hi I’ve just started taking capecitabine 500mg x5 twice a day
Day 5 I’ve experienced within this time -nausea and vomiting , frequent stools, pressure around sinuses , temporal headaches and pain in lower back and hips and fatigue mostly afternoon.
Is this to be expected?
Will the side effects subside?
Any advice will be greatly accepted
Hi Jenhood,
I’m so sorry you are experiencing these side effects. I don’t have much advice to offer but sometimes your Dr can prescribe a med to help with nausea. You may also want to get your dose adjusted. I don’t believe the side effects should ever be as bad as you’re experiencing. My understanding is that it should be a milder med for side effects. My Mom is about to start this med next week and I’m hoping she avoids unwanted side effects. Take care and feel better soon.
April
I also just started Capecitabine in the last week. I was prescribed ant- nausea pills and have noticed I must have a little food ( yogurt) with the Cape. Seems like they can change your dose— lower-/ or 7 days on 7 days off.
Did you get info about Diclofenac Sodium? It is Voltaren arthritis cream and it helps to lessen hand and foot syndrome.
Hoping dr can get you reduced dose to relieve the side effects.
Thank you for the advice I will look into the arthritis cream for hfs
Hi, I have been on Cape since the beginning of December, 2 weeks on, one off. I have low neutraphils, so sometimes a two week break. I started on 3600mg a day. Was ok for a couple of cycles then the vomiting started, 9 times one day, even with anti sickness, metoclopramide. My dose has been reduced to 1500mg twice a day. I have had severe chest pains at times, with emergency assistance as Cape can give heart cramps. Fortunately that wasn't the case, severe reflux.I have found taking anti sickness 15 mins before breakfast then omeprazole during, then Cape at the end. My prescription says take cape with or within 30mins of eating. I make sure I have plenty of water with it. My sickness is much improved and only get occasional nausea. I have been lucky so far with hands and feet, but occasionally use urea cream. Fatigue is my biggest problem during the day, as well as disturbed nights. I would see about a reduction in your dosage it seems quite high.
My first staging scan showed reduction in tumours and markers, 3000 to 1585. Still high! I am awaiting 2nd CT staging scan results. Quite anxious!
You should not take omeprazole when on capecitabine. Switch to famotadine.
Hi Jen, I have been on it for a while. Main side effects are hands and feet cracking so they give you cream to apply twice a day to feet and hands which avoids it happening. Sickness tabs. Take with food at the same time, morning and then with meal in evening. Take Vit D K2 4000IU as it helps and also necessary for most people with cancer. Nutrition and a seriously healthy diet is required. You be surprised how pure food really helps you feel good.
I also take Propanolol for migraine and it also blocks cancer pathways so double benefit. Also lots of other stuff which has kept me alive as was given 4yrs max in 2016.
I have a molecular doctor friend and a cancer coach and others to help with research and guidance. The hospitals only do one size fits all approach which is understandable but there are lots more you can do which helps with side effects of chemo and slowing things down and in some cases into remission.
Hope it’s helpful
Dawn
hi Dawn. being on Propranolol as well, for many years both pre and post mbc, I was really interested on your comment that it also blocks cancer pathways! wondering how you learned this info if you don't mind me asking? good to know that perhaps I have had a benefit that I wasn't aware of. maybe could be used on more cancer patients if appropriate.
and yes, totally agree on the opposition to 'one size fits all' approach or what I refer to as 'cookie cutter medicine'😉. carole💛
I have done extensive research with Dr friend and based it around Jane McLLeland metro map protocol. She had stage IV at 40yrs old and was told she only had months. She is 62yrs now and cancer free. So through all the research I have covered alit of stuff. I have managed to slow mine down as was supposed to be gone by now according to hospital. That was 8yrs ago.
It makes scientific sense, not saying it’s the answer but the protocol helps everyone who does it. I am not as strict as I need to be as it’s hard to do everything required.
If you want more info then best to speak. I am in the UK. Let me know and we can exchange phone numbers or if in different country we can Skype.
Best
Dawn
HI Jenhood, I have been on capecitabine since last January. I started with 4000mg a day , 7 days on 7 days off. I had a severe reaction with Hand & Foot syndrome. After a process over the next few months, my Doc. Lowered then raised my dosage. I am now on 3000mg a day. It is important to take this medicine with food, within 30 minutes of eating, and spreading your dosage as far apart as you can. They want you to take 12 hours apart, which is pretty unrealistic, as a fuller meal, not just a snak works best for breaking down the medication. I too suffer from sometimes, extreme fatigue, bone aches in lower back and elsewhere, and mild H&F syn. And if my stomach hurts when it is empty, a small snak takes care of it, even if it's just a small glass of milk. I have been battling my metastatic B.B.C. for 5 years this month. I am greatful to still be on the planet. I am starting my second round of Xeloda on this 3000mg dosage, so I'm still seeing how it goes. Having the proper dosage for you personally is very important, so work closely with your Doctor. Also get plenty of rest, get off your feet if they start to bother you, and try not to over due. And stay out of the sun if you are not protected. Hang in there, it's a journey, and we'll worth it. There are new treatments coming up all the time. I believe a cure will be possible. Sending Hugs
I take the same thing but only 2 tablets twice a day. Other than some redness and peeling of finger tips and toes, no bad side effect. Maybe you should reduce the dose???
yes I had the same experience. I had to go all the way down to three twice a day before all of the nasty stopped. I mean, I literally could not leave the bathroom so get hold of your doctor. Tell him what’s happening and yes, they can give you anti-nausea and a diarrhea, but for me they didn’t work all that worked was cutting me down dosage! Good luck keep us informed!
Hi!
I experienced all the same and more. It was too much for me so I stopped it. Best of luck to you!!! Hopefully, you’ll begin to tolerate it.
Jody
I got my oncologist to use the 7/7 schedule instead of the 14/7 schedule. Research shows it is just as effective on the cancer and side effects are much, much reduced. I am also on 2000/day (two pills am, 2 pm, 500 mg each). My only side effect is fatigue. I have taken to usually eating a bigger meal in the morning, including some protein, and taking the cape 15-20-30 minutes after eating so my stomach is not empty.
Number one dosage change: try to get your doc to lower your dose. I was on 1000mg twice a day for 1 week one on and 1 week off. Doc finally lowered my to 1000mg in the AM and 500mg in the PM. This did help my hand & foot syndrome. I also used urea cream at 20%. Others have gone up to 40%. Use it as you would like. After my feet were hurting when I was standing, doc took me off of it. Other than the H & F syndrome it was pretty tolerable.
I hope your doc will help you with some changes so you can continue on the med. I was on it for 9 months.
Hugs,
Sharon
hi I started this at the end of January. At first my dose was 3000 mg per day. I was lucky to not have any gut/bowel issues but I got hand foot syndrome straight away. I do one week on and one week off but initially my doc let me not even finish the first week on to get my hfs to calm down and under control. Each round we cut the dose more to wear the hfs is now tolerable and easily managed. I only take 1500 mg per day for the last several rounds. Between starting and 2 weeks ago my tumor markers had dropped by 1/2 each month, until they plateaued last test. My 3 month scan showed lung Mets resolved but others are simply stable, but I feel good, just some afternoon fatigue every day is my main issue. You need to call your doc and describe the symptoms so you don’t suffer unnecessarily . Oh I also got mouth sores the first couple of rounds but that’s not a problem with the lower dose. Call your doc. I hope you feel better soon and they lower your dose. Quality of life is important!
May be doing IV chemo for the first time. Need tips - really freaked out!
Working during treatment 
Flu and Ibrance pause or not?
Back home and safe from the NSW fires.
