All about Xeloda
Comments
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Hi all and welcome to the new. X seems to work well with liver mets. I've been on X since Feb. 2015. For the last 3 weeks I've been doing 1 pill (500 mg) 3 x's a day, with no break. I don't have to eat before taking and it doesn't upset my stomach. TM's are the same as 6 weeks ago. Onc says I can stay on this and if they rise, then I will go back to 5 pills a day. I use a hemp salve that helps with my HFS, which has also improved since doing just 1 pill. My onc says that X will usually work for about a year, so he is impressed with how well I am doing. I find it odd how differently this drugs affect different people in how it attacks the cancer and it's SE's.
Wishing everyone much success with Madame X!
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I've ended up in the hospital. The diarrhea continued through my off week unabated so I broke down and took a huge amount of Imodium. On Monday I started getting severe abdominal pain. By Wednesday I couldn't handle the pain and was very concerned so I went to the ER. A cat scan revelealed a lot of intestinal inflammation. They were concerned about developing a blockage or perforation so they've kept me here on fluids and antibiotics just in case. No food until today. Still have diarrhea. The pain is a little better today. I want to go home, this is not how I want to spend my Labor Day weekend
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Minxie, popping in here since I'm starting Xeloda next week and so sad to see your post. I do hope you're on the way up and will be feeling better soon. This is quite enough. You need a break. This is not fair! I know it does no good to say so but I don't care. It's not fair and I'm really mad about it for you and for all of us.
Are there many others here with TNBC? What have your results been?
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Minxie, oh no! Just dang it. I hope you feel better soon.
Scwilly, welcome!
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Minxie , I'm so sorry. I hope they can get you feeling better and home soon. Hugs and prayers for a speedy recovery. Deanna
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They let me go home today. Was in the hospital since Wednesday. So happy to be home!
Kayborg, I hope I haven't scared you. This board shows most people do just fine on Xeloda. I was just unlucky.
They're going to test if I have that DPD deficiency thing. I'm supposed to go back on Xeloda Wednesday at a 1500 2x a day dose. I'll see what my intestines have to say that morning.
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So glad you're out of the hospital! Also glad you're feeling better. The lower dose might be much more tolerable. Crossing my fingers for you!!
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After reading about your week 3 or 4 (Deanna) and week 5 (Stefanie) episodes of foot peeling, I'm watching my feet closely here on my 5th cycle. I'm using a cream with urea on my week off, and a foot lotion on my weeks on. The cream with urea makes my feet feel hot, like the cream is keeping the heat in and making my feet sweaty, so using it on my week off is the compromise I came up with. I think the urea is supposed to be good for calloused areas?
Scwilly, welcome to the Xeloda thread. I'm liver-only, too, and have had very good results from X.
Deanna, it's good to hear your TMs dropped again. Interesting experiement. I'm doing something similar, enjoying my green tea mostly on my week off. So much is based on educated guesses.
Goldie, congrats on 2 1/2 years with X so far, and thank you for the encouragement!
Hi, Minxie. I'm glad to hear you got sprung from the hospital. It's good they are testing you for DPD deficiency. When I read your earlier post that was my first thought.
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My wife progressed on Xeloda after being on it for about 5 months. She even tried a higher dose but that did not work either. Her MO is prescribing Halaven to stop any explosion of tumor load in advance and try hormonals / targeted therapy once Halaven brings things under control. I feel frustrated that her stay on Xeloda wasn't for long but wishing you all a long and stable period on Xeloda. I will now move on to Halaven thread.
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Letmywife sorry your wife has had progression, I'm no longer on Xeloda but I read all the time. After Xeloda I'm on Abraxane now which is a taxol but with less se's maybe you can research it and keep it in mind if Halaven doesn't work or se's are too hard. Sending good vibes for Halaven to work.
Aurora
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Have been reading the forum for a few months and it seems to me a lot of people progress when on Xeloda. While a lot do just fine and recovery their stability as far as cancer goes. So it seems the patients need to be watched very closely for progression! And appts should not be delayed and scans and labs need to be asap. Ibrance was the same way. Is it like this for all treatments?
That said, I am requesting a full body PET CT next time. And CTC labs.
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hi folks! Just starting on Xeloda soon. Letrazole stopped working with mets to femur and ribs. Was on letrazole and faslodex for four years but alas all is limited. Ibrance plunked my platelets and wbc so that was out. Was going to try kisqali but letrazole pooped out too soon. So NOW after getting a rod in my femur and getting rads when that heals....We start with xeloda. You guys make it sound tolerable. Thanks for sharing your experiences! Love, Val
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Bluebird, yup, that's the game. Scan, treat, repeat. We may get a long time on a particular treatment or we may get a short time. Pick a card! It's a lousy game if you ask me.
I think the follow-up plan needs to be personalized according to the site of mets, the character of the cancer, etc. I typically get a PET/CT every 3 months, and labs CBC, CMP, CA 27.29 tumor marker monthly. Since my TMs have proven to be very accurate, I think I will be scanning less. Do ask your onc for details about how you are being followed.
Hello, Val. Nice to meet you.
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It IS a lousy game. One we have to play whether we want to or not.
Shetland, when I was stable I scanned every four months and we had just moved to every six when I had my first recurrence, so back to three. I hope you get longer between scans for a longer period of time than I.
I'm usually comfortable with 4 months apart , if TMs are stable.
