All about Xeloda

Frapp

Does anyone else seem to retain water? My legs swell so much I dont have ankles.

Chickadee

Yes, especially my left. My pretty sandals are staying in the closet.

Frapp

The cankles are new. Maybe it's from being In the heat during vacation. I hope it goes down. My entire body feels puffy to the point of aching.



Chickadee,

You'll want some comfy shoes for that cruise.

Chickadee

I've been looking. So far my sneakers are it. At least they provide a little compression. This ankle has always swelled during the summer heat but within the first cycle of X it swelled much more. It's moderating now after many cycles but still gets tight some days.



When the heat eases and I can go back to long pants I'll put those Miracle Socks on again. They did help somewhat, not completely.

Cynthia1962

I'm retaining water in my upper body.  My fingers, tummy, and breasts.  So far, my ankles have been spared. 

Anonymous

I might have already asked you this but I can't remember if I did.  

Has anyone else had spotty arms, legs & chest from Xeloda?  I look like I've got chicken pox & it's getting worse.

Frapp

Do they itch? I got somryhing like that on another med and I was mad with itching. Doc put me on an allergy med that helped but not enough. I had to come off. Try some benedryl and see if that helps. I don't have any spots with the xeloda.

Anonymous

Frapp:  They do itch.  Every few days they double in number.  I hadn't heard of this as a SE of Xeloda & it could be that I'm receiving the medication in the double-blind study I'm doing along with the X.  I take a different, day-long, non-drowsy anti-histamine every day (can't remember the name) at the moment but will try Benedryl. I've tried Aloe Vera gel that calms the itching but wake up scratching during the night so I'm trying Camomile on the spots after my shower tonight.  If that doesn't work I'll move onto a medicated skin treatment.

I think the X is working as my back & leg pain has disappeared.  Hope I don't have to come off it.

MBCWarrior

Hi all new to the community! I have been on 4 cycles of Xeloda at a dose of 3,000 (6 500 pills a day) on the 2 weeks on 1 week off cycle. During this I got a DVT (deep vein thrombosis) since found that I have genetic mutation Factor V Leiden that adds to the risk of clots so don't think it was the Xeloda just the C monster and the mutation. Anyhow the only SE I had was mild nausea, some contstipation and a huge bladder empty about an hour after taking a dose.

Now because my CA 153 is up to 90 they upped me to 4,000. Now I am having more nausea but no other symptoms except fatigue. (I take Cancerta to help with the fatigue).

I have neuropathy in my feet from Abraxane (which did help lower my many mets to about half), so far I don't have much in my feet added by the Xeloda but I have found that soaking my feet in vinegar and water each night helps them feel better (1 part vinegar to 2 parts water), and then I lotion them up before bed.

I have 2 small 10mm liver mets in addition to the bone ones (new since May) the oncologist is talking about trying something different after the next cycle and PET. My son wants me to go to Mayo to get another opinion on what to do next.
Though I am ER and PR positive the hormonals have not seemed to keep me stable even for 6 months.  I am currently on Falsodex, Xegeva, Xeloda and low dose heparin to get over the DVT (2 shots a day ugh but Coumdin and Xeloda don't play well together).

I guess I am just looking for some thoughts on what to do next and some support.

I hate the term survivor - I am a warrior fighting the big C!

Frapp

Hi warrior and welcome.  I hate the term survivor also, with a passion.  I was also just diagnosed this past May with small mets to liver.  Up until then it was just bone.  I'm 1 cycle ahead of you with X.  I take vitamin 12 everynight and that seems to have helped with the fatigure.  I am on 4,000 2 x's a day, 14/7 schedule.  I had more foot problems and nausea the last week of this past cycle but I was also on vacation and on my feel a lot more than normal.  I was at the beach almost everyday and I think the heat plays a big part on the side effects, so even though I stayed under an umbrella, I just didn't feel the best.  I find that if I eat something when I feel nausous it helps, but it's really hard to eat when you feel that way.  I just eat a piece of toast and that really helps.

 A second opinion never hurts.  It also helps you to feel a bit more confident in what's going on. 

Pat

MBCWarrior

Pat,

Thanks for the response, yeah it is hard when nausous to eat something, maybe I am waiting too long between meals, I willl try adding more small snacks and see if that helps.

What is frustrating on the meds is that I am not getting much benefit from them. I wish I new of a better way to figure out what is gonna work and what is not. Maybe Mayo can give me more insight. The liver mets scare me. Wondering if I should be more agressive - maybe surgery, just don't know.

I hope the Xeloda is working for you!  Keep me updated and I will do same.

