All about Xeloda

RonnieH - I have a desk calendar that I keep with the start date and the end date.  I write down what time I take the X so that I remember to take it.  I take Nexium on a daily basis and thyroid medication so I take them when I get up, usually 7 or after, I also take Zofran on a regular basis when I am taking the Xeloda, which my doctor said to take every 6 hours so I keep that marked on the calendar also so that I remember what time to take it.  By taking it on a regular basis I usually do not have much of a problem with nausea.  I know most people on here say to take the Xeloda 12 hours apart.  I take mine at 8 or 8:30, either during my breakfast or after and then at supper, usually at 6 or a little after, the 12 hours does not seem to work out for me and I have never been told it has to be 12 hours, but I try to keep it at least 10 hours or more.  I have also kept a journal of how I felt everyday while on Xeloda and then when I have my week off.  I found it helpful, but I do not keep it anymore as I have been on it for 2 years and kind of know what to expect.  I do have to say the desk calendar has helped me a lot in that I mark down the weeks off and on, that way if we are invited to something or plan on going somewhere I can look ahead several months to see if it would be a good time for me or if I would have to decline.  Hope this is helpful. 

Hi RonnieH. I too have to take other meds. My schedule is . 8am Ibandronic acid for bone mets. 8.30 Antacid tablet. 9am breakfast. 9.30 am Xeloda. I take Rivaxoban for blood thinning late afternoon and have my evening meal at 7pm. 2nd lot of Xeloda at 7.30. I am 2500mg twice daily and on 8th day of second cycle. No side effects as yet. My bloods are spot on and my immune system is really good. I eat plenty of fresh fruit and veg and my onc says she thinks that because i take Xeloda right after my meal it has kept sickness at bay. I use Aloe vera and vitamin E lotion not cream as I think this is absorbed quicker and leaves hands and feet cool. Trick is not to rub in too hard and if possible keep feet and hands cool. Cheers. I hope this helps.

SyrMom, so so sorry to hear this news.  It really rocks you back on your butt when you get progression.  Once you've digested this news and reconciled it, you'll have the strength to do what comes next.  Sending you a gentle hug

Linda

SyrMom- I am sorry that your world has been rocked once again.  Hugs to you. I know that there are many more drugs out there that can work so I am wishing you the best possible on your new journey.  Keep us posted.  For now, konw you are in my thoughts and I am praying for you.

Saskie & SophieJean, milk is a deinite NO while on Xeloda, first instruction from my MO. Can consume other dairy products, especially saltfree cheese & plain yoghurt but without other protein (meat, eggs, etc) in the same meal as it prevents iron consumption in the liver. Xeloda's main process is in the liver explained MO. 

SyrMom, good luck with the next chemo. 

hugs, Ebru

Chris, hope it's not a major problem & over soon.

Sophie, this news is especially to motivate you. Yesterday I got TM results back. Not only TM's down to 44,50 from 57 ina month, daily dosage is decreased to 2000mg/ day 14/7, now hopeful for less SE. Hang in there lady!!! ☺ btw, how awesome is that to have a small break from the cancerland...happy for you.

Hugs,

Ebru

Yes, I was exposed to sun for half an hour a couple of weeks ago. The next day my face, scalp & neck especially and my arms were covered in rash. Normally I avoid the sun as much as I can. The facial rash is there anyway as a SE, but the sun just blew it up!

Was glad it recovered without any more medication than my previously prescribed Bepanthol in a couple of days.

Since the instructions strictly underline no sun with Xeloda, I am doing fine as long as I obey this.

Hugs,

Ebru

Thanks Ebru-I'm finding that there are a lot more quirks you have to pay attention to with Xeloda-wish my Dr would have pointed those things out but I guess everyone responds differently.  I wear SPF shirts/sunscreen and can still get burned.  I'm wondering if I can adjust dose and be ok or not.  You seem to have it dialed in!

Thanks, Gail

Hi. I have had same problem with sun. My rash was made up of tiny blisters that have now crusted over. Im on day 12 if 2nd cycle (14/7) and have just started with hfs problems. Do the hfs symptoms get a bit better on week off? Hope so. Going away for few days. Thanks Ebru for info on milk.

Kebab on the week off we do have the chemo in our bodies. In fact, since MO asks for bloodwork by the end of the week off, I grasp it is when X has actually finished working on that cycle. So maybe not be so suprised about it after all??

Ebru

RangerMom, my 14/7 tx is:

1-6 cycles : 3000 mg/day

7-9 cycles : 2500 mg / day

10. cycle: 2000 mg/ day



The cumulative effect is a challange, just on my second day today & I feel fatigue, sleepy, achy, etc. So lower dosage hasn't helped me with less SEs. But still happy it's working so far. My DS & DH are the reason I keep going. And not having the classic chemo look makes me motivated. All chemos have SEs so better of the worst so far for me.

Lowering the dosage was due to my TMs dropping quickly, rather than me suffering badly from SEs. Of course I do suffer from SEs, but comparing other chemos I have been following online, my SWOT analysis led me to accept & hush about them on MO appointments.

I even take painkillers before some appointments, so that I don't lie during examination when she asks "do you feel pain here?" He he..

Hugs, Ebru

November babies are cool, I am a scorpio / lion myself, born in November! 😎Best of luck with scans. Oh how wonderful the baby smell is, best therapy for sure 😃.

Hugs

Ebru

thanks Sue and Ebru. I went for a walk today and the fresh air and last night being out with my daughter helped bring my spirits up. I think I've got scanxeity right now too on top of the cumulative effect. My doc said I could take a break from the X but I'm afraid to till I find out what the scans say. If there's progression, i will come off the X anyway to go onto something else. 

I hope you don't get side effects too, would be awesome if you could sail through it without too much problem.

Rangermom,  we are almost at the same point in tx with X. I too am experiencing more fatique, and to top it off, I pulled my back last night for the first time. Don't know if its spinal (disk) or muscular but i'm in alot of pain from that.

I'm to the point that by the end of work, i'm exhausted and can not cook , clean , or help the kids with homework.(physics takes a lot of brain power). I see my MO again on wednesday, and hopefully she can let me know if the spot in my neck is indeed progression.

I wonder how many of you are still working full time. I'm on my feet all day and use my hands constantly with letters, postage and money. counting money is the worse, painful and slow. by the time i come home, i'm exhausted. I'm thinking of going out on disability retirement as I have 28 yrs in the postal service. I have mixed emotions, i never was a quitter, and this somehow feels like quitting. My DH says I shouldn't feel that way, that if its a matter of work or family life, family should come first, besides the fact that we both know of many people milkimg the system of disability when they are fully capable of working. I'm only 50, and I really don't know how many yrs I have left. I'm somewhat of an abnormality with the way my bc has progressed so rapidly, and even the dr's don't know if meds will work or not.  1, 2, 10. or 15 yrs??? no one can predict. I would hate to have spent my final yrs only working, but i don't want to have these be my final yrs. I still feel like I have many yrs left.

Sorry if this seems down.  It's really not, i'm just trying to figure out what the best is for me and my family. I'm somewhat pragmatic (and controlling) so this decision is huge for me. I've looked forward to retirement for so long (5 1/2 yrs to go) that it would be a shame if I never got to experience it.

I hope all of you on X are coping well with the se's. this round, fingers seem to be the worst.

One last question... so far i have mets only to chest wall, so they're calling it local/regional recurrence. When further mets are confirmed, how did you first realize it? Any pains, odd ocurrences, or subtle hints that it was progressing before scans confirmed it. With every ache and pain, my mind goes to that dark place (although it's probably just old age creeping in).

Thanks for your imput.