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My last scan, March 2017 showed complete remission after being on Xeloda starting mid-December, 2016. I am thrilled, but oncologist wants to do scans every 3 months. I politely declined. I don't want to go looking for problems and I'd love to enjoy blissful remission for as long as possible. But I should probably be realistic and agree to another scan this month or at least before the year is over. I just hate the thought of possible progression, even though I don't have any indications.
I hope everyone is enjoying a wonderful Labor Day weekend. It was 86 in Minneapolis yesterday so we had an impromptu pool party with 6 grandchildren and 4 of our 6 children. These are the moments I live for. I hope you all have your moments...
Amy
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It sounds like we have had a similar experience, Stefanie. I suspect a reason my onc scanned every three months was that we are dealing with liver mets. When I had been NEAD for quite a while, she agreed to a four-month interval when I asked about scanning less often, but then my TMs started rising so I went back to the three-month interval. But those two years of correlating scans with TMs taught us to trust my TMs, so I won't be surprised if we scan less often as long as my TMs remain normal on Xeloda and I have no new symptoms. My onc always listens to me, and I defer to her experience. In other words, I will express a willingness to scan less for a while, but am willing to do them when she recommends. Amy, did your onc explain why he/she wanted to scan every three months? Did you discuss your desire for a break?
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ShetlandPony,
Most definitely! I explained why I wanted to enjoy remission for as long as possible which she understood. I see her in a few days so will see if she brings it up again.
Amy
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I love stories like AmyQ's! Thanks for staying on this board.
I have been on Xeloda since May and my scan in August was equivocal (no improvement and even a slight worsening in one area). My Dr said she wanted to keep me on Xeloda but up the dose. I started on 2000mg/day 7 days on/ 7 days off. I increased to 3000mg/day 7 days on/7 days off. I am hoping this will allow for signs of improvement on my next scan. Should I push for 14 days on/ 7 days off? I am tolerating the medicine quite well. No real side effects to date.
Thoughts?
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Valerie, welcome! I'm on cycle four and the only thing I worry about is walking too far on days 13 & 14 which seem to give me blisters.
Interesting what you all say about scans. My onc and I don't have a schedule. So long as markers are going down, no scans. If they start rising we wait a couple of months to be sure, then PET scan. They've been as much as a year apart. So far the markers have proven to be accurate. Another way to do this is not to scan unless you have symptoms (new pain, etc.).
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Hey Ladies,
Just have a quick question. Is there a combination that xeloda is taken with?
Thank you!
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pajim,
My tumor markers are not indicative of progression, in fact they're always within normal range even when cancer progressed to my liver so scan's are the only way we know what's happening.
Livnohope, not sure what you mean about a combination that xeloda is taken with...please explain so we might help answer.
Thanks
Amy
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Livn, most of women I know on X are are on Xeloda only, or possibly X with a bisphosphate for bones (xgeva or zometa) so if anyone is in X in combination, they can chime in. Off hand I believe it's a stand alone.
Stefanie
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Dear Members,
In view of this thread that focuses on Xeloda we wonder if you might be willing to offer some feedback on the nature of your relationship with your doctor. We posted some questions on this topic as we seek to create content about this very important issue. If you are interested you can find the thread on Patient Doctor Relationships here. We appreciate your wisdom and shared experiences always. The Mods
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Mods - will do that soon.
Reading and saying hello. Having a brain CT or MRI along with a PET CT soon. New oncologist said yes when I asked this morning for it to be set up.
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Ok, Bluebird. May your wait be short and your scan results be boring.
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dear cita, both plans work, your doc decides based on your specific condition.
Dear liv, I started off on April 2012 X with Taxotere, after 8 cycles of tax, continued with X alone till June 2017!!!!!
Still on X with Tax for some time, after Navelbine failed miserably.
TMs backed down at last! It took 4 tax cycles supporting X. Watch out for tumor flare the first few couple of cycles before deciding that a chemo isn't working. Experience talking
Hugs,
Ebr
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AmyQ, I will be on X for 3 years come Feb. My onc says he wants to treat the patient. We watch my TM's which is a pretty good indicator me and how I feel, pain ect. He says it's my ship and I'm the captain. My last scans were in Dec. 2016. He will probably order more this Dec. The only symptoms I have are SE's from X, none with the cancer. He also wanted me to do labs every 3 weeks, I said I will do them every 6 weeks, not going to live my life 3 weeks at a time. He was ok with that too. My mets are in the bone. Also on Xgeva every month. I also do MMJ (medical marijuana)
Mods I will be happy to chime in, but not for a bit. I'm away from home and my daughter has been hit with hurricane Irma and no contact with her in over 36 hours. But she is ALIVE!
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Something I found after much searching. A Japanese study of Xeloda showed that of triple negative women, where Xeloda was effective, they had a 5 year survival rate of 79%. I would show a link to it but I can't seem to find it anymore.
Wife doing well on 7 days on and 7 off with 3 pills in the morning and 2 in evening. Still the usual H&F plus aversion to bright lights and the sun.
Mike W.
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Mike, that Japanese study is here: http://www.nejm.org/doi/full/10.1056/NEJMoa1612645
Stage IV ladies were excluded from the study.
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Thanks pjim. Oh well, I'm back being scared for my Stage 4 Triple Negative wife. So far the Xeloda is working on her many spinal mets. Last PET/CT scan showed most gone with the rest showing a reduced SUV.
Mike W.
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