Xeloda

[SKoter]

Hello, what’s your experience with Xeloda? What are the most common side effects you experienced, diarrhea, nausea, vomiting, abdominal pain, hair loss, etc…? I’m also searching for co-pay assistance program. Unlike Ibrance or Verzenio, I don’t think I saw one provided by the manufacturer, I could be wrong… Which co pay assistance program do you use and recommend? Thank you so much!

[TammyCross]

I was on Xeloda for about nine months, too long, because it did nothing for me, but it was easy to take. My hair was okay, although it got fuller when I stopped; didn't have gastric problems. The main problem I had was fatigue. Pretty bad. Interfered with my life, but I wasn't sick in any way.

[SKoter in reply to TammyCross]

ugh, that doesn’t sound very good… Hope you are now on something works better for you. Thank you for sharing!

[TammyCross in reply to SKoter]

It really should have worked. It was a surprise to oncology that it didn't. Hope it works for you and your side effects are as minimal as mine were.

[Bettybuckets]

I was on it for 18 months.. loved how portable I was… compared with the chemo’s I have been on since…. But the HFS really was bothersome. Had to give up most walking and going into stores etc. I had my hubby to run in and get groceries and some days of the month were worse… on those days I would even ask him to get an item across the room. They tried putting a big dose but eventually I was tolerating 2000 mg BID I think. I have some I could mail to you… but I leave for Nz in a day for 6 weeks… I just got Enhertu and it is kicking my butt.. I csn mail to you when I get back..

[SKoter in reply to Bettybuckets]

oh whoa that’s a little strange that hand foot syndrome is associated with lesser dose! Thank you for sharing! Hope enhertu is working well and hope you’ll start feeling better very soon. Have a wonderful time in NZ 💓

[13plus in reply to SKoter]

A misunderstanding. Lower dose decreases the symptoms. I took it for about 7 months. I started full dose but the doc dropped me down quickly when I started showing "red" feet earlier than usual in the regimen. I think she might have meant they tried giving her a higher dose

[SKoter in reply to 13plus]

Make sense. Thank you for the clarification!

[13plus]

I got assistance for the xeloda co-pay but someone from the hospital called me to arrange it for me. Perhaps try talking to the social worker at your hospital. Mine helped me out a lot with applying for grants for bills when we were going through a tough time

[SKoter in reply to 13plus]

Good idea!

[Bella_mum]

I’m just on the 4th cycle. Started on 3000 a day (split into 2 doses) but because I had trouble with my feet (hot, tender and blisters) on the first cycle my dose was dropped to 2600 and since then side effects are manageable.

Very fatigued but just sleep more.

Some stomach cramping which is nasty but it doesn’t last long (during the night).

I had my first scan last week and liver meta have reduced so we will continue .

Drink lots of water. Don’t take on anymore stomach.

Good luck

[SKoter in reply to Bella_mum]

I’m glad to know that you are able to manage the side effects well and so happy for you that it’s working for you! It’s encouraging to hear. Thank you for sharing!

[HelenWi]

I’ve been on Xeloda (plus Tukysa for brain Mets) since September. It has had a dramatic effect: TM’s down to 79 from 1389. Petscan looks better than anytime since diagnosis. (Main concern remains brain mets so need to monitor every two months.) I did have gamma knife radiation in August so that could have contributed to TM drop but I really think Xeloda is the key here. I hope it continues to work for a while!

Regarding SEs: I have been applying Voltaren cream (Diclofenac) to hands and feet, plus moisturizers. I have sore and occasionally cracked fingertips only on one hand, guessing it’s because I have lymphedema on that arm. So my use of Voltaren cream is not really conclusive, but I am continuing with it nevertheless. I don’t have any other easily identifiable side effects.

I hope Xeloda works well for you! God bless !

Helen

[SKoter in reply to HelenWi]

Oh whoa, that’s great and really encouraging! I’m so glad hear that it’s working for you well. Thank you for sharing!