All about Xeloda
Comments
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Bliss- I was hospitalized before I started the Xeloda and my GFR went from 60-->51. Because Of that, they started my dose at 75% of “normal” dose.(2500). My GFR returned to >60. I had my dose lowered to 2000 due to foot burning and painful walking. Happened on day 5 of 3 rd cycle. Lowered to 2000 and foot pain gone now.
I also use aquaphor
GFR once went down a few years agothey thought due to Zometa. They lowered the dose of that the next cycle and it normalized and I went back to regular dose.
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I had to take an extra week off Xeloda due to surgery for a broken bone. Return to chemo today. The CA 27 was16.4 and now 53.6
It's been a good indicator of treatment working. I just don't know if the surgery could cause the rise or from being off treatment.
I know it's a long shot - could the surgery with pins etc. could have elevated the numbers.
My MO is pretty hands off except appointments or following up on tests results even when out of wack. I have 3 more treatments before my next scan
I wonder if I should wait to see if that helps lower it. Ask they run them each week instead of monthly
Maybe ask to run the tests again instead of waiting 4 weeks. Does it warrant asking to move up sca?
I just worry about catching any progression or treatment.
Say anything to onco or not?
Any advice or info appreciated!
X
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Leee, l cannot help with with numbers but you are asking for advice here, so you you are obviously anxious. l think you should be asking your MO for a telemed appointment asap, so you can get some answers/ tests to address your concerns. Stress is bad for everyone, even if you have to wait until next week for an appointment ,you have done your best and can try and give yourself a rest from the 'what ifs' [ easier said than done, l know!] l hope you get resolution soon.
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I agree with Denny, Leee. Good luck and let us know.
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Thanks everyone who chimed in about my GFR concerns. Divine, all my other lab numbers were good, creatinine was higher, but within normal range, so MO said she wasn't worried right now, but we'll re-evaluate at next labs in 2 wks.
My feet were tender yesterday, but really inflamed last night. I've been slathering on the Udderly Smooth cream and they seem to be calming down, but sounds like I may need some Aquaphor, too. If my feet don't continue to calm down by tomorrow, I think I'll call the MO.
Hugs to all.
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Hi Bliss. My MO recommended using a cream with urea in it and it has worked fine for me so far. They get a little warm at times but nothing worse. I use PurSource 40% urea foot cream every night when I go to bed and after a shower. I also have Aquaphor if I need it.
Leee, I don't know either but I agree with Denny too.
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Urea 40% made my feet so much worse. Aquaphor for me!
For the first time in 18 1/2 years I was denied my every 3-4 month CT scan. Hopefully I can get one if I wait for 2 more months?? Although I have been NED for over 2 1/2 years, I don't doubt that my CA will recur.
I also asked the head nurse about my constant rib breaking. She thinks it might be because I have been on chemo for so long. I am afraid to do anything anymore since my ribs break when I just get dressed. I refuse to go naked!
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I'm using 20% urea cream. My feet tonight are so inflamed after walking a bit today. Hopefully, they'll calm down overnight. May need a dose reduction.
Denny123, are you on a bone strengthener? Sorry I don't remember, but didn't see it in your signature. There must be some error in procedure, otherwise, why on earth would they deny you a CT? Hope it gets straightened out for you.
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Bliss, before you consider dose reduction, you may want to discontinue the Udder cream to see if that helps. My foot burning and tenderness cleared up in two days when I switched from that to Aquaphor and even Vaseline rubbed on your feet and wearing footies could provide relief.
Oddly, I find the Udder Cream with urea works better on my hands. When I use Aquaphor on them, my skin almost immediately starts to peel in layers like its puff pastry. The UC, while not perfect, soaks in and doesn’t have that drastic of an effect.
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Bliss-I have been on bisphosphonates for 21 years and am currently on Prolia. I asked about going on Zometa or Xgeva. One of them is the same as Prolia, and my onc. doesn't recommend my doing that.
I will see my onc on Sept 2 and will ask about all of this stuff.
And I agree to quit the Urea. It made my feet so much worse.
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Thanks Divine and Denny about the urea cream, but I called MO before seeing your posts. She told me to stop Xeloda for the remaining 5 days of this cycle starting today and she'll reduce me to 3000mg starting next cycle. My feet are better tonight rand my hands haven't been affected. I don't have Aquaphor yet but thought I'd try Bag Balm tknight that I do have.
Denny123, Prolia is the osteoporosis version of Xgeva and that's what I'm on every 3 mos., but I have bone mets and don't see that you do. That's just awful how easily your bones break. I sure hope they figure out what can be done for you.
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Interestingly, none of the creams and potions ever did much for me. I find that when my hands start getting painful, I put on, and often sleep in, the purple (they don't have to be purple but mine are) nitrile gloves from Costco. I guess they're food-service gloves? In any case, they trap the moisture in my hands, and my hands look and feel better after I wear them. I just use them as needed; sometimes often/every night and sometimes sporadically. The same is true of the aqua-colored gel socks: I use them as needed and not when my feet are sort of "okay". I do get manicures and pedicures, and those help, too, though right now I'm still in recovery mode from the blasted paronychia.
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Hi. I am finishing cycle 5 of Xeloda (capecitabine) 7/7. Each cycle is a 4 week period.
I started out at 3300 mg/day 14/7. But HF, "D" drove the decision to dose reduce from 3300 to 2800 to 2300 to 2000. I am slowly working the dose back up to get to a best tolerable dose. So from 2000 mg/day to 2150, now 2300. Feet looking good, labs stable, TM reduced, scans in Sept.
