Starting Xeloda

[Maddyandherkittens]

Hello Folks,

I am now officially metastatic. For the past several years I was considered "Advanced Local Recurrence" with lesions on my chest wall, I also took Ibrance which is one reason I was on this site.

Now I have mets to the bone. A lesion in the scull bone right on top of my head, and a rib and the clavicle. There may also be issues with my uterine lining.

I will start Xeloda this Wednesday, and may have targeted radiation on my head.

I am wondering what everyone's experience has been with this drug. I know everyone is different, but I was concerned about the peeling and burning on your palms and bottom of your feet. Also, GI upsets.

Thank you for your input. You folks always teach me and inspire me.

Maddy

[Fiercefighter13]

Hi there! I’m starting my fifth month on Xeloda. I had a lot of nausea the first week on it. That side effect has gone away on its own and I’ve had no gastro issues since. My biggest side effect complaints are fatigue, which my doctor has prescribed Ritalin for and extreme foot pain in both feet. My feet aren’t peeling but are red hot and the bottom of my feet sting and burn and the inside of my feet hurt like they are bruised. Still, this has not stopped me from walking my dog daily and has not kept me from most of my usual activities. I had no side effects at all from Ibrance, Letrozole, Fulvestrant, Anastrozole or Verzenio but sadly they all stopped working. On a bright note, Xeloda is doing a fantastic job of killing my cancer (bones, stomach and colon, lobular er/pr+). I hope you do well on it, and have a good long run with it as well. Take care and best wishes!

[Maddyandherkittens in reply to Fiercefighter13]

Thanks so much, that is very helpful.

[Bettybuckets in reply to Fiercefighter13]

working for me too snd ivsm lobular!

[Adele_Julia]

I’m on Xeloda and definitely use Urea cream 20% strength on hands and feet. There is an awesome Xeloda Facebook group to join as well

[Maddyandherkittens in reply to Adele_Julia]

Thanks for the tips, I will definitely look into the Facebook group.

[Antares12]

I'm going on my 3rd cycle of Xeloda. I have some numbness in my toes, but no peeling or burning. My main problem is fatigue. I'm anemic and had to have a blood transfusion two weeks ago. They're trying a new drug to help my body make more red blood cells. Early on I had problems with heart burn. Prescription strength famotidine helped that.

[Bettybuckets]

hi Maddie sorry about your progression. Sucks ask this time of change always leads to anxiety but you are still on oral meds so that is to be savored for whatever time you get on xeloda. I had bone only disease until Xmas when they finally saw it was in my liver and had been growing in my liver for a year… I have lobular which is kind of see through so finding the progression was difficult. Markers were soaring up to 500mg for a while. So I started xeloda at 3000 mg per day which is 3 in morning 3 at night… I was told that the hand foot syndrome would be cumulative and would be bad by 4th month.. so I did some last min pickle ball just as I went onto the drug- don’t make that mistake.. my toes blistered so badly from the PB thst I ended up in a sheep chair if I had to walk any distance! Less than a month after starting, I travelled to NZ ( wheel chair through JFK airport! While in nz my oncologist over there suggested I cut down dose… this allowed me to be pretty active with my friends with long swims in the ocean also helping… and long e-bikes rides and generally had a blast for 7 weeks. No GI upset just hot burning sore feet which is a drag but I often feel grateful that still no IV and no fatigue like from Ibrance and Verzenio… snd no nausea. So I am just going to ride this as long as I can. I just got my first scan in exloda and got the thumbs up to continue. The ascites and bladder neck thickening all improved and the multiple scatter shot liver Mets aren’t worse( 7mm) so we battle the on and my very old oncologist gave me encouragement to GO! I am off to see my son in Switzerland with my hubby next week for a few weeks. I am allowed to cut down the n my pills by one per day hoping that will help with walking which is pretty hard. But I checked into e bike trips so will try to do that. And also though sitting around more, I swim laps now and that keeps me fit enough. So I don’t want you to dread this new treatment but enjoy your life on it to the fullest. I did just get a gift of a small foot bath with Epsom salts and that is so helpful and I do use 49?% urea cream .. and I immediately bought much bigger men’s shoes as your feet will swell and hurt in your old shoes. So that is the some total of my wisdom but hope it helps!

[Maddyandherkittens in reply to Bettybuckets]

Good tips and advice. I can do this 🐱

[Iwasborntodothis]

had good luck with this drug so please check my posts for advice

[LDR1]

hi Mandy, I’ve been on Xeloda 5 months and after some tweaks to the dosing & schedule it’s going really well, I started off with 3000 mg/day, 14 days on and 7 days off. Developed foot pain and peeling around day 10 each time despite dose reductions. Now on 2000mg/day for 7 days on / 7 days off (supposedly just as effective, though it feels like a lot of time off) and it’s working great - zero foot issues. Have not felt any fatigue, GI or other issues even at the initial higher dose. In fact I feel more energetic, positive, and hair is healthier than all the time I was on Ibrance / Verzenio. Most importantly it’s shrinking the cancer substantially. I hope you’ll have similarly good results 🙏🙏💕