All about Xeloda
Comments
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Goldie - The Ibrance is not a chemo drug, it does something different and the cancer dies. Read up bcz I cannot explain. I had mixed response to it, the liver mets went away. The lymph node masses grew. And when it quit working on lymph node masses they grew like dust bunnies all over the place. Oh happy day, I could say now that they were singing and partying from figuring out how to get around the Ibrance / Femara combo. The liver mets went all the way away but once off Ibrance the liver mets came back w lesions. When you go on it you must be sure they are doing scans and see if it stops. When it stops the party begins, and not your party. Sorry, tongue-in-cheek but it is more like your going away party. Sorry. So be sure they are watching you and doing more than labs.
Karina - I have been on Faslodex/Arimidex then Ibrance/Femara and the Xeloda from April to present. I wish the Xeloda had been started way back June 2016. I think I could have skipped a lot of turmoil, suffering and radiation. The best to you. I see you have been through this before. What were your txs last time?
Mary and others on the subject of runny stuff. I did not put two and two together. I have had what was like total sinus drainage but not the runny nose. Maybe it is the de? I am now on a sinus spray and have Claritin. Will play w it and see if something more helps, like the two together.
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Thanks Bluebird. My onc is more about treating "me" and not so much symptoms, mainly because I don't have any! I had scans done last December. I have no symptoms what so ever. No pain at all anywhere. The only things I have are SE's from the X. Onc will probably do scan this December, just to keep an eye on things. He knows that labs are not always reliable, but because I have no pain or symptoms, he's not one to send me for scans every 3 months, at least not yet. Not looking forward to Ibrance and pretty sure when that fails I will give in. Just don't think I want to do IV chemo again.
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Ibrance is a CDK 4/6 inhibitor. Is basically prevents mbc cells from using a route they frequently utilize to get around either Letrozole or Faslodex. It's not technically a chemo, although some of the SEs (i.e. fatigue, nausea, thinning hair, nail damage) may be similar to chemo for some. And while it's true a percentage of women don't stay on it very long, I think the majority do -- and much longer than Letrozole alone. With Faslodex, per research stats, the difference in progression free survival is not quite as impressive. Even so, I was on Faslodex w/Ibrance for 19 months, which is pretty typical, and many women in the CDK 4/6 Inhibitor group on FB are on their 23rd, etc. month. So don't rule it out, Goldie, unless you're sure it's not for you for some reason not clear here. I would go back to it in a heartbeat (over Xeloda) if it would continue to work for me.
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Bluebird thank you .the informaton in my signature is misleading , will try to amend it. I have been diagnosed with mets only recently and xeloda is my first chemo for mbc.
Day three no se yet touch wood, i know they will come though😡.
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I was first diagnosed 13 years ago today. It's been one hell of a roller coaster ride! Unfortunately I know there is only one way off so I guess I'll just buckle up because I'm not ready for that yet.
I am having sinus issues too. Thought it was allergies.
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DLB, I won't rule out Ibrance, it's the IV chemo I may rule out when the time comes. Just not sure. I did Faslodex, it didn't work for me. Now that was an easy treatment!
Diana, def. a roller coaster ride indeed. I too will buckle up!
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Dianarose,
Well...here's the longer version of my situation. When the aromatase inhibitors stopped working for me, the first thing we wanted to try was Taxol I had gotten through it wonderfully years ago (was first dx'd when I was 36, came back at 47, I'm almost 51 now.) So, I got a port put in, took two treatments, then developed a high fever and became septic. Was hospitalized 5 days and they decided the port was the culprit, out it came. I had a temporary, "midline" (similar to a PICC line) put in for IV antibiotics and then, when attempting treatment #3, I had a severe reaction, so at that point I just told the oncologist I didn't want to continue that route, how bout doing Xeloda. So, all that to say that I only had 2 full and a tiny bit of a 3rd Taxol tx (treatment.) This time around, unlike 13 years ago, I did NOT shave my head and all of my hair did NOT fall out, but about 90% of it did, so I just had the rest cut down really short. I hated the feeling of stubble when having it shaved in my 30's. It made my head so sore, especially when it would stick like velcro to my pillow at night and then I'd turn my head and it felt like the little hairs were being ripped out. So...all that extremely LONG explanation (sorry) just to say my situation was a little different, but from what I could tell, the new hairs took probably about 2 months to grow enough that I could see them and then, when they got about an inch long, I had the rest of it trimmed down level with those new ones and it is still SO short. I definiltey think it is the Xeloda because it grew back much faster in my 30's (and not cut due to age, it was fairly fast growing before starting the Xeloda. Have you noticed your fingernails growing more slowly as well? I have. Finally they seem to be picking up the pace a bit. Sorry for makinng this a novel. Praying right now for your hair to return!
