All about Xeloda
Comments
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I seem to have different side effects on every round that I go on. The first time it was mouth sores and diarrhea. This time it was swollen legs and feet, leg cramps, leg rash, and a broken blood vessel in my eye. (At least I think that that was a side effect. On the whole, though it hasn't been as bad as I was expecting. I haven't had the H and F syndrome that so many of you ladies have suffered through. Hope you are all feeling better soon.
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I'm up to round 7 on X & have very little side effects!!
I feel like I want all these awful side effects to be sure it's doing the job......lol
I do get the fatigue, very little D, no H & F but I do get very itchy on my hands & around my neck as well as VERY thirsty.....some nights I wake & drink a litre or 2 of water, which of course then leads to trips to the loo!!
And my hair is growing but it's so different to last time i lost it....it is a mass of curls!! I hate it & have no clue what to do with it, i'm still wearing wigs & scarves.......last time it grew back straight, much easier to deal with!!
Amazing how everyone has different side effects....
Take care girls.
Karen x0 -
Kazzie61- when my hair grew back after tc chemo - it was curly like a bad perm. I got the hairdresser to cut my hair very short (clippers) and it kept the curls in check. It eventually came back to my original hair.
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I have a question about how people manage the cost of Xeloda. I realize everyone's health/prescription coverage is different, but my 20 percent copay for two cycles (7/7) is almost $500. If it works for me, my MO wants to keep me on it for 6 months. That really adds up. I don't get it- if I go in for an infusion I pay zero out of pocket. Has my $$ luck run out?
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I will send you a private messsage regarding this.
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Check out the Xeloda website, there's financial assistance based on income.
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I have also been having a lot of leg cramps, especially at night, and have found something that really helps. Right when it starts, lie down on your back (if you're not already) and pull/flex your toes, actually your whole foot, towards your knee. This stretches the calf muscle and seems to avert a full-blown cramp. Don't know if it works in the middle of one, and it doesn't seem to work if you're sitting up (for me anyway). Have been having a lot of trouble with dry eyes, gone through so many different types of drops and nothing seems to really help. Any suggestions?
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I was awaken yesterday morning with a horrible cramp in my calf. At night watching TV my left foot cramps. I take a slug of pedialite and within 10 minutes the cramp is gone. I just never thought of it being a SE of Xeloda. The worst is getting the cramp while driving.
Gigi
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Tadpole, At the worst of my cramping problem when I pulled up my toe for a calf spasm it started a spasm up the front of my leg - lol I didn't even know I had muscle there. I can also recommend walking if the cramp is moving around various leg muscles. Yoga is a bit bizarre - had to drop my class - I kept falling out of poses because of spasms triggered by the stretching. I'm on cycle 4 now - problem seems to have resolved some - not waking up at night anyway and slow stretches not triggering any spasms but taking calcium supp's now.
Re eyes: I've had great success with Systane Balance - I spend long hours at the computer so that increases dryness also. Its an opaque white liquid - seems to work between a gel (leaves my vision blurry) and a simple tears formula. I always have eye drops right beside my Hand/Foot creams on my computer desk. Life saver - I had vessels pop twice (blood red eyes are interesting and fun to coordinate clothing with) and lots of inflammation in cycles 2&3. Not so much this round so far.
http://www.systane.com/Systane-Balance-Lubricant-Eye-Drops.aspx
TXGigi - Like the pedialite suggestion - Thanks
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SophieJean, thanks for the info. I've tried other Systane drops, but not the Balance, so will give it a go.
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I too get these darn cramps in my leg......but only in the middle of the night.
Was too scared to mention it to the onc coz if its more mets I'm not sure I want to know!
Sounds like it could just be a side effect of Xeloda though...
I do wake in the night with the most awful pins & needles & numbness in my hands/finger...anyone else have this?
Started round 7 today!!
Karen x0 -
Karen, I also get pins and needles if I sleep on my arm that has mets. My onc told me it is because the mets already compromise the blood glow in that arm, so certain positions restrict the blood flow even more. She said it's not a problem, it's just annoying for me.
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Karen, I believe that camps is a side effect from the Xgeva mainly as well as Xeloda to a lesser extent. I think that it has something to do with calcium levels. I get my cramps at night immediately after the Xgeva injection. As for pins and needles, I get them in both hands and also the feet sometimes. I get up and move around and wave my arms around and open and close my hands to get the circulation going.
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Latte & Mandy.....thanks for the info. Interestingly, the cramps in the legs do seem to be more pronounced around the time of the Xgeva injection!
I too lie in bed with the pins & needles, waving my arms around & wiggling my fingers.....it's frustrating more than anything. Then once awake, a trip to the loo calls & as I seem to get extremely thirsty on X, I then need a drink which of course sends me back to the loo a couple of hours later....no wonder I'm always tired....lol
Take care.
Karen x0 -
Dropping the X from my regimen. It will be Ixempra only on a reduced dose. Just got a brand new bottle of X.
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Xeloda continues to treat me well and treats the cancer badly. My TM is now down to 96. My CMP is all normal. And some of my CBCs are actually doing better. My platelets are back to normal and my whites are getting stronger. The CT I had last week showed everything stable.
The only consistent SE is the fatigue that hits every couple of weeks. I've had it for the last 3 days and I don't know how long it will last. But of all the SEs that is the one I find the easiest to handle since I'm on disability and don't have any commitments that I can't adjust.