Sher 

KarmaKittie

Sher -- My mom has described the nausea as similar to pregnancy nausea. She says saltines help when her tummy is empty. Hope that might help. 

Swannay

Hi xeloda gals, I just got the results of my pet scan. After 4 cycles of xeloda, my onc. says I am NED. The met on my liver is gone and so is one under arm. I was diagnosed stage 4 from the beginning. That was 4 years ago and I have never been NED. I'm thrilled, I know it will come back and my fear is still there but today feels so good.



I wish you all the same.



Renee

Frapp

WoooooooHooooooo!  Can you hear the foot stomping?  CONGRATULATIONS!!!!!

Chickadee

Green eyed envy here.......and very happy for you!!!

braids3

yeah! fantastic!!

singletona80

Swannay.. That's great !! CONGRATS!!!

gail5

Swannay - that's great news. My onc says it's a slow acting chemo, so to be NED after only 4 cycles is fantastic.

Swannay

Thanks everyone for your good wishes. My hope is all of us get to dance with NED. Just wish I didn't have to put up with so many side effects.

Renee

Frapp

I'm having scans on Monday with results on Wed.  Very very nervous.  I'm not feeling like it's working all around.  Some areas yes, but others no.  I'm hoping my liver is on the yes side.  And I just saw my records of last scans yesterday and noticed a remark about possible lung mets.  That has scared the dickens out of me too.  I don't know how I missed that the first time around.  I feel the anxiety game ramping up.  I think I have enough ativan left.  :-)

Lynn1

Swannay:  That is such great news!  Hope you're planning a big celebration!! 

Frapp:  Wishing you good news from your scans next week!  I think scan time makes everyone anxious.  Hope you found that Ativan!

Swannay

Frapp, I just went through the anxiety of waiting. Ativan does help me but I know how hard it is. I did not expect such good news on mine since this chemo has made me feel so crappy. I'm hoping your news is good. Saying a prayer for you.

Frapp

Thanks swannay. I've really felt pretty good on this. I hope it is working cause this has been one of the easiest meds for me so far.

Chickadee

I feel the same way. I've been so normal lately, I'm scared it ain't working. But I feel just fine. Today's last off day this week, tomorrow back on.

banjobanjo

Congratulations, Renee; that's really good news.  

I've been on eight cycles of Xeloda with no problems (1000mg twice a day)  and had an MRI on my spine and neck yesterday.  All seems well, one little spot that might shrink more, might disappear, might get bigger - we will see in November.  Now for the brain scan on 3 Sept, which obviously worries me more.  Hoping I can keep going on Xeloda and that it continues to do such a good job for you!

susan3

just got off of xeloda. my feet were pretty bad. i found that during the day no crack was the best applied with aquaphore and nice running socks. when the lotion was absorbed i swithed to any kind of ugg shoes you like. the best thing is  to keep feet cool. uggs were made for surfers actually so their feet would stay cool in the summer. and for night time, the best i found was mary kay emolient night cream for your face. yes i said for your face. rub it on your feet and put loose comfy socks on. they feel amazing in the morning. unfortunately doesnt last all day, but that helped me the best. was even able to run occasionaly. also gabapentin and tramadol work well together to help with pain. i am a hairdresser so that was really important. also if i was on them to long i would give them an ice bath. kept them out of warm water to and only had my hands in cold water. i know thats a lot to do, but it really worked. felt like i was walking on schards of glass if i didnt follow that routine, even then, sometimes i spent th day in bed with my feet up. good luck everyone!!!!! i am on 11 yrs, reoccurd a year ago as stage four. lots of nodes involved, on my 4th treatment in a year..keep going to you cant girls, hang in there

susan3

i was told to stay out of sun and spray an anti itch spray on them

braids3

Frapp: Wishing you good news from your scans next week  just got put on tykerb any advice ?love and blessings

Frapp

Thanks braids, I wish I had something for you but I've never been on tykerb and unfortunately don't know anything about it. Sorry to hear that X quit working for you. Start a tykerb thread and keep us informed on how it goes. Wishing tykerb gives you a looooong gentile run.

MBCWarrior

I just saw my oncologist on Thursday after having one of the best off weeks I have had in 6 months. Thinks the higher dose may be working better. Did another CA 153 and agreed that after this cycle if it is the same or lower I will continue another cycle and then PET/CT, if it is up we will do the PET/CT right away and then off to Mayo for some new thinking. Also put me on Priolsec cause the nause seems intermittent and might be made worse by acid reflux. Willing to try that and see if it makes a difference, who knows?

Frapp I hope your scans go well