some in my spine and skull but Xgeva seems to be keeping them at bay.
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Hi everyone,
My name is Jennie, last week I saw my oncologist who told me that I now have liver mets. I will be starting xeloda tomorrow.
I also am hoping for some advice on what to expect. My oncologist has told me that my hands and feet will need to moisturised daily and I may also have diarrhoea and nausea. I will be starting on 3 tablets morning and night initially.
Thanks for any advice
Jennie
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Dianarose! I'm encouraged that you are now being moved to this easier pill chemo. I have hope that you will have good QOL on this after going through so much cancer garbage. Leftfoot gave good advice which I will echo. Take care of your tummy, especially as you begin -- easy foods, have remedies on hand. Take the pills after a meal. Take care of your feet and hands -- avoid heat, friction, and pressure. Lotion. Stay in touch with the doctor or nurse about side effects.
Marylark, do get in touch with your doctor asap. From what I've learned, even a small change in schedule or dose can help a lot with hfs, while still being effective against the cancer. A dose of 3500 per day does seem to be on the high side, though some docs use a body surface calculation.
AmyQ, wow, do you love the hot tub that much?
Welcome to the X thread, Jennie. It's good your onc mentioned possible diarrhea and nausea so you can have remedies on hand, but please don't expect them as not everyone gets them. For my part I had some momentary hints of nausea during my first cycle, but then it seems my body adapted. Also once in a while I get a hint that I should eat the BRAT diet (bananas, rice, applesauce, toast) for a day or half-day to prevent diarrhea. Otherwise, somewhat tired but living my life. I use unscented foot lotion at bedtime, and hand lotion throughout the day (as I have done for years).
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Shetland- thanks for the advice!
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dianarose, definitely moisturizer those feet, whether you think you need to or not. hSF has a way of creeping up on you. I do get diarrhea and cramping, so I take lomitil a few times a week..totally helps. Some fatigue, which comes and goes, and isn't too terrible. Its relatively easy.
STefanie
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dianarose- I had mets to my brain (2) and liver ( full of tumors). Xeloda has kicked my cancers butt and I've pretty much been NED since I started in it.
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Marylark, there's no real indication that higher doses are much better than lower doses. So long as you're doing ok on the higher dose you're fine. But don't suffer. If you have problems ask for a lower dose.
Dianarose, welcome! I get blisters on my feet but not actual hfs (yet). I lotion and try to be careful about walking 2 miles in bad socks at the end of the cycle. LOL.
Jenny, welcome to you too!
Amy, I'm with you on the hot water. I love love hot water. The hotel I'm staying in has a lovely hot tub. I've already been in it twice.
Hope I haven't missed welcoming anyone new!
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These post are so encouraging! I hope I get the same results. I was ready to give up a few weeks ago. You ladies have given me hope, thank you!
Dealing with the side effects from Friday's A/C. I get this painful burning sensation on my skin. So glad I'm done with A/C!
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Hi Dianarose. I did AC during my initial treatment. Hang in there. In a week or so you will feel a lot better. Even though I have been a lurker I have held you in prayer during your recent difficulties.
pajim: I see the onc next week and will discuss a dose reduction. I cannot continue at this dose. I wanted to gut this one out since I had progressed so much on 3 months of Ibrance.
I start my week off today and pray that this clears up soon.
Mary
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Mary- thanks for caring and the prayers. I went down hill in three months while on Ibrance too.
Today is day three since A/C. Feeling exhausted and in a fog. Yesterday I couldn't remember my address. Scared me. Chemo brain hard at work.
Leftfoot- what is the dose you are on? NED is amazing!!!!
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Sheiland, thank you for your comment regards to my daughter.
LFF, aren't you the one that has been on X for 4 years? I will be on for 3 years come Feb.
My onc waiting to put me on Ibrance and Faslodex when X fails. For which I am very afraid of, since it really has failed so many within a few months.
For me, my week off was not the best, it was my first week back on that was the best. However, as stated before, I am doing 1 pill, 3x a day, no break. Have to wait until my next labs to see how that is working.
Blessings to all of us!
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Does Xeloda play havoc with the white and red cells and platelets?
