All about Xeloda
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Thank you Dorimak!
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Thank you, Dorimak. I'm mostly at home so using soap & water, but kept sanitizer in my car. I ran out, but maybe I won't replenish it now.
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I’m so glad this is working for all of you! I was hoping for the same but it’s just not happening. My scan last week showed not only progression but possible soft tissue mets. I’m talking to my MO tomorrow to see what he’s recommending for the next treatment and I already have a referral for a second opinion. He talked before about adding Ixempra if the Xeloda didn’t work on its own but I’d like to hear a second opinion on what’s available. Just wishing something would work as I’m running out of options
As far as the dry hands, I keep sanitizing wipes in the car and have some solid lotion I use after. After washing hands at home I use a dab of lotion. I have eczema on my palms (thanks, tecentriq) and keeping my hands moisturized keeps them from breaking out as often. Putting on lotion every time I wash my hands is a hard habit to get into but saving a pump lotion at every sink helps.
For those of you suffering with HFS, I read that people with HFS have a better response to treatment. I’ve had almost none, just some pain in the soles of my feet and my cuticles drying out. 😕
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Hopefully your onc will reduce your dose. The H/F is usually worse on your week off.
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Denny123, that's interesting about H/F being worse on week off. Today's day 14 for me, 1st cycle, and now my feet are feeling a little wonky, so maybe it's starting for me. Got my urea cream and booties today, so I'm ready.
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Hi folks,
I haven't posted anywhere on this site for quite awhile. It is my first time on this thread. I was diagnosed Stage IV from the get go a decade ago in 2010. I had an amazing run on endocrine therapy but my recent scan shows progression. I was in the hospital with anemia and an infection about a week ago but my bloodwork is looking good for me to finally start on my first Chemo drug, Xeloda obviously, this coming Monday.
I had a newbie Xeloda question. I was prescribed Prochlorperazine Maleate (Compazine) for nausea. My chemo pharmacist recommended taking this preemptively prior to taking my Xeloda dose. My oncologist recommended seeing how it goes first and only taking it if needed or at the evening meal because the drug knocks you out / makes you tired. I am not sure which approach to follow. I am still working and actually have a day full of multiple zooms scheduled for Tuesday (2nd day of new treatment).
Do you find nausea to be a big problem with Xeloda?
How tired does the anti nausea medication make you?
How did everyones first week on Xeloda go? Any recommendations?
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Hi folks,
I haven't posted anywhere on this site for quite awhile. It is my first time on this thread. I was diagnosed Stage IV from the get go a decade ago in 2010. I had an amazing run on endocrine therapy but my recent scan shows progression. I was in the hospital with anemia and an infection about a week ago but my bloodwork is looking good for me to finally start on my first Chemo drug, Xeloda obviously, this coming Monday.
I had a newbie Xeloda question. I was prescribed Prochlorperazine Maleate (Compazine) for nausea. My chemo pharmacist recommended taking this preemptively prior to taking my Xeloda dose. My oncologist recommended seeing how it goes first and only taking it if needed or at the evening meal because the drug knocks you out / makes you tired. I am not sure which approach to follow. I am still working and actually have a day full of multiple zooms scheduled for Tuesday (2nd day of new treatment).
Do you find nausea to be a big problem with Xeloda?
How tired does the anti nausea medication make you?
How did everyones first week on Xeloda go? Any recommendations?
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Just-Sue- I got that medication with my first cycle too and decided not to take it due to extreme fatigue it causes and other side effects- I decided I would use ginger (many forms of it from capsules, chews, tea etc). I had no problems with nausea- did have fatigue though - so my advice would be not to take it prophylactically.
My HFS is pretty non existent on the 2000 mg per day- was terrible on 2500.
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Just-Sue - My wife Liz did the same as Nkb, just ginger regularly for nausea. The nausea wasn't eliminated but it came from time to time and was tolerable. Her dose was 3300mg daily 14/7.
Grant.
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Thanks for the input. They are starting me at 4000 mg per day!
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Susan - The onc started Liz at 3600mg/day and lowered her dose around the 3-4 cycle to 3300mg/day. She had a little bit of redness on her hands which prompted lowering her dose.
Liz stayed on 3300mg for the next 17 months. The onc said she had the best Xeloda hands she has ever seen!
