All about Xeloda
Comments
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Mike, what is her dosage? I am on 3000 mg per day divided over am and pm. 1 week on, 1 week off. I have my first scans in January. I had a significant progression in 3 months of Ibrance so praying Xeloda will knock it back.
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So... fatigue is clearly an issue with Madame X judging by recent posts. I am just about finished my third cycle, next week is the break, and I definitely feel like I’m swimming against the current every day. It hits me by mid afternoon - I feel completely done. It makes me realize that if I was living alone I would probably get home from work and crash. Dinner wouldn’t happen, except of course I need to take the second dose of X with food. At the moment I cannot wait for bedtime. I walk the dog and then up the stairs by 9:00 most days.
The issue of work is complicated for me. I’m still working full time but do have good benefits so STD/LTD is there for me. However, I feel having something to force me to get up and out the door is important. A colleague is dealing with lung cancer and has not worked since February. I see how easy it is for her to give in to the disease and psychologically, I don’t think she is doing well. Work is also a big part of who I am.
Decisions. Decisions.
Pat
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when I switched from 2 on 1 off to 7 and 7, my fatigue issues improved a lot. I also dropped from 3000 to 2500. Everything became a bit more doable. Maybe try that?
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Thx Stef. My priority at the moment is finding a treatment that works since the first two failed. I’m still not 100% sure that X is working so don’t want to consider a dose reduction at the moment. Will certainly keep it in mind for down the road if the situation improves.
Made it to the weekend so now I can take it slow for at least a couple of days.
Cheers
Pat
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Fatigue is a MAJOR issue for me too, at 2500 mg dose 2 weeks on 1 week off. Think I will ask about changing to the 7 on 7 off schedule. Goldie, I agree playing with our dose makes sense to me. We know our bodies best. On my last day I was not feeling well at all and just COULD NOT bring myself to swallow the night dose. Now I have a week off and hope to God I spring back a little.....
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HLB, thank you for asking. I do feel better since starting Xeloda. I haven't had any scans yet since starting it but cautiously optimistic that it is working. I am planing to go back to work mid January. Occupational Health advised to start with 4 hours a day and increase the hours slowly. I haven't been working since August. Huh..
Finished the third cycle of X. Appointment is on Tuesday. Hopefully blood is ok to start the next cycle and stay away from appointments during the holidays. My side effects are minimal, but fatigue is the main one. I have also noticed that after Xgeva shots, I do feel ill for a couple of days, mainly lack of energy and body ache. Anyone has the same symptoms with Xgeva?
I wish everyone peaceful and pain free/ SE free holidays filled with joy.
Love , Karina xx
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HLB, I've been on X for some time, and remember getting super tired in the beginning. Not so much now, but I can sleep at night, that's for sure! Usually a good 10 hours. Not sure there is anything that really helps. I think I was trying some sub lingual Vit. B12, hoping for some energy, but I don't think it worked. And like NO1 says, you can try a different dosage. The 7 on 7 off didn't work for me, but it does for others. I also did 1 pill a day, 3x's a day with no break, that worked for about 4 months, then I had an increase in markers, so I am back on 5 pills a day, 500 mg, 14/7. Good luck.
SadiesServant, I too feel it hit in the afternoon, which is why I take my lower dose in the morning, 2 pills and then my 3 in the evening. I'm in bed usually no later than 7, but I'm up early, 4-5 am. I have played with my dosage MANY times. My onc is ok with this.
Karina, I have no problems at all with Xgeva.
Another thing I do is labs every 6 weeks. Told onc that I was not going to live my life 3 weeks at a time, so I do them every 6. I don't see where that additional 3 weeks is going to change my lively hood or chances of surviving that much longer. And then I see him right after labs. I have to travel 4 hours, one way to him. So won't do that every 3 weeks either!
Wishing everyone a peaceful Christmas.
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Oops, forgot to post these. I took a couple pictures of my hands and nails. The nails start to life in the middle third of the nail, and then grow to the top. Fingers and toes, same on both, as it's not ALL of the nails. My skin is alligator tough where the ridges are, and hurt, but almost feel numb because they feel so thick. I use one of my used needles/syringes from my Xgeva and put some Oranic ACV with the Mother under the nail and also some Vicks. It has worked before, but now I'm gonna try some coconut oil instead of the Vicks and the ACV as well. My cuticles are dry and brittle. EVERY little crease has the dry splitting/peeling skin. I have an open split on my heel that just doesn't want to heal, so babying that one. It healed up once, to the point it didn't hurt, but split open again!
