Hi everyone hope all is well
Well looks like I will be starting on xeloda next week not too happy being on chemo and was hoping you can share your experiences like did you loose your hair gain or loose weight and any side effects and what did you do to help with side effects also did you have good results and how long did it work for you? Thanks everyone so lucky to have this group.
Hi Barb. I started on Xeloda about 8 weeks ago. 3 days in and I immediately got hand foot syndrome. After week 1 they took me off for 3 weeks and then started me on a lower dose. It only affected my hands but I'm always doing dishes and cleaning so they were wet and used a lot. Right now I am doing great. No nausea at all. The only thing I notice is after I take my medication I get very bloated for a couple hours. No pain just a bloated feeling. Absolutely no hair loss or weight change and I have a good appetite. I hope it works for me because it's my last resort. Right now I'm not feeling too confident. My pain is increasing a lot.
No experience of this but I really hope you get on well with it.
Best wishes
Thank you 😊
Hi Barb: I am supposed to start on Xeloda also. My oncologist wants to start me at 1000mgs. dosage.
She assured me I would not lose my hair and the hand and feet problems can be handled with cream. There are other side affects as well.. Not everyone gets them.
Cheers, June S.
I’m on it now...have just had one week, but the side effects haven’t been bad so far....just fatigue....I also have a lack of appetite and other issues, but I think they’re left over from Afinitor, which really knocked me out. AND the Xeloda has improved my breathing by at least 80%, which is amazing.....I couldn’t go up the steps without three rests....now I can walk right up! So I’m very happy with it....AND it’s a pill, which makes is so much more convenient! So I hope you will be happy with it too.
Thank you Good to hear I have had shortness of breath hopefully that will improve with me also. Great to hear the bright side of these meds.
Barb, I wish you well with the Xeloda.
Barb, I have been on Xeloda now for a year. It is working well as all of my scans have been stable. There are some positives after being on hormonal therapy for 4 years. I now have my libido back, my hair has grown thicker and eyebrows have grown back. (I was on Ibrance for 4 years).
Now to the side effects. I battle hand and foot syndrome. I was on Xeloda for 8 months before and taken off to be put on Ibrance. Then, my feet peeled so bad I couldn't walk. I learned to keep both hands and feet well moisturized! I use Nubian heritage Mango Butter infused Shea Butter. My oncologist is amazed at how well my hands and feet are doing. They still peel some, but are doing well. I sometimes wear socks and gloves to bed after lotioning up. Another side effect that has been bad is diarrhea. Imodium is my friend. I always carry it with me. Nausea has been bad at times. I also get very tired. I am very thankful that Xeloda has worked so well.
If you have any questions, please message me.
Asha
Thank you glad to hear you are doing well on it😊 Guess Imodium will stay my friend had to take it frequently on Verzinio
Don’t forget to ask for Celebrex google it with xeloda x
I googled but can’t find what the Celebrex is for? Can you help me out with that please.
Hope all is well with you 😊
Hi Barb
Me too!!
I start Monday...1000 mg twice daily...I’m feeling rubbish at the moment as the antibiotics I was prescribed were the wrong ones so I’m still weak and run down from the UTI
Anyway apart from dreading the side effects I’m sort of relieved there’s a plan in place
Let’s hope we both fare well on Xeloda...I’ve asked for antiemetic tablets and I’ve ordered some udder cream...not much more I can think of
Good luck
Barb xx
Hi Barb, I take Xeloda 1500 mg twice a day; two weeks on, one week off. I just finished my second cycle and am on my “off” week.
The side effects I have are foot blisters which started on 2nd cycle and a tightening feeling on my hands(no blisters). I prepared for the hand/foot blisters by using Udderly cream about 2 days prior to starting Xeloda and have been using it on my feet throughout the day. I use Udderly on my hands only twice a day since I don’t have blisters but I do use Vani Cream throughout the day.
