All about Xeloda
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JFL that sure sounds wonderful
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JFL. Great news so happy for you!
Babs
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woo hoo JFL
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Thanks for your responses. As others here have said, good results makes the painful, heinous-looking hands well worth it! I used to be able to hide the peeling at work by keeping my palms down but now it is creeping to the tips of my fingers and is not hideable. It looks like athletes foot!
Lita, good luck tomorrow on your scan!
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My wife is getting pretty good results on her hand foot syndrome from the Differin. Her feet still hurt, but there isnt any peeling or cracking. I should note that her feet completely lack callus now.
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Timothy what's Differin and did your wife's doctor prescribed it?
I started Xeloda two weeks ago and my left foot sole is on fire, I've been using the cream that came with the Xeloda (Udderly) but it only calms it down for a few minutes, any other suggestions?
Aurora
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She got the Differin from her General Practitioner. Its a prescribed cream. Sort of a retinol / retinoid drug. Unknown how it works for hand foot syndrome, and it isn't even proven that it does work. But, she thinks it does. She also is using salicylic acid, a liquid her dermatologist recommended. She uses the salicylic acid during the day, and the much more expensive differin on her soles before crawling into bed. Her skin is ok, but she continues to get burning from time to time, and she says walking, or in the shower, it feels like walking on burning sand. She can however ride a bike for exercise.
Some obscure medical case report showed that Differin lowered the grade of HFS by a couple of grades, so that's why she is using it.
https://www.ncbi.nlm.nih.gov/pubmed/24396465
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Timothy that is so informative, thanks so much. So glad for your wife.
Timothy how long do you think it could take for Xeloda to start having an effect seen on scans? Because of so many things going with on with Dani, Onco is ready to do Pet/Ct after the end of 2nd cycle. I hope it's enough. Of course, I always like scans, but just hope it's not too early. Because this tx was given in the middle of her taking two other treatments, it really will come out to 12 weeks post last scan. ( for her this is a long time)
Aurora, I thought about you right away. Seems like good recommendations.
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I can't recall exactly, but I thought I read that it takes at least 8 weeks on average to start to see something indicating its working. A scan might only show what suggests stabilization initially, as its hard to image the death of a tumor. My wife at 6 weeks only saw a 10% drop in tumor markers. The Onc said that was around the minimum to confirm that its working. However, at 10 weeks out, things started to move more rapidly, and she was an average of 30% drop in tumor markers each 4-5 week treatment cycle.
Here we are, around 6 plus months since the onset of treatment, tumor markers have dropped 90% (initial 449 ca-15 gone down to 37!) from initial values, and yet a recent scan shows only minor imaging changes to her 5 small liver tumors. I am guessing here, but I think something will persist in the imaging even if the tumor is 90% killed off. Perhaps a larger tumor would show more size change? A small tumor might be mostly replaced by scar tissue and persist in the MRI image. They have only done MRI's since treatment began. The plan is to do an MRI every 3 months.
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So that's another problem I come up with. She always has Pet/Ct due to very extensive bone mets, then 5 mos ago, 2 small lesions showed up, by the time a Pet/CT was done to reevaluate all 4 to 6 wks later, they were innumerable. So I was always asking for US or something like that, even yesterday, because I would like to know really concentrate on the liver, but Onco says what's the point of more and more testing, because she does go through a lot, just finished Brain Rads, etc..., so i am confused myself. Onco told me they are taking care of her well, and the images from the Pet/Ct will show enough. Hmmm, I am just not sure.
And her markers, were never very accurate, even with much going on in her body it's not even extremely high. And the TM's don't always go up and down parallel to issues. Now, the Ca15.3 is going down point by point and Onco seems satisfied with this. I only am only half sure.
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Hello, anyone currently taking xeloda? I just received my prescription and have not taken it yet. If you are currently taking it how long?
Thank you,
Carla
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Finally, after three cycles, my cancer antigen levels have gone down, some 21 points. Ya now I was pleased and so was my oncol. Blood work looked pretty good too. So, no cat scans this time around. But in the meantime, I've had this nasty cough, spitting up phlem (ph), some wheezing. After two chest x rays, it was determined I have a little fluid on my left lung. So, at this time, I'm taking an antibiotic, steroids, and inhaler along with cough meds and lets not forget, Xeloda. I started my fourth cycle yesterday. My oncol. change the time to one week on of Xeloda, one week off, so I think this will help with a few side effects.
