All about Xeloda
Comments
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I'm so sorry Diana, this damned disease! However, I am very grateful that I have no pain what so ever, other than the hands and feet from the Madame! 4 years at stage IV.
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goldie, 4 years at stage 4, to me that means you are a strong lady!
Think i will do a little gym stuff,later all
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I’ve been at least 6 Years stage IV. Not giving up yet. Too stubborn lo
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hi ladies, just had my first 3 months scans on X. Dont get results until next week. So nervous and unsettled to see if its working. I know its normal but its still never easy is it!
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Lilly, I have my blood done at Sanora Quest, I have an account there, and I can see my lab reports the next day. Is that an option for you? I usually get the results before my doctor!
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I am 16 years at Stage 4 and currently NED.
Good luck, dianarose!
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Denny- you are amazing! You go girl!!!
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Love to hear the longevity info! I am only 8 months into my official Stage IV diagnosis but I was pretty sure about it a few months earlier. I hope we all achieve such awesome stats!
I will be joining you ladies tomorrow on X. It is supposed to be delivered today. PET showed progression of all liver mets 😡after 5 months on Verzenio. I am bummed. I hope Madame X will be the one that works for me. Thank you all for your helpful advice for the hands and feet.
Donna
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Surgeons office called and said it was questionable if they got clean margins. What the hell kind of answer is that. Either you did or didn’t! Confused and upset
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Aw Diana, that sucks. Sounds like the pathologists are either (a) nuts or (b) covering their tushies. My guess is they're arguing about exactly what constitutes 'clean' margins. Maybe they need to so more slices?
Hang in there.
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Was super dizzy today. Does anyone have this while on Xeloda. Maybe it’s anxiety. Too much stress lately
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Dianarose,
I get a kinda "heady" dizziness. It's not like the room spinning or I'm going to faint type. I hate it though and I'm trying to determine if I'm more dizzy in tha am when I take 3 pills as opposed to the evening when I take 2. I could flip flop 2 in a mand 3 at night but I think Madame is messing with my sleep.
That clean margins biz is super f'd up.
Lisa
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Dianna, I got a bunch of "I thinks" too. One being clear margins, the other was "I thought I took more nodes, but there were only 2", and both were cancerous. I was getting ready to wheeled in the operating room and surgeoun came in and asked me "do you want MX or lumpectomy?" Are F'ing kidding me?
Denny, stage IV AND NED! Amazing girl. You must often wonder, do I even have cancer? I have said that to my onc on occasion, cuz I have no symptomes, except from X.
I'm going to take a 2-3 week break from X. My hands and feet hurt so bad. My finger tips on thumbs, first finger and middle finger feel like they are raw, they aren't, but the splits and peeling make it feel that way. Right heel is bad and then bottom of the foot, just below pinkie toe. My markers may rise, but I need this break. I'm just worried that after the break, the H/F will just continue where it left off
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Dianarose, hang in there! It must be very stressful to wait for them to figure out the clear margins. Hopefully you will get some good news soon! How long have you been on X? Is dizziness a side effect? I hope it improves for you.
Goldie this is my nightmare....that I will have significant problems with my feet. I am only on day 2, so I won't know for a while. Right now I am taking 4 in the morning and 3 in the evening. The good news is that I already feel better from the nausea and diarrhea that plagued me on Verzenio. I guess I didn't realize how bad it was until I am not experiencing it. I don't feel like I have to be right next to a bathroom 24/7 which is a big QOL improvement already! Yay!
Donna
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Donna, I did not have the severe problem with the hands and feet at the beginning. I don't recall when it started, but I'm thinking a year or more into the treatment. I take 5 pills a day, can't tolerate any more than that. I am afraid of taking the time off, but really need to. I used to get some relief towards the end of my week off and beginning of a new cycle. Not anymore. Leaving for MI in the morning, my mom has been put on hospice and is now in a nursing home, end stage copd. I'm going to clean out her house. The bank owns it, so we need to have a sale and get personal stuff out of there.
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Goldie, I'm so sorry about your Mom.
Don't worry about taking an extra week or two off. If your QOL is not good, and it sounds like that's so, then you need to repair that. My onc is all for feeling good and doing whatever that takes. Maybe you should try a 10-11 cycle or something like that.
Last visit when I told my MO this was getting a little difficult (not hard, just a little) he was all full of strategies to make that better. "Stop when it gets bad" "go to 7/7" I think if I went to 7/7 I'd need to go up to 3000/day from the 2500 I'm currently on.
I hope your trip is not overly stressful and you can rest your hands and feet. Also hope that your Mom is at peace.
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Pajim, my QOL is fine, it's my mom.. Just need to get things in order for her. I have done all kinds of doses, 7/7, 1 pill 3x's a day with no break, and the 2/1. I have no pain at all all, just the h/f crap!
Thank you for your concern! I don't know what I would do without this site. I will only leave when the good Lord takes me!
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Thanks ladies!
Sorry about your Mom, Goldie. Hope thing get better for you. I am only on 2,000 a day, 7 on and 7 off. Not doing too bad right now. Just finished cycle 6.
For those of you who are dizzy-check your BP!!! I was on BP meds, but Xeloda is keeping it stable. So I don't need the meds any more.
Before I figured this out, my BP went down to 69/43 after taking my BP meds. Ergo-extreme dizziness.
