All about Xeloda
Comments
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((Rangermom)) sorry to hear this…I'm thinking of you.0 -
Wednesday marks the end of my third cycle, 1800 mgs 2x a day, 14 on, 7 off.
Hands starting to crack and peel at the fingertips, and my right thumb aches. Of course, I'm slicing up limes for margaritas tonight.
My feet hurt, like I've got a lump of hard dirt under my soles, and my toes are red, swollen and downright ugly. One toenail has turned purple.
I got my first big wave of nausea and almost barfed on my way home from my morning run, and I didn't have the energy to sit up straight for the rest of the day.
I laid on my bed this afternoon as if it were a giant magnet and me a steel slug.
gah.0 -
rangermom - so sorry about this icky development. What is next for you? Please keep us posted...0 -
Rangermom, I was taken off X this month too and will be starting on a trial in January. What are you headed for next? Please keep us posted. Hopefully you'll have success with new doc. and new treatment! Blessings to you.
Sue
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sorry to hear, RangerMom, good luck, big hugs.
Saw onc yesterday & he put my morning dose up from 1000mg to 1500, & the evening up to 2000. Had very few se on the 1st cycle.
Great to hear about the hair, Karen & Loveforlife, thank you. I am appreciating my funny hair that looks like a really bad haircut, but it's growing still, I think. I still sometimes get 'the look' from people, that kind of compassionate, I know you're on chemo look, which is ok, it's much less these days. Hair makes a difference!
I get your ambivalence about the scan, Karen, do you have Christmas with the fear & uncertainty, or have Christmas with possibly bad news? I would wish for you it were Christmas with good news! I always dread my scans but would rather know what's going on then let the not knowing do my head in, but then, patience has never been my strongest point!
Got to go sit in my lazy boy & watch some cricket now, maybe doze off a bit, mmmm0 -
calico at, happy to hear about your tumor markers descent, always nice to hear. My onc doesn't put much by tumor markers & only tested mine once (normal) & they found the nodules in my lungs at the same time. So we've going by scans alone right now.
I got given Xeloda cream by the chemo nurses, no ingredients listed, so no clue what's in it & no luck with Dr Google. But I'm using it & so far no hfs, but have also heard that udder cream is good, let us know?0 -
The Udderly Smooth Udder Cream came in the Xeloda packet for new Xeloda users. It's fine, but I don't think it's the "be all and end all" of the creams. I'm partial to the Eucerin Eczema Cream because it seems creamier, more heavy duty, but what do I know? Maybe there's something in the udder cream that makes the onc like it in particular.
I'm still scratching my head over my onc giving me carte blanche to stop taking the Xeloda a second week anytime I want to without asking him. Maybe it's part of his trying to balance quality of life with effectiveness. I do wish he'd talk more about why he makes these decisions.
xoxox
Calico0 -
CalicoCat, I also received Udderly Smooth hand cream in my Xeloda starter kit. I don't think it's anything special either. I suspect there's an agreement between the Udderly Smooth company and the Xeloda manufacturer. Udderly Smooth supplies free hand cream and Xeloda distributes it so cancer patients think this is the correct lotion to use. .
Since starting Xeloda I've had lots of skin peeling, cracks and bleeding on my fingers and have been religiously applying creams and lotions of all brands and then putting on cotton gloves to sleep in.
No improvement whatsoever.
As a matter of fact the only thing that helps with the deep skin cracks and the pain is to apply Krazy Glue to the worst spots. The glue stops the pain and seals the open cracks in my skin.
I'm seeing Oncologist next week and I'm going to ask her if she can prescribe some kind of heavy duty cream to help heal these hands. Maybe there's some kind of ointment meant for burn victims? The over-the-counter lotions and potions simply aren't helping at all.