Grant.
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Just_Sue, My onc prescribed Zofran instead of Compazine and it works fine for me. I only take it when needed but my nausea is minimal so far. I also respond well to eating crackers if needed...the ole pregnancy trick. My first week was rocky only because I have GERD and needed to figure out the antacid issue, but I did take the Zofran a few times. I am on my week off after two cycles of 3500 but will ask for a dose reduction due to some diarrhea and dizzy spells. I have minimal HFS so far.
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I start my first cycle of xeloda tomorrow morning; 800 in the morning, same again at night. [14 days on, 7 days rest]
The oncologist says he likes to start slowly ,hopefully with few side effects, but getting them under control before upping the dose on the following cycles. I was given aveeno cream- dry skin, loperamide - diarrhoea, metaclopramide -nausea and a mouthwash-dry mouth. The pharmacist said everyone is different and not to do/take anything until I needed it.
It looks as if i will be having a covid 19 test at the same time as the 3 weekly blood tests. I had the first one on Tuesday and it was not as bad as I feared. I have a strong gag reflex and I did gag, but the nurse doing the test said "That's it" and pulled the stick out immediately. I hardly felt it up my nose. Not pleasant but bearable, thank goodness.
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Just-Sue- I am only on 2,000 with no nausea. Just wait to see how your feel. Compazine does make you drowsy, so Zofran might be better.
Actually, I like Emetrol the best-it is OTC at Walmart or any drug store.
Denny10-I like that dose of 1,600! I had purchased a large bottle of Immodium, but I have constipation with X.
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denny 123, that's interesting, I had constipation with Ibrance, I wont get rid of my stockpile of prunes just yet , in case l need it with X.
Just_ Sue, good luck starting X on Monday and all those zoom meetings Tuesday. l am on day 2 of my first cycle , not a problem today so far.I hope its the same for you.
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Just-Sue, I am on 4000 mg a day, too, 14/7, and finished my first cycle a few days ago. So far, I've done pretty well with mostly belching and a little reflux. On a couple days, I did experience some nausea at night and took a Zofran each time. Hearing Comprazine causes drowsiness, I might take that next time for any nighttime nausea. Day 13, I experienced a little redness and soreness around the outside edges of the balls of my feet, but Udderly Smooth urea cream has helped greatly. I'm on my off-week, but yesterday noticed a blister on my lower lip and my nostrils have been very dry the last few days. I hope Madame X treats you well.
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Bliss58, pleased to hear your first cycle of X passed without too many horrid side effects, it gives us other newbies some hope. I was given lots of warnings about s.e.'s and it can feel rather scary. Thanks.
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I had my doctor phone appt this morning and it went well although it did seem rushed. But we communicated what was needed and I am satisfied with the outcome. We will reduce my tx by 500mg to see if it helps and will scan early September for the first time since starting on X. We spent the better part of the time on a diarrhea/constipation discussion and perhaps trying Compazine instead of Zofran. She wants an in-person visit next time. I will say a phone visit is sure a lot easier than getting up, showering, eating, driving to hospital, going through all the Covid pre stuff, getting checked in, waiting, visit, then driving home again and sanitizing myself. My visit this morning was over and done in 15 minutes and I was enjoying a cup of tea during the conversation.
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IntoLight, glad you got the 500mg reduction and hope you do much better with it. I felt rushed when I had the last telemed appt with my MO, but it sure is convenient for all the reasons you say. Keep us posted.
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The end of my first week, madame x has treated me reasonably well. I have not had diarrhoea or nausea, but randomly once every other day I have had to make a mad dash to the bath room and vomited !?! I feel fine before and after. I have been zealously moisturising hands and feet as a preventative. I am lacking in energy, but I think that's largely due to restrictions covid 19 has put on my life. Fingers crossed, next week is ok.
Just- Sue, how are you getting on?
Have the best weekend you can.
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Denny10..are you eating before you take your pills?
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Hi Denny123 , yes, l had to take ibrance after 400 calories of food, so have established that habit. The sickness has been random: once before dinner , after dinner, just as l was going to bed and last time, the first thing l did after getting out of bed. I have spoken to my doctor, he said take the anti sickness tablets [l hate taking meds., ironic with long term mbc] and l don't feel nauseous, for 4 incidents over 8 days. l will take his advice if it gets worse. Thanks for asking.
