All about Xeloda

kt1966

Not sure- I think you will get used to it, but I've found that the fatigue seems to get worse the longer you're on it, but might just be me!

Hope you get a good run on it as most people think it's a relatively easy chemo. Hopefully doable for you.

ADJ

I, too, have sciatica, watery eyes and allergies, take 3 pills twice a day.

HopeFaithCourage

i am so freaking miserable! I called my oncologist office. Nurse talked to doc. Called in zofran. Zofran can't even touch this misery. I took the 5 this morning. I'm not taking anymore! I'm freaking out to what this means to my mets. Jaw throat neck and left arm deep exhausting pain. Stomach tore up.

kt1966

Did you tell them about the pain too? Hope it's not heart related- might pay to get it checked out.

Hope you feel better soon

mscal02

Hi All : I've been on Xeloda since November last year. My tumor markers are slowly going down. I want them to plummet ! I asked my Oncologist the other day if he could add something to hurry them along ! They've dropped from 400's to 200's.I have terrible pain in the joints of my fingers and moving pain in different parts of my body. It may be behind my knees for a couple of days, and then move to my upper arms or some place else. I've found that soaking in Epsom Salt baths in water as hot as I can stand is the only way I can make it. My Oncologist told me that he didn't think it was a side effect of Xeloda. He's afraid I want to stop taking it ! Other than the pain flaring up I feel great. I've been drinking a lot of green smoothies and eating lots of fruit and veggies. I skip meat at least twice a week. My hands and feet are darkening as we speak, but theyhaven't been sore.

SusaninSF

HopeFaithCourage,

The initial dosage is based on weight. Regardless, if you are suffering you should talk to your MO about adjusting the dosage. I think in general the side effects increase over time up to a certain point and then level out. Everyone is different and the initial dosage is just a best guess at what should work for you.

Hope you are able to feel better soon!

Hugs, Susan

ADJ

Hope,

Hang in there. Yes, dose is based on weight. Currently got down to 3 pills twice a day, 7 days on, then 7 days off. I always take 8 mg. Zofran along with 1/4 mg Ativan before breakfast and lunch, have my meal, then xeloda about dessert time. This routine changed me from dry heaving and hurting so bad to a gal who feels she can do this. Ativan for me is a must

HopeFaithCourage

Thank you ladies! I am so grateful to you! I'll csll my mo again tomorrow

goldie0827

HFC, I am so sorry you are going through this. 8 pills a day, wowsa! I started out on 7 and was going to quit due to the SE's. IL'm 5' 8" and 155 lbs. Onc dropped me down to 4 pills a day, did that for 2 cycles and now I'm trying 5 pills a day. And my TM's continued to go down with the lower doses. But he wants me to take as much as I can withstand.

Do you all try and  take your pills 12 hours apart? I am not a morning eater, so try to eat something around 6 am, I get up around 5. Then take my evening pills around 4-5. I don't like eating dinner that late either.

HopeFaithCourage

I'm embarrassed to say but I weigh twice what you do! I've never weighed this much. I worked until February but was in bed by 5. Pain and exhaustion. Pain and exhaustion has to stolen by ability to be active. Over the last couple years I've gained a ridiculous amount of weight. I'm so frustrated! !!

HopeFaithCourage

g oldie it's 9 pills a day I got it wrong earlier. 5 in am and 4 in pm. I knew my weight was bad but I pay for it 24-7. I am mindful of what I eat and my portions. I try to walk everyday.

stagefree

lexapro and canax are ok with Xeloda

stagefree

everyone beware of heart issues Se of xeloda. I had a heart attack on my 5th day of xeloda 1st cycle. Now on heart protective pills, I 'm on 39th cycle..

kt1966

Nice to see you again

Good point re being aware of other possible se's.

I'm only up to cycle 15- hoping I can stay on it as long as you, but I may be progressing. Hope not. TM's are rising & I have a few more symptoms. (Eg increased shortness of breath esp when lying down...)

Hoping for the best tho. Have a CT scan within the next month.

kt1966

Hopefaith, how did you go at the onc's? Did he have any insight as to why you have the pain? (Just thinking of stagefree's comments re affecting the heart. Hope all is well.

