All about Xeloda
Comments
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Good news Scwilly, that's what we want to hear. Hoping Madame X works for a long time for you.
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Great news Scwilly
!!! I am so happy for you.I have started 2nd round today so here is for long run with madame x for everyone.
Love, karina x
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Wonderful news Sarah! I started the same time you did. Had to do a dose reduction and won't have scans until January. I praying to have good news too!
Yay yay yay!
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Wooo Sarah!
I was in for blood work and see the MD yesterday. Don't have the tumor markers back yet.
If I can offer a piece of advice -- don't get on an airplane day 13 or 14 of the cycle. Ugh, blisters. So I'm taking an extra week off to avoid doing that twice in December. I asked MO whether it should be three extra days now and four later or all seven whenever.
Got the shrug, 'whatever you want'. Who's in charge here anyway, LOL? Does anyone have experience with adjusting the cycles?
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Pjam, I adjust mine all the time! Onc is ok with that.
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Sarah, glad to hear that X gave you improved scans! Dianarose, I love it that you are making ornaments. I think doing creative things is so good for us. Pajim, it's interesting that your diarrhea episodes happen on day 14. I now see my pattern is a day of gastro issues in the middle of each week off. That seems strange. I suppose the "damage" accumulates during the weeks on and then gets me. Fortunately it is manageable. I think I need to be more careful with diet my week off. Of course, I ask myself if this timing is because of cancer revving up off the drug, but I take comfort in the TM drop. I plan to take a few days or a week off for an important dance performance and for a vacation (if I get to go). My onc was ok with that when I was on Ibrance and I expect she'll say the same now. I expect a dose reduction at some point. A friend noticed my hands looked red. My fingertips are starting to peel...
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Sarah - great news! For me the Xeloda diminished all the cancer lymph node masses to NEAD on PET CT. Liver lesions grew like crazy though. Mixed response. I am so glad you are moving toward NEAD.
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Re H/F syndrome.
We all know that we can't get rid of it. We can only try to ease the pain it causes. The dry, cracking, splitting, peeling and itching. I have found that putting something a bit oily/greasy on my feet then putting a plastic Wal Mart bag over my feet, sock over that, gives me tremendous relief. You can do the same with your hands and uses rubber gloves like what you find in the doctors office. I leave it on most of the day, as my socks would just absorb whatever I put on my feet. Might not work so well if you have to do a lot of walking. Maybe do it at night. I find that hard, doing it at night, as I don't like clothes of any kind while I sleep. But I have done it. Your skin can't breathe when you do this, hence only doing it for periods at a time. But let me tell you, what a relief!!!
I use, not all at the same time, organic coconut oil, Vicks, Vaseline and Clobetasol.
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That's interesting, Goldie. I'm glad you have found some ointments that help you. Good old coconut oil, eh? The rubber glove thing I wonder about, because as I understand it, hot and sweaty is something to avoid. According to the nursing article I read, one reason hfs affects the palms of the hands and soles of the feet is that there are many sweat glands there, and the drug comes out in the sweat and damages the skin. The article cited wearing rubber gloves while washing dishes in hot water as an example of the sort of thing to avoid. Every night, the last thing I do is wash my feet in cold water. Then I get into bed and slather on the lotion and hang my feet off the edge of the bed for a while. Then I just pull my feet in and if the sheets get some lotion on them, so be it.
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Shetland, correct about the palms and soles, sweating and such. I wash my dishes and use very hot water, .as I want them clean, but I do wear gloves when washing. My hands and feet don't sweat....EVER! And not even when I have the bags on or gloves. When I do the bags on my feet, it feels so good when I am walking, no hurt at all. Otherwise I was walking like I was walking on egg shells, trying to avoid friction and it hurt. I don't wear the gloves much, just keep lotion or something on them. I also avoid washing my hands a lot and NEVER use disinfecting rubs, as they are mostly alcohol.
And yes, so much for letting "stuff" on the sheets. Give it a try....what have you got to lose, right?
If you DO try it, let us know what you think.
On a funny note, my biggest sweating is from the hot flashes I get! Why isn't the top of my head and other areas that sweat from these "personal summers" affected???? Glad they aren't!