Cancer is truly the gift that keeps on giving....especially Stage IV!
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Goldie, I resemble those! I have one nail, a thumb nail, that just started doing the same. My skin however looks just like yours.
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Thanks everyone for the suggestions. I did ask the onc last time what his opinion was of 7/7 and 3/day with no break. He said he likes to go with what has proven to work in phase 3 trials, but that most people eventually need a dose reduction. I reduced from 3000 to 2000 on day 9 f the first cycle. It's a lot better and my hands and feet have almost no issues. 7/7 would be great because it's usually Day 13 and then into the week off that I get so tired. I usually have no problem sleeping, I can nod off anywhere, but lately I have Ben getting up 3 times to pee and have very strange vivid dreams, usually about my cats getting hurt or kidnapped.
Karina when I first started xgeva I would get tired that day and the day after, like I could not even go for a walk, I was dragging my feet. It went away after about 3 shots and I've had no side effects at all from it. There are certain tricks people use and I can't remember them, but I think lots of water before the shot and maybe a claritin? I do remember getting the flu feeling from neulasta years ago.
I've been pretty lucky as far as side effects from anything so far, except being tired all the time. But with X it's such a profound tiredness. I will bring up the 7/7 again with the onc. I'm concerned it might not work but I won't know unless I try.
Goldie, I would definitely try the coconut oil. I'm starting to think it's a cure all for many things. I have very hard big toenails that one of them wants to grow curved and get painful. I always make sure to put some on and under at least that nail and it softens it so it grows more flat. I also think I stopped a cold sore with it. I had a lump like I got punched in the mouth, which is usually how they start. I can't be sure about that though but the coconut oil is anti microbial and all that good stuff. And as I mentioned before my dry eyes really love it! No drops at all! Oh, and my eyelashes are growing! I didn't notice because I haven't been wearin eye makeup, but one day last week I decided to wear mascara because my eyes were feeling good. I couldn't believe how much longer they had gotten! I put it all over my face but my wrinkles are not going away.
I hope you are all having a wonderful holday season with easy side effects and lots of loved ones around!
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HLB, I buy a huge thing of coconut oil, organic, cold pressed. Use it for a ton of things. I used some yesterday on a wooden antique ironing board I have, what a difference! I had to laugh that it's not getting rid of your wrinkles! Not to go against your onc, but like you said, you won't know unless you try. It's YOUR body, not his. But you have to do what you feel is right. Now that I think of it, I use the oil to take my make up off, and my lashes too have grown.
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Thanks Goldie, I don't like to go against my onc and in some ways he very good. But it's pretty much his way and that's it! Sometimes there's a resident in the room and I he said to the resident "you have to remember it's our job to say what we think is best, but ultimately it's the patient's decision". He was referring to something I was being non compliant about but I don't remember what it was. So he does know but he will push for his way and make you afraid and second guess yourself!
Are those nails lifting away from the nail bed? I wonder why they get the yellow coloring. Wish I knew of something that would help.
Yes the wrinkles are a constant battle that I'm afraid have no solution other than a facelift or some kind of injection. It seems like these treatments made me old very quickly. I always looked younger than my age, now I look about 10 yrs older what with the wrinkles, no eye makeup, cotton candy hair and brown spots all over my hands and forearms that seemed to show up overnight. I tried porcelana but it's just one more chore and it smells like elmers glue to me.
The eyelash thing is pretty awesome because products to make them grow are pretty expensive.
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HLB, the new protocols for X does indeed include the 7/7. Also 7/7 does work. I had a CT just after starting X. There was a small amount of evidence of shrinkage to liver Mets. I just finished the 2nd round on 7/7. Was scheduled for a liver bx last week. Got prepped, onto the table and they cancelled the bx because the liver Mets were no longer visible.
So 7/7 does work.