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Mary- thanks for sharing that. Just yesterday it's starting to feel like maybesome fuzz in the back. You are right about the nails too. Hadn't paid much attention to it.
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Dianarose: YEAH!
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My labs were the best they have been in well over a year today! Hemoglobin 10.9, white 7, platelets 246 and tumor marker down from 121 to 93. Hurray Xeloda!!
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That is great new Dianarose! Thanks for sharing that with us. You are in my prayers.
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Almost a year ago on a Friday I was told to get my affairs in order. MO didn't know how much time I had. She truly saved my life. It's a miracle I'm still here. Feeling extremely blessed today 🤗
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Just curious of when any of you got the hand and foot syndrome? My MO said if it was going to happen it probably would have by now. I have two days left of my second cycle
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Diana, I hope you don’t get it, but mine didn’t appear until the third cycle and then got progressively worse with each cycle. I was on 3000mgs 2 weeks on 1 off. I am switching to 2500mgs one week on, one off. I’m hoping that helps with the SEs. I hope you are lucky. Please treat them profilactically.
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Yay Dianarose. Wonderful news! You have needed some good results!
Re hfs. Mine started about 5 days in in the first cycle. My feet were terrible. Second cycle abour 4 days in my hands started going. By the end of cycle 2 I could hardly use my hands and both hands and feet started peeling. I was in 3500/day 2 weeks on 1 off. My MO wanted to dose reduce after cycle 1. I wanted to gut it out to try to get as much early punch as I could. She was right and I was foolish. I had 2 weeks off before restarting and am now on 3000/day 1 week on 1 week off. I am doing much better. Both hands and feet are still peeling from the initial two cycles and my hands are a little sore but I can function. I'm hoping to be able to resume exercise walking soon.
I would take care of you hands and feet just in case. The MO's pharmacist recommended Amlactin foot therapy cream. She postulates that the foot problems could result from the seeping chemo getting caught underneath foot calluses causing terrible pain (I could hardly walk it was so bad). I have used it religiously and my feet have gotten so much better. No more callouses and no more foot pain.
I'm so glad you are having good results! My MO doesn't do markers so I have to wait until January for scans. I hope it works for me.
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Hi Everyone.
It looks like tomorrow I will be joining your merry band. Some months back I thought this might be in the cards but we gave Anastrozole a bit more time. Unfortunately it has now progressed in my bones and into my abdominal cavity. Time for chemo to beat it back! I’ll need to catch up on the 900 posts since I last stopped by.
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Sadiesservant, I too have just started Xeloda. Today is day 4. The only really noticeable SE is exhaustion. Yesterday was rough but I plowed through. Here is hoping we both get an easy and long time on this treatment.
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Dianarose, Yeah!!!!
Sadiesservant, NO1-2NV, welcome!
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Sadie - welcome back. Tongue-in-cheek. Xeloda ahs worked well for me on lymph node masses. NEAD now. Liver, another story, another tx needed.
Dianarose - don't give HFS a chance to become a part of your life, use a healing salve each day at least once. It can happen at any time.
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Dianarose my h/f syndrome started the day I started X in February of this year. It's nasty to say the least. Good luck with everything and God bles
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Hello All, I've been reading this thread for awhile now, and I appreciate all the good information here. I will officially start Xeloda this week. What doses are most of you on?