Kessala
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Okay frequent lurker and infrequent poster here. I just wanted to address CalicoCat concerns. I started on the 2weeks on and 1 week off cycle but after 2 months or so I had terrible foot pain/blistering. Onc moved me to 2 weeks on and 2 weeks off and reduced dose. I have had 2 years of this and, although things may be brewing now, it was fine for 2 years. I also have taken an extra week off once or twice when just felt I had not recovered enough. Also I believe that all the creams, etc, just help with the dry skin but not the real problem of H&F which is the blistering/sunburn feeling. Anyway, take care all. Tomorrow I get MRI results after a bout of back pain so not sure if I am staying on X.0 -
Hi, Kessala, when my hands were at their worst peeling, the Nurse Practitioner at the onc's office prescribed Silver Sulfadiazine 1% Cream, but there was nothing magic about that stuff either. I do believe it is used on burns, but doesn't do much good in our situation.
Thanks, thisisme, I appreciate hearing about other oncs who are flexible, and that it's not just mine. It just seemed so weird. Here's hoping that your MRI looks FABULOUS!
xoxox
Calico0 -
After two cycles of Madame X, my CA 27.29 has dropped from 170 to 101! I haven't had a drop anything like that in the 3+ years since I recurred. I'm doing 7/7. In the middle of my third cycle now, and will have labs again on Wednesday.
I also have my year-end PET on Monday. My May scan was murky and puzzling, and my September scan was straight up bad news, so I'm really hoping this one will tell a better tale.0 -
Sue thank you for welcoming me back. I actually have some good (hopefully) news to all X sisters ( wow just noticed it's like X Men). On my last visit to MO this week, we decided ( mmm. .. Actually I persuaded MO) to go for a try for 1000mg daily, 14/7. I have already been on 1000mg the first week, 2000mg the second since our last trip. The rash on my face spread more even on that dose.. Since the TM's look stable for now ( not progressing at least) we will try this new dose this month! Fingers & toes crossed it works..
Dealing with the hfs on my face instead, I found out Sebamed Q10 eye cream (little tube) works absolutely better than the prescribed creams.. So I use it on my entire for some time now. Well it is rock star daily facial cream as well. My skin improved since using it. No more spending lots on day / night / weekly creams in fancy packages
maybe try it for hfs as well????
Rangermom, virtual hugs dear. So not easy to even share the news, I can imagine. Hope new therapy helps you better than anything you've tried dear. Thinking & praying for you.. Hugs, hugs & more hugs..
Ebru0 -
Fabulous, Lulubee!!! Congratulations!! My CA 27.29 has dropped 50% after 2ea 14/7 cycles and 2ea 7/7 cycles. I'll get a scan in 3 weeks and am also hopeful to see regression. So far, my tumor markers have been a good indicator of what's happening met-wise.
Here's to kicking some cancer butt!!!
xoxox
Callico
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hi all
First of all, congrats calico and lulube on the falling TM numbers; ebru. -glad yours are stable!
I have had good news and bad se's - not sure what is going to happen next. My CA27/29 and CEA markers are going down, and after my 3rd cycle of 14/7 X my CTCs were at 0! Almost afraid to put that in writing, as it has bounced up and down so much during the past few years. Nonetheless it was great to hear that (non)number. However, my hfs has gotten really painful and my onc had me stop midway through my fourth cycle. So - now what?? I will talk to him next week and I wonder if it would be better to stay on the same dose with a 7/7 cycle or reduce the dose and stay on a 14/7 cycle. Any thoughts or experience with this?0 -
Rangermom- I am hopeful that you have a smooth next journey. Hugs to you. You are in my thoughts.0 -
Hi rangermom. I will pray that u get thru next trial safely.
Big hugs XXXXXXXXXXXXXXXX Helen0 -
Hi all X ladies. I am now half way thru 6th cycle and my bloods are really good. but most important there has been a significant drop in TMs again. HFS a lot better on lower dose. Bring on Christmas!!!!. See onc on 3rd Jan.