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Denny10 - Thanks for checking in!
Week 1 went as good as it could have. Biggest side effect is fatigue. I have been resting every other day. I rest one day, then get a burst of energy and do a project with the kids or work a bit, then get tired our and rest the entire next day. I think I need to work on pacing myself. I am also more tired on days that are hot.
I ended up skipping the Compazine for the most part and seem to be doing fine. I took it twice before bed when I started feeling seasick while trying to go to sleep. I woke up well rested so that is good. I haven't taken it during the day yet and seem to be functioning pretty well without.
Because I started Xeloda while already having borderline Anemia, I will be getting a blood draw tomorrow to check my CBC and tumor marker. Crossing my fingers that things go well next week in general.
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Good morning all.
Just_Sue, glad to read your first week went well. Hopefully Madame X continues to treat you well. I'm on the 5th day of my 2nd cycle and so far so good.
My CBC was all good last week and CMP except my GFR dropped 7 pts below normal for the first time ever. Not even during infused TCHP did my GFR ever go below normal. I've been drinking water, but maybe not enough that morning. Concerns me, so will call MO today to find out her concern if any. Is this something any of you have experienced with Xeloda?
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Nicole_Rod, that sounds promising. Fingers crossed what was "seen" earlier is gone now or is actually just degenerative disease.
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Bliss,
I'm not on xeloda, but saw your comment about your eGFR on your lab report.
I'm on Ibrance/Faslodex and have been watching mine as well. I've dropped as low as 46 two months ago, and then on last month's blood pull, I drank a bottle of water before the pull. Popped back up to 51 or 52, which is my usual range (once in a while I go higher). My MO wasn't that concerned, but I did bring it up with her. Also mentioned it to my internist. Just had a blood pull today -- you can bet that I drank a bottle of water as I was driving there. Of course, then I had to pee immediately when I got to my center.
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BevJen, thanks for your reply. My eGFR number is usually between 68-75 with a previous low of 62. This last time, and for the first time was 53. MO wasn't concerned and, like you, said I was probably dehydrated. She advised drinking water before they recheck in two weeks. Good to know.
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Bliss, I'm looking at my estimated GFR and since 2017, it's gone in range up and down to a low of 43 and back to >60. Last year on the Ibrance and then the Verzenio it was in the 40s. Since stopping those meds in January and then going on Xeloda in March it's gone up in the 50s. Most recent July 31, it is 55. I am okay with that. How is all your other blood work? The rest of mine looks pretty good, with a few things high and a few low but only by very small numbers. The one that affected me was the low red blood count when on Verzenio and I ended up needing a blood transfusion.
I've been on the 7 days on Xeloda/7 days off since the middle of March. Towards the end of last week as I was taking the meds, my feet were burning and peeling the most they have and were tender to walk on. I think the Udderly Smooth with Urea was irritating my feet, so last night and this morning I rubbed them instead with Aquaphor and put on the gel footies. Today they are feeling better and I'm walking better. I find the feet tingling to increase during the end of the week I take the meds and then it eases up on my week off.
I don't find myself to be nauseated on Xeloda very often, but I have both Zofran and Compazine and will pop one if I need it. Zofran seems to be milder for me to take.
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I’m on the week off part of my 3rd cycle 2 weeks, 1 week off.
It’s been an interesting 3 weeks. My last week off I had some diarrhea which resolved itself mostly when I started back taking Xeloda. But then the belly cramps started. Think if heartburn and gas pains had a baby, fed it steroids and made it live in the middle, above the bellybutton but below the liver stomach etc. They eased off and then at the start of the second week hand and foot thing started..........my husband said he could use the bottom of my feet for taillights. Now on my week off, the big D. Food hardly has a chance to say hello, in one end and out the other.......I’m thinking I will be getting another dose reduction
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Divine....in the beginning I was using Udderly Smooth, Urea 40%, Amonium Lactate and Clobetasol....all suggested by my onc.
My feet were horrible, dry and cracked.
I then started to use only Aquaphor and the gel socks (on hands also with food service gloves). And I have continued with Aquaphor for over 2 years. I even use it during the day. Major difference and I should own stock in the company.
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