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My wife is on 7/7 schedule. 3 pills @ 500 mgs each in the morning and 12 hrs later 2 @ 500 mgs each. Last spring her ER+ turned triple negative with multiple mets to her spine and one to a hip bone. Last PET/CT scan showed most of the spinal mets either gone completely and the ones left greatly reduced. The largest met, to her hip bone had no change. Dr. Is watching that one closely.
MikeW.
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No1 and Mike, thanks that is very encouraging! I went from 3000 to 2000 and feel a little bit guilty that maybe I should have gone to 2500. But I'm feeling good on this dose except for the tiredness. Also, my marker went way down after the first cycle, and the 2nd one was at 2000 and it went way down again, so I'm encouraged by that. My next one will be in Jan. I will feel really good about it if it's still going way down. I would like to be able to hold off on changing until I see that one and get a better idea but I am very tempted to just go for the 7/7. I wanted to shop this weekend but I slept off and on all weekend.
I think I will go ahead and try this for my next cycle, which starts wed. Thanks to everyone for the all of the helpful info and Merry Christmas!!
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Good to hear the 7/7 schedule is working. I see MO onTuesday and will ask about it. My hand foot is getting nasty and I'm only on cycle 3. I also have a pounding heart most of the time and small red scaly patches on my arms and legs a few on my face. Anyone else get that?
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Scwilly, thank you for your advice. I am onmy first cycle of xeloda, I keep moisturizing, did not notice any SE yet but I am worried. Did you notice anything with the first cycle or only later?
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HLB, my onc says that it's my job to manage the meds to the side-effects I'm willing to put up with. This after I told him I needed to take an extra week off to avoid being on airplanes on Day 14. I got the "you do what you think best" story.
That's what you're doing. Don't feel bad about it. It IS your decision.
Mike, that's great news! So glad the mets are disappearing.
My hands don't look as bad as Goldie (guessing that at 49 I'm younger than you) but they do look like they've spent time in water.
Hope everyone is having a great holiday period! (whichever holidays you celebrate)
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ihavebreastcancer: My first round was a nightmare - I had v sore feet and the sickness and stomach trouble started about 1 week in and seemed to continue into my week off. I had both sickness and stomach cramps and diarrhea - once all together (sorry for the tmi lol) So I am glad to have sorted that or perhaps it went away on its own as my stomach got used to the drug. I find Zofran great but does cause constipation which I counteract with a lazitive at night, and I seem to clear the next day. I would advise - just don't let it get out of control! However, I was on a high dose and reduced for subsequent rounds.
However this round my feet and hands have been v sore. I am wondering if it because we have just got a lovely heated mattress cover, which stops the bed being chilly to get in. Though I live in California our heating systems are not great - and the nights get cold - so in the winters it can get a bit chilly indoors. So I am now only going to use a heated throw and not put on the mattress on my side. If this works - then I will see if I can get something to stop my feet overheating.
Also - I really think I should drink more! I've never been very good at drinking - but I have just made some lovely Ginger and Lemonade (see recipe) with some Meyer lemons for my tree. I have a bunch left so will make that again. Also - I really really lather my feet to stop the peeling - my hands get definitely like Goldies pictures if I don't and sometimes the next day if I do at night. I have cut my fingernails v short as I keep catching them and thats very sore. I feel the nails are getting tight andvery tender and I have to avoid using them. I did take time to soak my feet and hands and try to do some maintenance not hem to remove all the extra stuff that seems to grow under my nails. I am hoping next round I might get a grip of my hands a feet a bit more.
Goodness, the cure is very much worse them my symptoms but I suppose not the alternative that would happen if I didn't do anything! What a crazy disease we have - I don't know any other that the treatment gives such nasty side effects - I suppose there are some. I hope you, and everyone, have a smooth time with Xeloda - its doing me such good that I am determined to stay on it.
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HLB, my nails are most likely yellow from polish and yes they are lifting. But it starts in the middle of my nail and then grows up. So strange the TM numbers. Mine are floating in the 120's right now and have been as high as the 150's and here yours are 2000!
NO1, that is amazing news and you were ON THE TABLE?
Mike, good news for your wife. X is a good drug and we do see lots of good results.
Pajim, I'm with you and managing my own meds and so is my onc. I am 59, so yes you are younger.