Hugs to u all. Helen0 -
Hi Ladies just a question for you, I was on Aromosine for 3 years, then it failed to work, so my onc. put on Xeloda, I have been on it since Oct 2012, I was so tired of feeling crappy all the time, and my hands and feet have gone through the burning, peeling, and now skin on hand splitting open from pressure. So I asked the Onc on Wed. if I could try a Hormonal again, that maybe the Xeloda had given my body a jump start, and she said yes I could try Arimidex and see how it goes, now I am in a panic, thinking I did a stupid thing, especially reading the side effects which sound even worse then Xeloda. Has anyone gone back to Hormonals after Xeloda and had success. I know its a wait and see game. but maybe i made a big mistake. wondering.0 -
I don't meet the qualifications of going from Xeloda to Arimidex, but know it's not unheard of. I read in Dr. Susan Love's book recently that doubling back and trying something that failed before is done frequently, and often with good results.
I'm on Xeloda now, and was put on Arimidex after I completed my original chemo. I had no negative side effects from Arimidex, or any of the hormonals, for that matter, so I may just be lucky that way. I think it's definitely worth trying. This H & F stuff can get to be too much.
xoxoox
Calico0 -
Super, Helen, that calls for a VERY MERRY CHRISTMAS!!! Congratulations!!!
xoxox
Calico0 -
I finished 2 cycles of X with minimal SE other than fatigue. I saw my MO today. The good news is TM is down! My mobility and pain have been improving, so it was great to hear that. However, my "bone marrow number" is too low to start the next cycle as scheduled, which is tomorrow. She said that it needed to be above 1.5 but mine was only 0.9. So I am to start the cycle on Wed, which gives 4 extra days of break. Has anyone delayed the treatment because of low blood counts? Did it happen cycle after cycle or just one off? I am on 1500 mg twice a day, 14/7. I am told that 1500 mg is low dose for me.0 -
Even before BC treatment, I always had low neutrophil count. I am regularly at about .9 and the protocol at my hosp is to not give if under 1.5. Once a locum onc had me wait 4 days, retest and then start, I am not sure I made it to 1.5 that time, but I started anyway. Another time I was a bit lower and was about to travel on holiday so got a neulasta shot but I think the X has very small impact on WBC so it is not usually a concern. There is nothing you can do to improve your counts. I have had a few times when I have delayed my X cycle (I was going to wedding and wanted to dance all night without HFS, felt I hadnt recovered from last cycle, just wanted a break, etc) and am now 2 years in an still good MRI results. I am 2weeks on and 2 weeks off.0 -
Have any on you ladies heard of taking Xeloda on a daily basis without a break at all. I live in Canada and my onc has never heard of taking a break in between weeks. He has prescribed 2900 mg a day, split in 2 doses of 1450, one in the morning and one at night. I have been reading all your posts and this seems unusual.
Hugs, Karen0 -
Hi, if you go to the Xeloda website, you'll find this:
Usual Xeloda Treatment Regimen
That said, my oncologist has been very flexible, starting me on 14/7, giving me 2 weeks off, continuing me on 7/7, and now has told me I can have 2 weeks off anytime the H & F gets too bad. So maybe if you printed off the recommended dosages from the Xeloda website, it might inform your oncologist.
xoxox
Calico0 -
checking in to say "goodbye" and "good luck" to my Xeloda sisters. Unfortunately my liver is just too far gone to take Xeloda (or any other chemos) anymore. Doc is trying a last ditch effort with Affinitor/Aronasin, but doesn't seem to hold much hope that it will slow down thus runaway train of liver progression.
But did want to wish everyone luck on Xeloda -- I think it was a very tolerable regime and can be a real cancer @ss-kicker, just not for moi!!
Take care and good luck!!0 -
hfs on your face, you poor thing, Ebru, is it not unusual to get it there? I'm into the first week of 2nd cycle and have had quite a bit of nausea (short, sharp episodes) and some really wierd vision disturbance with some vertigo, and feeling thick headed. If I tried to shift my focus I couldn't re-focus, and felt kind of dizzy. It happened twice today, not before. Am wondering if this can be a se of X or should I be worrying about it being something else? I guess I'll guess I'll keep an eye on it and if it happens some more I'll call the oncology cinic. Seriously not nice. It happened this afternoon when I was driving my scooter and I had to stop. Scary.
