XELODA

[BangorBelle56]

Anyone have problems on Xeloda? I feel I have lost my life . I sleep a lot during the day, fall over a lot. Have terrible tummy troubles. Can’t get out for much of a walk as all toilets are closed. Hands and feet better since one week off one week off. Wish I was back on taxol but not allowed until November to give bone marrow a chanc to recover from taxol.

[MacroMom]

So sorry to read this Ruth, especially after hearing about your last improved scans. It's such a balancing act.... kicking back the cancer without falling on our butts from side effects! I wonder if you are still on Avastin too, because that can cause stomach pains and overall weakness. As you probably know from my posts I had a pretty easy time on Xeloda, but that's the only med I took and my dosage was 2600mg/day, week on, week off. Wondering if dosing could be adjusted on either of these drugs? I'm glad the week on/week off is helping with the hand/foot syndrome at least. I'll be thinking of you and sending hopes for continued healing and renewed energy!

[BangorBelle56 in reply to MacroMom]

Thanks for the lovely reply

[barbarac76]

Hi.

I'm really sorry to hear you're having a rough time with Xeloda.

About the fatigue - my experience says that it will get better. My memory is cloudy and I gave up on tracking my side effects, but my friend, who was also on Xeloda, reminded me how we were both extremely fatigued in the first few months. Now, I still get tired, but not in that debilitating sort of way. How long have you been on Xeloda?

About the stomach issues - when I started Xeloda, my oncologist prepared me for the worst regarding GI issues - she said it was a very common side effect. I haven't experienced anything like you describe. I'm sorry to ask the obvious, but do you take your Xeloda on a full stomach? Both my oncologist and specialty pharmacist really emphasized that when I started.

I agree with MacroMom - maybe you should talk to your oncologist about adjusting the dose. My oncologist dropped my dose from 1500mg/1500mg daily to 1500/1000. She wanted to go further to 1000/1000.

I hope you can get some answers soon.

Barbara

[BangorBelle56 in reply to barbarac76]

Thanks so much Barbara. Yes I take it within 20mins of my food. I take one week on one week off with 4300 per day. My oncologist is giving me a break for a couple of weeks. I also take Denosumab and Avastin. Have taken Denosumab for ages so think it is either Avastin or Xeloda causing me problems. I am quite used to various chemos. Have been on Xeloda 14 weeks. How long have you been on it and what are your mets? Mine are liver, spine and lungs. x

[barbarac76 in reply to BangorBelle56]

I know nothing about the dosing of Xeloda, but 4300mg daily seems high based on what I've read from other women on this site. I realize that everyone is different with the side effects of different treatments. I had no trouble with the highest dose of Ibrance, but never even tried the highest dose of Afinitor because I had such trouble with the lower dose.

I remember my oncologist warning me that side effects of Xeloda could get worse around the 4-6-month mark. Have you had the stomach issues from the start?

I've been on Xeloda since February 2019 when my MBC progressed to my liver while I was on Ibrance. Since Xeloda, the liver has cleared up, but cancer is still in my lungs, T9 vertebrae, and lymph nodes, but stable. Have you had a scan since starting Xeloda? I'm due for one at the end of June.

[BangorBelle56 in reply to barbarac76]

Yes had a scan a couple of weeks ago and everything was good particularly the liver Which

has always been my worst growing met. I am very lucky to get a total body MRI and CT scan every 9 weeks. Xx

[Marieleb]

So sorry to hear that. I had not side effect on Xeloda but then again after 3 cycles I had significant nodal, bone and liver mets progression so the fact it is working for you at least can give you a bit of comfort as well as the fact that it is temporary (as they are only considering it for 6 months before putting you back on taxol). Having said that if you feel so rotten on it it will affect your well-being just as much... As others have said may be they would consider a lesser dose and an early return to Taxol .... It is easier to deal with horrific side effect once you can visualize it ending in a couple of months...

I hope things ease up for you... Thinking of you.

[Julie2233]

Hi 🙂 I’ve just started my 3rd cycle of xeloda and I’m on a dose of 2,100. Half way through the last cycle I developed quite a bad migraine without the headache and felt at sea for 4 days but then I realised that I hadn’t been drinking enough. I haven’t had the gi issues I was told to expect, in fact my tummy is better than it’s been in years, but I’m sure there is time for that to change.

The biggest issue I’m having is very dry skin particularly on my hands and feet, a lovely nurse at the hospital gave me a tube of pliazon which does seem to have helped.

I am sleeping more and I’m very pleased that I can work from home so I can lie in if I need to. According to my Fitbit my average night’s sleep has gone from 6 1/2 hrs to 8 hrs a night, and I need it.

And thinking about it, my balance isn’t wonderful.

With the current situation I have no idea when I will get a scan and my last bloods showed an increase in cancer markers again, but I have started to gain weight without changing my diet and I’m taking that as a good sign. I have wide spread bone mets and wide spread liver mets.

[flowersinherhair]

I took briefly while awaiting approval for another drug. it was horrible but tumors shrunk.

[library2019]

I was on xeloda April 9-20 it was the worst hands and feet peeling sleeping all the time diarrhea couldn’t eat pain in stomach went to er had ct ended up with bowel obstruction had nose tube in hospital 4days changed to adriamycin weekly so far no issues I was previously on paclitaxol with no problems if you can avoided d xeloda do it’s no life🌹

[Kimr2081]

So sorry you are experiencing these side effects. For me it was an easy drug to be on even though I got the hand and foot thing pretty bad. I hope they consider something to make you feel better.

Take care

[Skipandtwirl]

I too had a terrible time on xeloda at 3000mg a day. Didn’t matter if I took it with food or not..the bathroom tissues would hit middle of the night and things would be coming out of both ends...Miserable. Didn’t want to eat anything either because of extreme nausea. Kept throwing up my other meds which were important. I would read about all these other women who were on it thought it was so easy breezy...no side effects at all. I see now from some other comments that is NOT always the case. They switched me to an IV chemo every 3 weeks and my tumor markers have come down by 2/3 and I have almost no side-effects! Everyone is different and I would not continue suffering like you are...get your Onc to find another drug!

[BangorBelle56]

Thank you so ,much what was IV chemo. Have already had taxol for19:weeks everyand found that fine, but apparently can’t have it again until nov.