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Hello Ladies, I am new to this thread and will be starting Xeloda on Monday. I was on Ibrance & Faslodex for 8 months with great results for the first 2 scans. My scan on Monday revealed a nickel size tumor in my liver. I have also had a bone met in my right iliac bone that the Ibrance/Faslodex combo did not touch. My oncologist said I have heterogenous cancer cells, meaning they have a different genetic make up. The Ibrance/Faslodex got rid of my lung mets, but didn't work on my bone met and did not keep the new tumor from forming. This really scares me because I have not been getting longevity out of my treatments. I got 9 months out of Arimidex and then only 8 months out of Ibrance/Faslodex. Has anyone else been in this situation and then had longevity on Xeloda?
Any tips for this drug would be so helpful. One thing I am already stressing about is taking this drug with a meal. I usually only eat a bagel for breakfast because I am not very hungry. I usually eat this around 9am, so that means I have to take the second round at 9pm! Can't image eating something this late. So my big question is, Is a bagel enough food for this med? How are you ladies handling this.
Thanks for any help.
Robin
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Robin: Welcome
). You really do need to eat some protein w/Xeloda (X, as we call it). As some one said a few pages back, "Don't send a banana to do an omelette's job." Simple carbs aren't enuf. Even a little plain yogurt, cottage cheese or a simple hard boiled egg will help. It doesn't have to be a huge meal, just something that will stay in your stomach while the pills dissolve so you won't get as much irritation from the drug.There WILL be side effects, and hopefully you MO covered a few of them. The main ones are: Hand/Foot Syndrome (itching, burning, stinging, throbbing of hands and feet along with skin peeling and some neuropathy) not everyone gets this, however (use hand creams like Woodworker's cream, Eucerin in the jar, Aquaphor, etc., and wear socks and gloves to bed so it will get absorbed); diarrhea with cramping (make sure you have Imodium on hand); nausea (MO can give you meds for that); mouth sores; and fatigue. Keep in mind, these SEs will increase with each progressive cycle, but it IS manageable. X works really well for most people. After the first few cycles, you'll know what you can and can't eat while on it. Start using the creams RIGHT AWAY, don't wait. You need to try and stay ahead of the peeling.
You don't have to be anal retentive about the dosage timing. I usually space my 2nd dose about 9-10 hrs after the morning dose, so if you eat b'fast at 9 am, you could eat dinner at 6 or 7 and take the pm dose.
Naturegirl: If my scan today shows that X is working, MO will still keep me on it, but I'm definitely going to ask to be changed to 1 wk on/1 wk off, too. The toxicity load is getting bad for me in terms of gastro-intestinal issues (REALLY bad this week - lots of stabbing abdominal pain and cramping). I've had some coughing issues, too.
Timothy: Thank you so much for your post about scans and scar tissue. I'll keep that in mind on Friday when I go in for results. I've heard there's scarring with bone mets. Am I wrong there?
Hoping for continued positive results for everyone
.L
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Thank you Lita for all the suggestions!
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Hi X ladies and welcome to the New Xladies.
Mom I have been on xeloda for four months now. After two,cycles my tumor markers went from 200 to 1200. My oncologist was not surprised. He said that it usually take few more cycles to start see the results.
Later on a ct scan showed that I was stable and the TM dropped to 800.
Two weeks ago the TM continued to decrease by half and it was around 400. I will have a ct scan in early December.
I hope my experience helps you.
Take care everyone
Ziz
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ZIZ good to know. Thank you. The conundrum is that she started X in the middle of the other therapy, and it's been awhile since last scan...so if we wait let's say even for the 3rd cycle, it could be too long before we know how things are, six of one, half dozen of the other...so glad for you.
Lita, I never heard of the protein thing before. Why don't the good people at the doctor's office say those simple tips…you learned all this so fast!
Waving to all...
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I must be on a low dose of X. My feet and hands feel funny, but I haven't had any classic symptoms.
My face has has been having rash like break out? only in small areas, like where my glasses sit. And I get muscle aches.
Some days I get so tired of this crap.
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Does anyone know of any drug interactions with Xeloda and Tumeric?
Thanks,
Robin
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I take both and am not aware of any
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I take turmeric daily and have for years. No problems here.
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Both curcumin and capecitiabine (xeloda) are metabolized by the cyp2C9 liver enzymes. That's where the caution comes from. However, I've read that curcumin, while using the same enzyme, doesn't overwhelm it. But, that isn't tested in humans. Consequently, out of an abundance of caution, my wife only takes curcumin during her time off xeloda. That however may be more cautious than necessary, but who can say?
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Thanks Tim. I am one of the over cautious, so I think I will do what your wife does. Do you know anything about AHCC and Xeloda?