Actually, you probably haven't talked to him yet... I could be way off the mark, but would pay to mention it, just to rule it out

HopeFaithCourage

Thank you! I was having severe jaw pain and although my left arm aches and is hypersensitive to touch it's was significantly worse on the 5 and 6 day of X. I didn't take X last night or this morning. No unusual pain! I will talk to mo asap but I'm not sure he would do anything. I've never felt he believes the severity of my SE when I'm on chemotherapy. 2013 i did the and A C and the taxol. I was a good patient was in denial for self preservation of how bad I really felt. Always feel like I need to be a "good girl". I'm going to call my case manager and see how I can get a second opinion or possibly change mo.

HopeFaithCourage

Thank you for all the responses and the support!

ADJ

just a note...my MO says 28 days makes one cycl

gciriani

ADJ, I think the cycle length depends on what the oncologist decides. If one is 7 days on and 7 days off, the cycle is 14 days long. If one is 14 days on and 7 days off, then the cycle length is 21 days. So did your oncologist put you on a cycle 3 weeks on and one off, or on 2 weeks on and two off?

goldie0827

Oh, wouldn't 2 weeks on and 2 off be nice???

 

ADJ

well,

I go 7 days on, 7 days off, was told 28 days makes one cycle

kt1966

I have a strong suspicion that xeloda has failed me. I had been increasingly tired & finding harder to breathe. Got the point I couldn't lie on my back or left side to sleep. So anyway - had a pleural effusion drained on Tuesday, they removed 1.3 litres.

Problem is I'm still SOB & have pain. I have a CT on Sunday then onc appt on Monday. I have a feeling I'll be moving on to something new. I hope so, tho I'm sad to leave xeloda because it's doable & convenient.

Anyway - I hope you all last longer than me on it.

Onwards & upwards....

goldie0827

KT, I hope that is not the case, and you can stick with the "X". Please let us know what you found out. I was on Faslodex prior to "X" and was hoping it would last awhile, but it did not work for me, was only on it a couple of months. I have done 5 cycles of X, my cycle being 3 weeks, 2 wks on, 1 off.

Fingers crossed and prayers sent.

kt1966

Yep, time to move on from xeloda. It was good while it lasted

Onc agrees it is time to try something new.

Next for me is a port and taxol. I'm getting used to the idea now, at first not so much

Wishing you all the best for a long time with xeloda!

leftfootforward

Best wishs Kt1966.

blainejennifer

I've been on Xeloda for a year now, and thought I was getting ready to fail it because my TMs were elevating. However, they've held steady in the 50/60 range for a few cycles, and the CAT scan shows stability with some remission (depending on the bone lesion in question). So, staying the course for now.

MO was completely giddy about Ibrance, and said that two patients of his had been approved for it just that day, even though they weren't first line with it. He seemed to think that I could use it with Faslodex, even though I left Faslodex as my TMs were rising on it after a year. Hmmm? I imagine I'll question him harder when the time comes.

It feels odd posting good news when I know that somewhere, somehow, someone is not receiving good news. I must admit that when I'm progressing, I view the good news notices with a jealous eye, rather than celebrating the possibility of success. I have A Lot of personal growth to do, for sure.

Happy almost end of the school year everyone. DS is counting the moments. And, it means I'll get to sleep in!

apackoftwo

Blainejenni - would you tell me the dose of Xeloda you are taking? I was on 1000 mg. 2xay and it was easy but there was small progression in my liver met so the increased my dose to 1500 2xday and It is much harder. Thanks

blainejennifer

Twopack, I'm taking the same dose you are now. But, I am a big old fat lady, so I'm probably not feeling it as much as you are.

The side effects I get are the nausea, fatigue, and the hand/foot peeling. Oh, and some mild anemia. Ativan helps the nausea. I'm on Concerta for the fatigue (it's just extended release Ritalin). For the hand and foot peeling, I have to stay out of the water or it really ramps up. So short showers and a really good excuse not to mess with the dishes. The anemia has been the most bothersome, but I'm taking a very small iron supplement and trying to eat more meat.

Holler at your medical team for help with the side effects. There's lots of help in the big bag of medical tricks to help you endure.

mscal02

kt: I hope the next treatment works : I'm glad that we have a lot of drugs to try.

apackoftwo

thanks blainejenni - yes, I weigh 117# - I have had repeated sinus infections since starting Xeloda, of course the fatigue and hand foot some but not too bad - the fatigue is the worst - I have a scan in two days, Friday and it had been keeping my bone mets stable but liver met had grown - if not better they will be changing meds anyway - who knows what the next set of side effects will be! What a wild ride.