Right now I feel very, very fortunate. I know this can turn in a heartbeat.0 -
Anacortes, wahoo! that is wonderful news. Here's hoping that X keeps on working for many years to come. Congratulations!!!
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Anacortes....that is fabulous news & long may it last....:)
Very happy for you.
Karen x0 -
Chickadee ... why are you off x? Best of luck to you.
AnacortesGi ... fabulous, always helps to give me hope. Enjoy!
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Hello everyone, I come on to read often and you all inspire me so much. I unfortunately can't stay on long because I just get too weepy thinking of all of you out there and how brave you are. .and how UNbrave I am. I am just hard wired for sobbing. . . I am so ashamed of myself. . .but I was a weeper long before I ever had to deal with breast cancer. . . have always cried at the drop of a hat at sad movies, beautiful sunsets, anything that brings out emotions. . .
I have been on Xeloda for almost a year, 2 weeks on, one week off. H-F side effects are there but manageable. What I would love to know from all of you is how you are dealing with the indigestion, stomachache SEs. For me it is so difficult because that is where my mets are-- in my stomach. So I don't know whether it is the c cells or the Xeloda SEs that are causing the distress. Doc doesn't seem to know either. Pets just show I have an distressed stomach. But they know some cancer is there because my stomach was biopsed a year and a half ago. All the joy out of eating, needless to say, is gone. But eat we must. . .no matter how crappy it feels!
So I worry. . .and very unfortunately weep way more than I should. I've tried drugs to help stem the worry but so far nothing seems to work. I hate that I can't pull myself together more often. What are your stategies when you are down and feeling poorly?
Any of you have mets in the stomach? What do you do on a beautiful day like today when you have chronic indigestion pain? Hard to be "up" when you feel like you have the flu. Do you ever have days when you just lose it? I'm rambling on my lunch hour at work. . .
Thanks so much for your thoughts and advise. Your chats back and forth mean more than you could possibly know. . .even though I don't particpate.
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I just started Xeloda and I have been sleeping nonstop and sweating like crazy. I can't stand the seating smell of my sheets. Luckily, I have a fantastic husband who changes the sheets for me. Have others had these side effects?
I started reading this thread from the beginning, but so many of them have passed away I couldn't handle it.0 -
Welcome SPAMgirl.
I posted this on the Afinitor thread last week but I am on a combo of Xeloda, Afinitor, tykerb and Herceptin and I just had scans last week that showed regression. No idea which drug to give credit to. I have been on three cycles of X. Very low dose. Only 2000 mg a day. But no SE other than nausea, vomiting, mouth sores and diarhea. All SE have improved. Again do not know which drug causes what problems. Right now feel good and am waiting for the other shoe to drop and for this combo also to desert me. Generally, I fail all chemos around the 4th or 5th cycle.
Donagee,
Sorry you feel so bad. I am a weepy person myself. I just cry and watch mindless TV to take my mind off.0 -
Tomorrow is scan day. First since starting Xeloda. I hope it is working! The wait will be hard.
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how do I get rid of the blisters on my lips?
1st week on Xeloda was great. Day 9 everything started. HFS, swollen tongue, rash, diareha, bad stomach aches. Afraid to eat. I did get me dosage reduced. I just want to get rid of the blisters.
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Karen......good luck with your 'first' scans
Thinking of you & wishing for good news.....
Karen xxx0 -
MamaPeg -
This my go to night cream - Neosporin lip health overnight . Its a fairly new product. It healed the ugly corner of the mouth blistering very quickly. Make sure that these are not cold sores from reduced neut counts. They heal best with an antiviral.
Spamgirl. - Fatigue for me was helped initially by taking meds later in the day ( around 11 am and then just before bed) and with dose reductions it disappeared.
Donagee - Smaller meals more often helped with my stomach pain but I have no mets there. Also an antiacids like they give before chemo (ratinidine?) was helpful. Also watch for new food intolerances. Dairy and gluten allergies/ intolerances are easily triggered by chemo. Might help. It's so hard when pain is making things miserable.0 -
Mamapeg - I am so sorry you are having every symptom in the book.
If you sign up at the Xeloda website, you will have someone to call 24/7. Is your MO aware of all your side effects? Sounds like you need a reduction. I hope Sophie's lip treatment does the trick.0 -
Scan showed progression. Makes me sad, because this was a really easy drug for me. I think that's the end of trying to buy time with chemo for me. I'm not willing to do another harsh one.
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* I had lip blisters on my 2-3rd cycles, but not any more (do have them still but no major problem there. Heals mostly on the off week (14/7)
*Fatigue & sleep.. not yet asked for a lower dosage as has already reduced TM's 1/10th in 5 cycles. Started with 2000+, so prefer being sleeping beauty to lower dosage still.. MO actually suggested even if on lower dosage, the body needs as much rest as we possibly can while on chemo.
*Stomach issues..I am on 3 different stomach ulcer meds (not antacid ones) twice daily. Works wonders. No stomach pain, no serious nausia, no need for Zofran any more.. and eat 6-8 small meals, even if not feeling like it. Helps the digestive system keep working..
*HFS..have feet pain when up & going too much a day, so try to relax on my couch with feet up when I am sitting down, which I do most of the day. Feet have already grown a full size, but who cares..though I wonder if they will ever shrink down 'cos I have some really cute new shoes
*Happy for the ones with NED & Reggie, sorry for the ones with progression..
hugs all,
Ebru
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Karen (obxk) - so sorry to hear about your progression.
I hope you and your mo come up with a plan that you are comfortable with.
Thinking of you
Gab0