Robin
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I also pulse my supplements, Timothy. I take a full regimen during my weeks off, and during my dosing weeks I take a greatly reduced regimen, concentrating on mostly food-based supplements. I take larger amounts of curcumin/turmeric during my off-weeks, but I do take about 400-600 mg daily during my dosing weeks because it makes me feel better. I now take Meriva curcumin (a type of formulation, not a brand) because it takes fewer milligrams for the same impact.
I take liver cleansing supplements during my week off, but never while taking Xeloda. I skip B vitamins during dosing, also, because high levels of blood serum folate can magnify toxicity-related side effects with Xeloda. (I have MTHFR, so I take methylfolate only, never folic acid.) But I absolutely have to have B vitamins to stay well, so I make sure I take them when I can.
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Hadn't realized how long I had been away. Seems that I last logged in on my birthday and stayed away for a full month.
Just started cycle 14 on Wednesday and got my scan results today. Stable! No regression. No progression. (Some degeneration of my hips which isn't a surprise to ole' creaky AM susan.) We are staying the course!
Cycle 13 was different. All of a sudden, I feel like a sick person. I am more tired, less resilient, weaker, and my feet see no improvement on the off weeks. Together, Dr. Christine and I have decided that at the end of this 7-day cycle, I will take an additional 7-days off so that I can prepare and enjoy Thanksgiving, and give my body some recoup time.
*susan*
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Happy for you, Susan. Hope you recoup really fast. The more cycles we're on, the more X's toxicity builds up and drags us down. I've been having LOTS of gastrointestinal issues, and I'm only on Cycle #8
(Got the results of Wed's scan today. For the most part, stability - - YAY!!! I'll take that, thank you very much. I feel like I've been granted a temporary stay of execution. But they found two areas on my thoracic spine near the area that was radiated in May that are much more prominent. RO says he does not want to do further testing at this time unless my pain level increases substantially. Okay by me. I will have a PET scan in February to see what we may have to do next. I assume PET scans show what's going on in the bones much more clearly (correct me if I'm wrong).
MO and I decided to drop the Xeloda dosage again because of SEs. I will now be 1 wk on/1 wk off - HOORAY!!! That should really help my hands, ease the gastrointestinal issues, and help w/fatigue.
I am pleased. Wish there was shrinkage to my other organ tumors, the stuff on the pelvic wall, the other bones, and in the muscle tissues, but I'll take stability over progression any day of the week.
L
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Lita and Susan
So happy youre both stable!
Babs
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My wife had been taking maitake D extract (Pro 4x) at the dosage of 6mg/kg of body weight. This is the dosage that the American clinical trials determined as optimal. As for it improving neutrophils, it most definitely works. Her neutrophils after a round of xeloda plus maitake are often higher than they were before she started chemo. She also started on maitake and other mushroom extracts (six mushroom blend) before chemo, and her neutrophils were higher than ever previously recorded. So, I am convinced that at least in so far as neutrophils counts, mushrooms work.
She is going to try a 4 week cycle of ahcc instead of maitake and compare the results. We can see if her tumor markers continue to drop at the same rate, and whether her various blood counts are as good or better than on maitake D extract. I will most definitely post up the results. There are animal studies that show ahcc increases the potency of 5-FU, and since 5-FU is the final end product of xeloda, that suggests it might enhance the effectiveness of xeloda. But, there aren't full blown clinical trials on any of this stuff. Its do at your own risk.
My wife is taking theracumin brand of curcumin during her time off xeloda. It's supposed to be the most absorb-able form, and reaches higher concentrations in the blood than any other preparation of curcumin. She's on a pretty extensive list of supplements during her time off. The mushroom preparations don't have a great risk of interfering with chemo, and don't appear to have had any ill effects on her treatment. I only wish we could find something that builds platelet counts up. We've tried papaya leaf extract and got no results whatsoever. She is currently eating pineapple daily, as that has some reputation for increasing platelets.
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Timothy, I also use a mushroom supplement daily, Myco-Phyto by Econugenics. It's a powder that you brew with hot water. It tastes pretty much like dirt, but I shoot it down past my taste buds really fast. (I am under no delusion that I drink it for pleasure-- haha.) I do continue taking it during my dosing weeks. My neutrophils are always pretty good.
What is ahcc?
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I feel awful on X y mouth is full of sores despite the magic mouthwash and the soles on my feet hurt. I know this is to be expected but I don't know if I can handle I'm taking 4300 mg so I might ask on o for a reduction in dose and/or extend my off time.
Any suggestions?
Aurora
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