Good news Helen, keep going there girl!!
Karen, have not heard of daily X with no time off, only 14/7 or 7/7. I'll start my next cycle 2 days later and my onc says I could even go with an extra week break if I want. But I want to stick to the schedule we have unless it just has to be changed. I'm on 1500mg morning and 2000mg night, 14/7. But I guess your onc has his reasons, worth asking?
Am getting ready to go up to my sister on Wed for a family Christmas, which I'm so looking forward to.
I wish everyone a loving, happy & healthy as possible Christmas, I for one want to forget about cancer for a little while!!
Changed my avitar, look at all that hair, nice to know I'll hang on to it for a while!0 -
Carolben, yep it is odd. I was already equipped for hfs before beginning the tx, but voila! Hit my face instead! Glad to be trying an unusual low dosage to see if it's still working (hope it does).. rashes already improved Great hair, enjoy it!
Marymoir, sad that X failed you.. hope the next combo works, don't give up hope until it gives up on you.. each second counts, as long as we are happy & comfortable with our loved ones dear. In my thoughts & prayers..
hugs,
Ebru0 -
Karen, Taking a stab about Xeloda dosing and sharing what I know. I've had this conversation with my onc (same as yours right?) and we discussed multiple forms of Xeloda regimes. The standard is two weeks on and one week off, This sequence has the most clinical trial data to support it. However, there are many options beyond that including continuous dosing - thats when a lower level of the drug is given without any breaks (I think these is way the Japanese oncology community are going but don't quote me). The week on and week off schedule is being explored in a few important centers in the States and there is preliminary data but its early. There is also scheduling thats being explored in other cancers that suggests its okay to be flexible - the point is to use a schedule that is effective but that doesn't cause you to discontinue the drug because of adverse effects. And a little adverse effect (but not enough to disable you and cause to much compromise to quality of life) seems to be how they decide until they get a feel for how the drug is working from scans.
So oncologists have a range of dosing options and will generally start with the one that has the best evidence - two weeks on and one week off. They will use others if there are additional risk factors (liver, kidney, heart etc..) or if side effects are too severe. The exact dosage is determined by your body surface area so its not really possible to compare dosages by just saying how much you take. A tall heavier woman may need to take twice what a smaller finer framed woman would. If there is no break in the chemo (continuous dosing) your daily dose would be less. The dosage that can be compared is the one thats followed by ....mg/m2
That number is multiplied by your body surface area (a weight/height calculation) to get your daily dose.
One week on and one week off tend to be higher doses - I would guess if one did the math over the course of a month the totals would work pretty close across all schedules. Typically Doctors start with the highest dose and work backwards until your symptoms are only Grade 1 or 2.
Xeloda is a widely used drug now, and because it easy to take - pills - its used more flexibly than many of our other cancer drugs.
I guess the question I'd ask the Oncologist is what their thinking is about this dose. There is probably a very good reason.
Message me if I can help more - I'm worried that you would feel you've been left in the dark here. You deserve to understand what's been recommended.
Sophie0 -
Bless you, Marymoir, I'm sure I'm not alone in saying you will be in my thoughts and prayers. I, too, have liver mets. Afinitor/Aromasin helped me for quite a while.
Seeing you whole, healed and at peace,
Calico0 -
Marymoir, You are a strong hormonal candidate so the choice of the combo is a good card to be playing right now. Use of low dose estrogen might be another. Regardless we just don't know how each of our individual stories will be in the future. We have to wait to see how things will unfold, celebrating the day and moment (as wise Ebru says above), hopeful for the possibilities that are still there and aware that at some point our bodies and medical science will let us down. The only difference between us and those without a life threatening disease is that we know these things deep in our bones and in our hearts.
So there is always room for hope, and always a need for courage, and maybe trust too that we will be safe regardless.
There are a very many pages yet to be written on your story Marymoir. Keep writing on them, don't let this news stop you!
Hugs,
Sophie0
