All about Xeloda
Comments
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ditto on the depression which came first chicken or egg? i really belive my hip pain is from the taxol didn't have it again till today. start my third round tommrow ct and mri next week. hot hot hot today so stay cool ladies and blessings
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luvRVing - thanks for the info. I seem to be having some of the less common side effects. Oh, well, I just need to figure out how to deal with them. The depression I felt was definitely due to the Xeloda, but maybe it won't happen again.
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Back from onc. Blood tests had the usual red flags, just a bit low here and there. She was not concerned. Scans are in a month.
I showed her my hands which are definitely taking a beating, slathered or not. So we are going to drop back one pill each dose. So I'll be 1500mg a.m and p.m. I've managed to maintain the 25lbs I lost over the last 6 months. Phew! Love to lose more. Not so hard when the appetite flattens out but I tend to enjoy my week off when the taste buds wake up.
She had no input on B6 but offered to check into it.0 -
Chickadee - glad to hear your onc visit went well. I hope lessening your dose helps a lot. You deserve some relief.
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Was talking to my breast nurse today about a few bits and pieces.
I asked about the Vitamin B for hand/foot and while she said there is no evidence to support it, it wouldn't do any harm. So just wondering if anyone is taking it and if so, how much?
I also told her I had developed some foot problems with a couple of blisters (healing now on my week off) and generally red and sore feet. She asked me what day they had developed on and I said around day 11. She said that the most important thing is that if it is working, I can continue to have it so that if it happens again around the same time, I should just stop taking it and have more time off because I would have had a good dose by then. Gulp - no chemo for extra days but she's really experienced and the onc says the same so guess it's ok to do!
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Maybe they would consider going to the 7/7 schedule.
I'm a little nervous with the dosage reduction but I also let myself worry that if I didn't take it for 14 days, would it work as well. So far one scan good. Next scan in a month and then I'll know for sure that 7/7 is a winner for me.0 -
Found this study. They didn't find any benefit regarding b6 and HFS. Phooey.
http://jco.ascopubs.org/content/28/24/3824.full0 -
OH, that's too bad, chicadee. I was hoping it would work for those of you having problems. I'm not having any yet, but I'm only on my last day of the 2nd round. I'm sure there's more se's to come. I am really hoping it just stays like this as I seem to be having an easy time of it.
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The study mentioned the HFS tended to show up after the 3rd round. It took several more before it started for me. It's not awful. I picked up something from Home Depot called o'Keefes Working Hands. It seems pretty nice so far. Not greasy. Expensive though. 6.98 for a 3.4oz tub. However it doesn't take much to smooth things out, so hoping it lasts awhile.
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Had my MO appointment this morning. My labs look pretty good. Yay!
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I read a German study on Xeloda and HFS in colon cancer patients, saying that in people who developed HFS the Xeloda was effective. Probably the same for breast cancer patients, I would imagine.
Chickadee: I also have been paying 6.99 for O'Keefes until my husband found it at a Farmer's Coop for 4.99. Maybe you have a Coop in your area.
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Say if its effective I'll take red palms and itchy finger tips anyway! And don't ya know, now I find there are studies saying B6 does help with the symptoms. Sigh.
No co-op but a couple feed stores. Have to check them out. Thanks for the tip.0 -
Chickadee- I think I will still try the B6 if there's evidence of harm and some studies that do show benefit. I still have HFS on Day 6 of my "off" week. Developed a blister on the tip of one of my toes. I wonder if I'm going to need my dosage reduced. Kind of scary. I'll have one more week on before I see my onc so I'll have a good idea by then what my side effects are.
I will see if I can find the Working Hands lotion, but I wonder if I'm just wearing the wrong shoes. Should I be wearing shoes without toes? I like slip ons like clogs, but maybe I'm getting too much friction. I don't leave the house a lot, but my feet don't like to walk barefoot on the carpet and tile and socks irritate them after awhile, too. I can't just sit around with my feet up all the time.
luvRVing -glad your labs were good. Yeah!!!
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Cynthia
I blame the shoes I was wearing for both the blisters. First time my old Birkenstocks without socks (friction under toes) and the second time my usually comfy slip on mules where I think my feet just moved around too much.
I bought a couple of pair of those gel insoles and keep a pair in the freezer so when my feet get hot, it cools ten down for a while. I actually put one on my head yesterday during a migraine so they have many uses!0 -
Laurie - thanks so much for the info. I will try the insoles and I like the idea of having cold ones on hand, too. I like to wear mules, also, and I thought they were comfy enough to be safe for my feet. I didn't consider the friction part.