Linda, I got a rash when I first started. Was on 3500 mg a day (7 pills), and it itched, on my arms, legs, chest and back. I am a freckled person, so a bit hard to see. Some of the sores are open. At that point, I was NOT going to do this drug. I had double over cramping along with explosive D.
My right heel and where it split. It feels a whole lot worse than it looks, especially if I bump it. But it is starting to close for the 2nd time. Again, skin is very thick and rough, no....rough is not the right word, altho they are rough......hard?
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Goldie, yep, I was on the table. First ultra sound, no visualize. Than a CT, still no visualization. Followed by a CT with contrast, still no visualization.
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NO1 what wonderful news! What a great Christmas gift.
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Goldie, Yes! Thats what mine look like, but are not nearly as severe as yours are. but a few bled easily. Did you dose reduce? Hope that has resolved itself and you are doing better.
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Linda, the rash is from when I first started X, about 3 years ago. I no longer have that and yes I have had many dose changes. I am currently on 2500 mg 14/7. I was on 1 pill, 3 x's a time with no break. Did that for about 4 months, then my markers crept up a bit, so I changed to the 2500 mg. The foot and hand pics are current. The H/F syndrome does not go away.
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1 month down and no energy. Please tell me when it will return or what I need to to get back ? Merry Christmas and good news for all
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The exhaustion is the worst. I too can fall asleep the drop of a hat. Also have a constant nauseous stomach, or more like super empty feeling. Like hunger burn. Which is probably is partially that. I've tried Zoran and some CBD products. But so far nothing has helped much. I'm sure it partly because of the ascites. I am going to switch to 2 pills in the day and 3 at night too so hopefully sleep though some of the tiredness. Goldie my nails looked liked that with the Abraxane and are just now growing out nice, almost normal to the ends. I hope it doesn't start over!! I'm on my 5th day of a week break and feel no better at all which is so disappointing. The Christmas season is flying by with me on the couch. I hate it.
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Pajim, thanks for the encouragement, and I think you are right.
Artist, I know what you mean. I am on my week off and I start the next cycle wed. Thursday I was sent home for sleeping, then I slept sat and sun off an on all weekend. I had plans for Christmas shopping but all I did was sleep, so disgusted.
Goldie, my feet on the bottom look like your hands. It's not really dry, but like a think layer of shiny wrinkly plastic. My hands are not bad but just very dry. On the first cycle the tips of the fingers got dry and then they got sore. They have not gotten sore since I reduced the dose. I felt a twinge of the sore spot on my feet today, which happened the last time I had a wek off also. Things seem to go downhill on the last two days then goes into the week off which is very disappointing. So my best time so far is the first week on.
I read a post from years ago that a member took olive leaf extract and it really helped with her energy, and also brings down high blood pressure. Might be worth a try. I am sick of pills! I am sick of drinks too. Smoothie in the morning that my dad makes me, which I do like, and he also makes carrot juice. Mom makes essiac tea. Now dad is talking about super beets. I said I can't drink anything else! Lol!
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Kimchee, when I first started X I had bad fatigue. I don't get it much now or it's mild. However, I don't remember when I started to feel better.
Artist, the thing with my nails started this like in the last 6 months, maybe more, I don't remember (imagine that). Ya, week off is not the best. My best days are the end of week off and beginning of week on, just like someone else mentioned.
One time, when I first started using MMJ, my TM's went way down and I took a couple months off of X and was doing nothing other than the MMJ. Then the markers started to rise so I went back on X. I might even ask to try Faslodex again when X quits working. I found that the easiest of treatments, other than the drive to doctors, 2 and a half hours round trip. I only got about 4 months on Faslodex. Fatigue now a days is not too bad, but I do need my sleep at night. Sometimes catching 10 hours!
HLB, thanks for the chuckle. "I can't drink anything else." I went through a bout here recently where I started to lose a lot of weight. Not sure why, it just started, no change in diet. I lost close to 30 lbs. And another time I couldn't eat. Couldn't stand even the thought of food in my mouth. That is when liquids were my friend. Oh, most of the weight I lost found its way back!
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Look who I got to meet on our cruise. 0 -
What fun Dianarose! I hope you had a wonderful time! (You have the sweetest face).
Mary
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