This is what my MO told me and everyone should have this discussion with their own MO:
When you start to have symptoms, like HF, diarrhea, call your MO. My MO even said to hold dose and call. My MO was monitoring me for efficacy of drug, but wanted to avoid greater than Grade 1 side effects. By staying on a higher and intolerable dose, you might have to be off Xeloda longer than necessary to heal. I did not call, continued the med and paid for it. My feet got so bad, I had to use wheelchair. I learned a lesson. I so wanted to kill cancer quickly and didn"t listen to MO.
My feet have settled down. I use Aquaphor at night (with comfy socks) and switch between Udderly Smooth 20% urea cream and O'Keefe's Healthy feet during the day. Drink fluids.
Cheers. S
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my latest scan on aug 5th showed shrinkage and my tm’s are down from 880 to 350 so I decided to suck it up and not drop my dosage.
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Bliss-I knew that one of the 2 bone meds were like Prolia, thanks.
My CT scan has been denied, but my last one didn't show any bone mets.
If my side every stops hurting, I need to try to strengthen my intercostal muscles that wrap around my ribs. The pain starts there.
Joyner-food service gloves are a lot cheaper-they are the clear plastic ones like people used back in the day when they would give out food samples at Sams and Walmart. Go to eBay and search for "Clear food service gloves". They are $5 for 100 of them with free shipping. I buy a box of 500 at a time. I also use them when cutting veggies, etc or handling food for dinner.
They are also bigger, and my hands don't sweat in them like they do with the vinyl gloves.
MLS1-YAY for the good news!
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Mls1, that is good news. Woot woot!!
The bag balm with socks seems to be healing my feet. Definitely staying off them again today as much as possible.
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Joyner, I have been afraid to get a pedicure thinking the extra scrubbing wouldn't be wise. Is it better? My HF is minimal--just occasional heat but I am diligent about moisturizer.
Mls, yay! So happy for you and the good news.
Bliss, I have just been reduced to 3000 and so far so good, but I never had above stage I HF and only minor diarrhea. I also am not on my feet a lot. I probably should walk more...
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I have always been told not to use polish since the nails need oxygen. My toenails are such a mess, that I just keep them covered.
If I mess with my toenails too much, they get red, swollen and sore.
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IntoLight, I'd say maybe I had Stage1 H/F last cycle that the urea cream took care of pretty quickly, but this 2nd cycle was much worse, so I'd say Stage2. I did more walking the two days prior to them really inflaming and more than previous cycle, but I want to be able to walk. I've only had minor diarrhea as well. Hopefully, 3000mg will still get the job done. Guess I'll find out with the Sept. PET scan. Hope this dosage continues to treat you well.
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Bliss, Are you also on Tukysa? I started Xeloda two weeks ago (3 pills in a.m. and p.m.). They are trying to find my tolerable dose for Xeloda before adding in the Tukysa. Have you experienced any side effects from the Tukysa? I heard the big D can be a problem. I alto take Herceptin every 3 weeks.
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Mls 1, congratulations on your positive results, long may they continue.
I have just come back from an onc. appointment after my first cycle of xeloda . I started on 1600 each day, this will go up to 3000 next cycle. The side effects have been minimal, random , very occasional sickness, Dr. thinks xeloda is aggravating the site where l had some palliative radiotherapy just before starting X, and the sole of my right foot became hot by the end of the second week. No diarrhoea, as I had been warned many times, in fact slightly the opposite [ thanks denny123 for telling me about this].
I am hoping that my body can tolerate the higher dose. As the Dr. said ''You can get some of your life back and have less medical appointments!!''
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PetVet, yes, I am also taking Tukysa with Herceptin every 3 wks. So far, I have experienced only minor diarrhea with Tukysa that Imodium worked on well. Mostly depends on what I've eaten I think. It's quite the opposite for me with Xeloda, but I'm currently on a break from it. I started on 4,000mg/day, 4 pills in AM and pm, 14/7, but had a bad HF reaction in 2nd cycle, so MO will also reduce me to 3,000mg/day when I start my 3rd cycle Aug. 27. Hope that dosage will treat us both well.
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denny10, hope you tolerate the greater dosage of 3,000mg, too! The HF reaction I had was only on my feet, but it has cleared up now. That was 2nd cycle of 4,000 daily.
Thanks denny123 and Divine for the advice that I stop the urea cream. I didn't have Aquaphor, but my DH has a large can of Bag Balm that I used and it worked nicely to heal my feet within a couple days.
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Bliss-Aquaphor is even better. Hope that you can get some.
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l live in the UK so had some trouble getting Aquaphor, but l have found it's made by Eucerin and they make a product called Eucerin Aquaphor here which l have now ordered, in case l need it.
Bliss58 l hope the 3000 suits us both, good luck with your next cycle.
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Into Light-
Thanks for checking. Yes, the paronychia is better, but I'm losing several nails.
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my finger prints have disappeared, I have to remember all my passwords to log into websites because my tablet no longer recognizes my thumbprint
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Mine have been gone for a long time! I told my husband that this has happened at the wrong time in my life, at age 74, as I would have been a shoe-in for a life of crime! Oh, well....
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Me too! I could rob a bank now, but my feet hurt too much to make a fast getaway!
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Wow, I never thought about fingerprints, but mine seem to have lessened from what I can tell. Why is does this happen? Is it Xeloda?
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