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Sorry about your Mom Goldie. How wonderful that you can be with her.
Since I am only on day 2, and just started reading this board, I had no idea that my dose is so high compared to what some of you are taking. I am on 3,500 per day, 2 on, 1 off. The MO told me she prescribed the dose for my weight, which is 113. How does that sound to you all? Also, I am leaving for a trip on June 10 and not back till July 10. She felt that it was ok to go ahead and start, even though I will be across the country. I can be in frequent touch with her via computer, but I sure hope I don't get any bad SEs while I'm away.
Donna
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Goldie- so sorry about your mom. It's a lot to deal with without being sick.
Denny- I'm not on any blood pressure pills. I'm wondering if mysugar might get low.
Donna- that does seem high for your weight. I think I was around 125 when I started. I'm on 3000 a day. Now I'm up to 134. Never thought chemo would make me gain weight.
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7 pills a day, I could not and would not tolerate. I had double over cramps and explosive diarrhea. Only did that for one cycle. Next cycle was dropped to 6 pills. I started getting a rash on most of my body, itched like crazy. Dropped to 4 a day and eventually upped it to 5 pills.
Thank you all for the kind words regarding my mom. I hope she goes soon, to be with our Lord. It's very hard to watch her in this condition.
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Donna, that's a lot of Xeloda. What happened here is your doctor read the label and prescribed what the label calls for. My onc says no one tolerates that, so if you can, my hat is off to you!
I weigh 190 (started this drug at 180) and take only 2500. That's plenty. Day 13 today which means the second of four days of diarrhea. Sigh. Hands and feet are good this time, even with all the golf I've been playing.
Goldie, safe travels.
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hi all,
I started taking 3000mg of Xeloda today and I need your help with the first issue I'm encountering.
I took 3 pills tonight around 5 pm with dinner, that means that I should take the next 3 at 5am with food, which is highly unlikely. I would have to eat dinner at 9 pm to match a 9 am breakfast, but I also don't like to eat too late at night.
What should Ido?
Thanks!
Miao
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mine are not 12 hours apart. I even have to set a reminder to take my pills after dinner. My stomach would wake me if I didn't have enough In it when I took the pills.
I dropped from 7 initially to now 2 a day with no break. Two rounds of clean scans.
I was supposed to get a vacation break but started early with a fever break. My DD says my fingers feel like squishy tape. My fingertips are so swollen that fine motor skills are limited. No real peeling since first time.
I see MO on Thursday. Will be interesting to see what he does with my dosing. I'd like to be on it for a very long time. I haven't found a hack for the low mood and energy. I think it's a direct correlation to low blood counts. Also want to make sure continuous swelling doesn't leave meopen for damage/neuropathy.
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hmm I take after lunch and after dinner. I told my dr. And also my pharmacist and they didn't say I was doing wron
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I think it’s more important for you to be consistent with when you take the Zxrloda than for it to be 12 hours apart. I’ve been on it fir over 5 years and never dialed in an every 12 hour schedule. I try to take mine between 7-9 am and again between 6-9 pm. 4 kids busy schedules makes it near impossible for me to be more exact.
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I aim to take my X pills at 9:30 am and 8:30 pm. That way they are fairly evenly spaced, and I can get 13 hours of overnight fasting, which is anti-cancer. I eat dinner in two installments, around 6:00 and 8:30 pm so I get enough food with the pills. This is my ideal goal, but I don’’t stress about it. I have been taking two pills in the morning and three at night since cancer is more active at night, and I figured I could sleep through any minor nausea.
As far as dosing, I started with 2500 mg. After a year my onc has told me I can play with the dose and/or weekly schedule as needed to mitigate hfs. I have chosen to take 2000 mg for a while since we are hoping I can stay on X a long time. I figure my body needs to be able to cope, and I have been quite tired lately. I will take a two-week break at vacation time, instead of the usual 2 weeks on 1 week off.
My onc points out that the trials look for the maximum tolerated dose. She is sort of horrified by the severity of hfs some people endure on too high a dose and believes in lowering it.
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thank you all for sharing your valuable experience and successful outcome on X. I too hope to be on it for a very long time. I'm so relieved and grateful to be able to count on your invaluable help
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Hi Ladies,
Its been since a few months now that I am on X. Since my doc changed me from 2 weeks on one week off to one week on one week off, I feel sooo much better. No H/F Syndrome anymore.
Its just that I have pain since I started this medication. Not too bad pain, but still pain, basically everywhere in my lower body. My feet, my legs mostly. Its bothering me, so I take daily painkillers.
I am worried about those painkillers, since i take them daily. Its like I depend on those pain medication.
Any feedback would be nice.
Have a wonderful day. Best, Carol
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Hello Mamita,
Like you, I used to suffer from bone aches and pains and took Tylenol's on a regular basis.
I was initially prescribed Oxicodone, which has to be taken every six hours, and caused major constipation.
When I complained, my palliative care specialist prescribed 12.5mg Fentanyl patches that have to be replaced every 3 days. I have found them to be 80% effective in controlling my pains, no side effects to complain about and no addiction problem.
A few months ago, I forgot to replace the patch, and got off fentanyl for 5 months. I have just started using it again because my aches have returned upon progression.
I believe the pain we feel is caused by the lactic acid that the cancer cells produce.
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