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I am on 3 pills twice a dayi.i
So far no foot probs but it'si only day 5 of the 2nd cycle. The worst thini
g I am having is dry eyes. I hate it and hope I can get it reduc
Ied.
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Lindalou, on this thread I've seen doses from 1500 a day no break to 4000 a day 14/7. I believe the 'standard' dose is 3000 a day 14/7 but all oncs and cancer centers are different. I'm on 2500 a day -- we started low on purpose (I'm traveling a lot this semester).
Welcome, BTW. Except for the occasional blisters on my feet I find this a very easy med. Though I will say the blisters are annoying.
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Hi Lindalou. I'm not sure how to assess dose as it depends on your weight (related to surface area). I take 1650 mg twice a day - 14 days on and 7 days off. Based on my weight (which has dropped quite a bit since last December due to pleural effusion) I think that approaches the 4,000 that pajim mentioned.
So far (recognizing I am only on day 3) the med has been kind to me. No nausea, no vomiting, no diarrhea and no mouth sores although I expect that this might come later in the cycle. I am trying to use Udderly Smooth to help stave off any issues with HFS but it's challenging. I hate stuff on my hands! No numbness or tingling so far but it's too early to assess.
Pat
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I think it was this thread that I mentioned my side effect of dry eyes and a few said they also had it. I wanted to let you know I read about putting coconut oil in them (only at bedtime due to blurry) and it worked so well I did not use any drops at all today! Much better than systane which is the only drop I've tried so far. It also helped with they eyelids because when my eyes bother me it seems like the lids get so wrinkly and ugly! Just rub it all around the eye and kind of touch the eyeball a little and the inner lids with it. The right eye still felt grainy so I put a little blob of it in the bottom lid and massaged it around. It melts instantly, no sting at all, just relief!
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Lindalou - Right now I am taking 2 at noon and 4 at midnight. 1000 and 2000. 7 - 10 days on and 7 days off. I was no evidence of active disease after 7 mo. Perhaps sooner but no scan until Oct 2. Except of course for the liver lesions which is a cancer that Xeloda did not stop - will know what it is soon. But the rest is "gone" enough.
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Lindalou, I am on 3000 mg per day....3 tabs in the morning and 3 in the evening. My schedule is 7 days on and 7 off. In speaking with the oncology pharmacists the 7/7 seems to be a new acceptable standard.
Today is day 7 of the first cycle. So far so good. Next scans is due in November.
Bluebird...please keep us posted.
Hugs to all.
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Been on X for 3 years, all pills are 500 mg. I started out on 7 a day, couldn't do it, dropped to 4 a day, then to 5 and then up to 6.
Then tried 7 days on/7 days off, either 5 or 6 pills, don't remember. That didn't work for me. Currently, for almost 3 months now, I'm doing 1 pill, 3 times a day, with no break. H/F still a problem, TM's went down some. Def. an easy regimen. Don't even have to eat when taking only 1 pill at a time. We are heading for a little out of state visit, I think I will take a week off, onc doesn't have a problem with that. I think my body can use the break.
The bottoms of my feet are the worst. I have one split on my left foot, outer edge/bottom that feels like a paper cut. Lots of peeling and cracking, but that one hurts the most and dang if it just won't heal!
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goldie, have you tried taping a split aloe Vera leaf onto your feet in the evening prior to bed and then pulling on a man's size sox over the whole thing? I had an IR recommend this method a few years back when I was receiving IMRT. Not sure it would work but it might be worth a try.
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Day 7 with X, 7 to go. I am having 4000 dosage. Have no se yet other than nausea, but that is easily controled.
I am having no improvement either with my general wellbeing and still spend most of the time in bed. Severe sob with a little movement, fatigued and do still get temperature up to 38 celcius in the evening, even though have finished the antibiotics for chest infection.
I am so scared this is the beginnng of the end 😟.
Has anyone felt so ill before starting X and how long it took you to notice some improvement?
Thank you.
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