I wear thick socks along with padded slippers to ease the foot pain when walking in my house. I have hard wood floors. The other thing that has helped recently are moisturizing gel socks. I got them two days ago from Amazon and I love them. The pair I bought were from a brand called Emily Stores. I’ve worn them for about 15-20 mins 2x a day during my zoom calls. Last night I wore them for the first time during my hour long pilates class. The gel padding on the socks were the right thickness to help me use the equipments without any pain or discomfort. The rubber grippy thing at the bottom of the sock prevented slippage.
The side effect I wasn’t expecting was darkening of my fingertips. My onc said this can happen with Xeloda. My dermatologist who works with cancer patients told me to use Amlactin cream which contains alpha-hydroxy acid (AHA) to help lighten up the pigmentation. Amlactin is over the counter and I got mine at Bed Bath and Beyond.
Apart from the blisters and pigmentation, I have had no other side effects.
Good luck with your treatment and hopefully you won’t have too many side effects.
Thankyou for all your suggestions what is udderlycream where do you purchase it? Do you think Vaseline would work I use it on my feet sometimes with socks on before bed to keep them from getting dry
Hi Barb and other ladies reading this post! I was on xeloda recently for 5 cycles. I was on 4000 mg a day the first xyxle and then dropped to 3500 mg by second cycle when I had bad foot syndrome. I knew to moisturize well, but what did me in was a long walk I did in sneakers which had never rubbed my feet or caused blisters, but I guess there was some friction and I paid a high price. I had my feet on ice for 4 days following the walk. I buried those sneakers and never had a repeat of the blistering which had occurred. One trick to really get the cream in is to wrap some plastic wrap around feet before topping qith socks before bed. This prevents socks from absorbing half the cream.
So first 3 cycles markers stayed stable. 4th cycle markers dropped 10 points. Then POW....markers doubled in 4 weeks so about 6 weeks ago I was put on next treatment which is IV chemo Doxil. Do not take xeloda on an empty stomach. In found having yogurt coated my stomach well enough to take the pills in the morning and have no irritation with GI tract. I ate smaller meals and avoided bloating this way. I also drank a ton of water and continue too. I hope you have good results, little if any side effects and that this helps. Faith.
Thanks for the advice hope all is well
Keep us posted on how you are Barb. How is Bugsby? Faith
Thankyou so much good info
Hi Barb -
I bought my Urea cream from Bed Bath and Beyond.
Btw, this was an interesting research article on Urea helping to prevent hand/foot.
breastcancer.org/research-n...
Thankyou
I was on this for 3 months. I had a little fatigue but my main issue were the effect on hands and feet. My hands weren’t painful but turned scarlet and my finger tips were swollen so I had problems with fingerprint recognition with various gadgets. The soles of my feet were also affected. I love walking and went on a short 3 mile walk in my usual walking shoes and when I got back to the car I had a deep blister on each each sole at the heel. I got gel inserts for my walking shoes and it solved the problem. But apart from that I found it quite easy to take.
Hope you do well on it 😊
Bear in mind when you read this that I have multiple drug allergies -- even developed an allergy to my allergy medicine. I was on Xeloda 5 pills twice a day, 2 weeks on, 1 week off. The 2nd week of the 2nd cycle, my side effects intensified greatly. My hands were so swollen and sore that I couldn't even turn a door knob. My nausea/vomiting/diarrhea got so bad I had to call an ambulance. After most of the day in the ER, I was admitted, hooked up to all sorts of IVs, had an anti-nausea patch, potassium and phosphorus levels dangerously low, heart rate increased to 160 every time I had to get up to use the bathroom (10 times in one night at one point). Docs finally got everything under control and I was discharged after 9 days. Oncologist reduced my dosage to 3 pills twice a day. I've just completed my first round at that dose. Other than mild nausea, mild hand/foot syndrome, and some fatigue, I'm feeling pretty good. The real test will be the 2nd week of the 2nd cycle. 2nd cycle begins Dec. 28. (I like that the off week is this week -- just in time for Christmas!)
Xeloda