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Dianarose. Hugs. I found a lot of my memory issues were just due to overwhelming exhaustion. It gets better. AC is quite an experience. Get plenty of rest, drink lots of water and do your best to eat well. If you can sit outside and breath some fresh air.
M
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Hi again Dianarose. My onc said it is not as hard on your red and white blood counts as Ibrance is. I will let you know Monday when I have my first bloodwork.
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It definitely lowered my wife's platelet counts. They kept telling us it was her spleen causing it. Her counts have tripled since she switched from xeloda to ibrance and letrozole.
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Hi Husband 11. My counts were awful on Ibrance so am hopeful they will be better on Xeloda. I guess we will see. I have been encouraged to see your wife is doing better.
Mary
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Forgot to ask about hair. So hoping it grows back.
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I was told that it has very little affect on the hair. It may thin a bit. I have only been through one cycle and have not lost any.
I did six months of taxol/AC my first go round. I finished in late September and was sporting a semi crew cut by Christmas. I was able to have a cute short hairstyle by mid February.
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I've got some hair on the top and back still hanging on . Couldn't bring myself to shave it this time. I did get s higher quality wig and people who don't know me can't tell. Just want some covering before winter. Gets dam cold here in Maine.
MO wants to start me off on the max dose. I'm a bit nervous about that.
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Off hormonal therapies and onto Xeloda, my hair has gotten a little thicker. Hairdresser confirms it. Better brows and lashes, too.
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Question follows.
Oncologist tomorrow. Rheumatologist today.
The high definition CT of chest showed part of my liver and the mets were apparent though I don
t know the uptake. That would be consistent with the pain I had on both sides and it did stop after the last cycle of Xeloda, so cancer dying hopefully. Also there ground glass opacities in left lung the report is trying to say was from breast cancer radiation - but the rads were in microscopic area just under right breast where the bronchial was severely compressed. And later in the large basin along neck and above collarbone. So I don't see how it can be from rads. Am hoping it is inflammation or infection and clears. Seems the upper right lobe on lung is no longer collapsed - yeah! after a year! And I can finally sleep well on my right side since August or so. Couldn't for a year.
Concerning news is that the right side of my heart is indeed enlarged. The factor of pulmonary hypertension is more probable. My denial is sloughing off - I see a cardiologist Wednesday to talk about dx that and proper drugs for it. I have a lot of questions.
Rheumatologist said the cough is from lupus and also the heart enlargement is probably affected by lupus.... not scleroderma since both lungs would be affected with scleroderma. But I could still have it due to the food stopping in esophagus from 2013 to 2015, then that stopped one day. The RNP lab result which shows mixed (unidentified but there) connective tissue disease (lupus included) was 671. It is supposed to be about 0 - 5. 8 is considered high. Last October mine was 8. He said it was to be taken seriously at 8. omg.
For the record - I told him I wouldn't be able to see the pulmonologist for a full month, his face was priceless - like WTH! REALLY! And he told me if I wanted a referral he could get me in within the week. And he did, Wednesday for comps and questions. I told him to get in to see a specialist can take months, truly.
Last Nov I had an ECHO and my heart was pretty fine, a little hypertension on the right side, just a little, my onc was thrilled w the report. And now this.
Since then I have been on Ibrance / Femara. End of Nov to mid-April or so. Then on Xeloda May to present.
QUESTION - Has anyone had or heard of enlarged heart from the cancer drugs or even the hormone targeted drugs? Personal experiences of others is what I am looking for.
Thanks.
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bluebird- I have heart issues caused by my cancer treatments. They mostly blame it on herceptin but I have been told that my initial treatment of AC made my heart more susceptible to heart issues while on targeted therapy. My issues were low ejection fraction, slight enlargement. I came close to being in congestive heart failure by their measures. I have been on a beta blocker and ace inhibitor since 2011. My heart function has returned to normal with time and by stopping all targeted therapies at this time.
I don't know about hormone treatments and their effects
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Dianarose- I have settled into a regular diode of 3500 mg; 3 pills in the am and 4 in the evening. Had been as high as 4000 and as low as 3000m
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Goldie- I started Xelida in Fecember of 2012 so almost to 5 years running with good old Madame X. Hoping it continues to treat me well.
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