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thank you for the info LuvRVing! I'm still on my baby dose - two pills in the morning and at night. Still nauseous and sick, but sticking it out. Must be doing some good - had a good mri result last week
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1st day of week off of 2nd round and my finger tips are sore and feet feel tender. Looks like I might be having my week off just in time. :-)
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At Sloan now - my doc scheduled scans for 7/17. She says she can still feel the lump when I lay down but my boob really does feel softer. I guess her plan had been to start me off on a low dose to see how my side effects were and then to raise it but she doesn't want to do that if I'm responding to this dose and am doing well side effects wise. She said "Normally I spread the scans out".
I don't know if this is a good sign or a bad one. I mean, how quickly are you supposed to see a response to Xeloda/herceptin? I have no side effects at all (I actually feel more energetic now) and my boob really does feel softer. I didn't realize how much of a difference there was between the two till now. But I'more afraid of them finding this is all too good to be true. All those scans in April which diagnosed this were terrible.
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Doormouse, I notice a difference within the first 5 days. My onc started me on the maximum dose. If you are responding to the lower dose then I would be happy with that if it were me. Expecially if it meant no se's. I'm pretty lucky in that I am not having any se's worth worrying about. The se's seem to be scattered and come and go from day to day. I hade a golf ball size lump in my breast that was gone after the first round. I still have 2 more to go but things are definately softening. I hope you have a long and worthwhile run on the X.
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I worried mysel quite a bit for that first scan after starting Xeloda. You just don't know. But I got the first good news on my liver in a year. "smaller in size and fewer in number". Wow that felt so good. At first my SEs were stomach upset and lots of reflux. That was on the 14/7 regimen. I only did that two rounds before I used everyones advice on here and asked for 7/7. Life is easier. The HFS has reared it's ugly head but we're going for a lower dose and I'll see how it wanes next week on the off week.
For some reasons my Ryka sneakers have been comfortable enough to get around. They compress the foot swelling a bit too. Otherwise it's comfy bedroom slippers.
Dormouse, my scans are the same week as yours. We can freak out together0 -
Just wondering if every one is getting a scan every 3 months on xeloda? I'm in my 2nd cycle, day 11. My feet are not super red but sure are starting to burn. Doing pretty much everything recommended here. Sure hope it works after all this. Wishing all of you good results.
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My onc said she is starting with monthly blood tests and scans every 2 months. She said if the second one continues to show improvement we'll discuss longer intervals like 4 months. That would be nice.
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My scan schedule is the same as always (bone scan every 6 months). My CEA is reliable so that's how my onc will know if this is working and I have that checked monthly before I get my Aredia.
I'm pretty sure it is working because before I started it I could barely walk, and now I feel much better and the improvement lasts longer each cycle. So, I start my 3rd round tomorrow and I'm just noticing some stiffness and discomfort with walking, but it took walking around a store to do that.
I bought myself some gel insoles for my shoes, and some soft/comfy opened toed slippers. I also got some Airplus Aloe Infused socks and slipper socks. They feel so awesome on my feet, so I hope they help. I'm going to put my feet up now.
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Swannay: Yes to PET/CT every three months on Xeloda. My first scan showed NED. Have pretty bad HFS and had to drastically cut dosage.
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Cynthia, how about a CT Scan to ensure there is no progression to soft tissue? Regular blood tests? I'd be nervous with only a bone scan and tumor markers. But that's just me.
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Cynthia, I get CA15-3 to check for tumor markers. They are pretty accurate for me. Why do so some get CEA and some CA15-3? I'm trying different socks also. Seems i'm buying something new every few days.
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Chickadee - My regular blood work also includes a CBC and metabolic panel. My onc also gives me a quick physical each time to check for signs of liver involvement and we discuss any new pains I may be having. If my CEA goes up on a particular tx, he does a bone scan to see where the progression is. I imagine that if there isn't new progression in the bones or I have new pain that doesn't seem bone pain, then he will order the appropriate tests.
Swannay - For many years, I got both the CEA and the CA-15 tests, but in the last year or so, my onc dropped the CA-15. I'm not sure why, but they were both reliable for me so it was probably redundant to do both.
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I would only add that my liver mets were only discovered by CT. There were no symptoms. My blood tests had no red flags at the time either.
Wishing the best for you.0 -
My onc does the CA 27.29 test - it's the one that has been reliable for me. My next one will be on 7/11. Like Cynthia, my "checkup" is the CBC and CMP labwork along with a quick exam, "are you in any pain?" and "how are you doing?" conversation.
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well my MRI got postponed till the 9th still having cat scan today feeling a little down today. anxiety boredom ect.or maybe the x, plus my hip pain is back . hope all u women are having as easy time as possible. Chickadee maybe we could have lunch somtime?
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