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My nurse told me about these cooling socks for HF which I got on Amazon. They have a gel insert that you can cool and then slide your feet into the sock. It feels so good and cools my burning feet quickly.
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Lindalou, those look great! When my feet are burning (not so often -- I get painful blisters) I spend a lot of time with my feet on the kitchen's tile floor. I'd rather have them off the floor.
My fingertips have started to wrinkle -- like from the bathtub or pool. They also dent easily. Onc says it's subclinical HFS. How nice.
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Pajim my fingertips get very dry and then sore for a few days. I'm on day 3 and already they are getting dry so I guess in a few days they will be sore again. This drug is weird how it does things symetrically. There's one sore spot on the feet in the same exact spot on each foot. I had two red spots on my face right under each eye.
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Goldie, one time my dad walked by and rubbed my head when I was having a hot flash and he said "holy mackeral! Do you feel ok?!" haha
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HLB, OMG, my head gets so hot! And I turn beet red, face and chest. Had a friend ask me one time "are you ok?". I said yeah, why? She said you just all of a sudden turned beet red. I sure hate these things, been dealing with them for 9 years. But I guess I will take it, better than the "alternative" I guess. Same with all the other SE's.
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I have had them since 2005 after my first chemo treatment. They seem to have finally eased up a bit but as soon as the weather gets warm or humid they start up again. I have been on effexor for them ever since then. I just could not tolerate theb severity and the frequency of them without it! I often wonder what ladies did in the old days, especialy in the south when they wore those big heavy dresses!
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Results of my wife's PET/CT scan. Met's to spine further reduced yet larger met to hip bone shows no change. Funny how Xeloda might work in one area yet not so well somewhere else. All in all wife and I are pleased with results.
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Hey Mike, "pleased" is a good thing. Now a "CURE" would be the utmost of blessings. But as of yet, we don't have that. So no change or little e changes (to the better)....we'll take!
My TM's only dropped a little on my last labs, but I'll take that over them going up a little!
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What a strange side effect hfs is and strange how different it can be. For example, friction on her feet bothers goldie the most, while pajim gets blisters. Those socks look great, Lindalou. My feet burn when I have to slog through the mall with my kid during week two. I've made a note to self that shopping is not fun and to drop the kid off next time. My fingertips are starting to peel more and get that hard, dented feeling that the edges of my heels have. I decided I had better cut back on alcohol hand sanitizer when possible. Trying to avoid colds and flus but don't need to injure my hands. Oh yeah, my cuticles are weird, hard and a bit too far down my nails. Anyone else?
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Same here, SP. My hands feel like the skin on my fingers especially is hardening and shrinking, and my cuticles are so tough and hard, especially on my toe nails. Also, I am just finishing my week off (cycle #10, I think), and my hands are more painful than they were on day #14. It's literally difficult to make a fist.
I had mentioned in the FB Xeloda group that my hubby happened to have an appt. w/a really good foot doc for some serious pain that turned out to be a bone spur. So while he was there, he asked if the guy knew anything about HFS, and he said he treats a lot of chemo-induced foot issues and gave me hubby these tips. (1) Wear loose fitting shoes with gel insoles or added gel inserts and wear soft socks; (2) A cream with a high amount of aloe vera works well for some patients at the burning stage. (As an aside, I tried adding some aloe vera gel to my slathering routine one night. It didn't seem to help, but we're all different, and one night probably wasn't a fair evaluation.) (3) Don't hesitate to see a foot doc if you aren't getting sufficient help from your onc. They should know about HFS.
I read but don't post much these days so may not have shared that my most recent CA27-29 dropped from 264 in mid-September to 172 last week! I was literally in shock when I saw that, especially since my TMs when I started Xeloda last March were just under 800, and also because I had done a one week on/one week off cycle in there to better enjoy a little trip. My CEA has taken a similar dive. I have scans the first week of December, and I'm wrestling with whether or not I should try a lower dose, as recommended by both my oncs. Deanna
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yesterday, i made the mistake of trying to peel of some of that really hard dented skin on my heels. It seemed as though the skin underneath wasn't too raw. Today they are raw and burn and I don't even want to be onmy feet at all. Note to self..don't do that again.
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Ouch, Stefanie. I hope your heels heal fast. Deanna, that is great that your TMs continue to drop! I may have the same decision to make soon, whether to lower the dose, as I can see the hfs slowly becoming more apparent. But your hands are hurting, so the decision for you is more pressing. What do you think of trying a lower dose for a cycle or two and seeing what the TMs do?
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Hi All,
How long was it before you started to really notice the HFS? I’m only on day two of my second round and, at this point, am praying that I respond (mets in my belly have me very worried) but am trying to get a sense of what lies ahead. It’s amazing what we all have to deal with. At some point it gets hard to know which treatment is causing which side effect!
Pat
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SS, I am on day day 7 of the second cycle and no hfs yet. I do feel some slight tenderness in my palms and soles but no peeling or cracks, etc. I pray xeloda works as my mets are widely spread, but wondering if hfs is a sign of its working or not.
Ladies with sore hands and feet, hope you all find some way to keep the hfs at bay.
love, karina
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Shetland, I have not had any blisters, mostly peeling and cracking. A strange drug indeed, but at least it works. As for cuticle, mine are weird too. Dry and sharp if you rub against them. Hands and feet feel like alligator skin, so rough and dry. I also have nails that have lifted. Fingernails are thin and very brittle.
DLB, when I was on 14/7 schedule, I found that my best week was the first week on. The week break was no picnic as you body is still processing the Xeloda. Nice drop in your markers, may they continue to go down. What dose are you on?
Stef, I have done that too. Def. hurts!
SS, I have been on X for so long, I don't remember when the HFS started, sorry.
Karina, I don't think there is a way to keep HFS away.
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Karina, your question about HFS being a sign Xeloda is working -- if there's an association between HFS and the drug's efficacy -- was recently asked on the Xeloda FB page. There has been some research suggesting a possible association; however, it doesn't seem to be across the board amongst X users. As with everything else about mbc, there are so many variations in our disease, our lifestyles, and our responses to meds. But that FB discussion prompted me to email my UCLA onc, who responded something like, "... there is no known association." I'd like to believe that, but I am still concerned about reducing my dose.
Goldie, I'm on 1000 + 1000. Both my oncs (UCLA and local) seem to think I'd be fine at 1000 + 500. My local onc even said he's had people successfully on as little as 500/day, although I didn't press him for details. I start my new cycle today, and I'm toying with doing 1000 + 1000 for 7 days, then lowering to 1000 + 500 the second week or last few days of that week, when my HFS has been at its worse. And Shetland, regarding your question... if we dose reduce and TMs start to climb, doesn't that mean our mbc has figured out how to circumvent the Xeloda, in which case going back to a higher dose wouldn't necessarily work? I don't know; I'm just asking. Deanna
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Deanna, thank you for the information. I am on 2000+2000 a day and will be happy to stay on the same dose, if SE as as mild as now .
love, karina
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Pat, my hands and feet were glorious into the third cycle, then it started..and it’s cumulative, so it only gets worse. Best tip I can give..dont assume you are ok because you don’t have it yet...and then go walking barefoot on rough surfaces or, in my case, too much time on the beach. Those things set it off. And moisturize the heck out of them even if seems you don’t need to yet.
Goldie, my HSF is exactly like yours.
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Hi ladies ! I am waiting for my xeloda to arrive and I have question. How are you red blood cells doing ? My six months on ibrance did not stop my cancer. And even with a one month break from Ibrance I have had two units of blood transfused because I am so anemic. Anyone have anemia improve on xeloda ?
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Hi JVF,
I’m glad to know I’m not the only one. I also had trouble with my red blood cells on Ibrance. I had to stop partway through round four. My red blood cells steadily declined starting with round one to the point that I was just about to the point where a blood transfusion would have been in order. I have been off Ibrance since mid August and my hemoglobin finally reached the bottom of normal last Thursday.
My blood was great after a round of Xeloda. Neutrophils well above the cutoff for my next round as well. Hopefully it will be kind to your blood as well.
Here’s hoping you and I do well on Madame X. It’ Hard not to feel like Mr. Cancer has the upper hand here. Madame X needs to put him in his place!
Pat
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