All about Xeloda
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A few notes now that I am off Xeloda for almost five weeks.
My new oncologist wants me off everything but aromasin until I am strong enough to go aggressive again.
My new oncologist asked what schedule I was on, every other week? and I answered that they wanted the 14 days on but I couldn't get past 10 most times. And that I played w the 4/4 dose to what I could handle and took 2 in day and 4 at night so I could function, he just smiled, didn't shake him up at all. He disagrees with the last oncologist I went to for one single horrible appt, the old said he thought xeloda had been doing nothing and he did not agree w mixed response of lymph nodes yes and liver lesions no help. The new says, "I just don't know that I can agree with that."
Punchline, xeloda kicked my butt and not the cancer. Sorry that it was not doing all it could for me (liver lesions grew to a non-treatable proportion, let's say they are just for now) but I still cling to the possibility the xeloda cleared ALL my lymph nodes that were cancerous and the radiation helped it do so. I am giving xeloda a lot of credit and am grateful for the work it did do for me. Now I move on to getting strong enough to handle something agressive again.
Next - after being off for about two weeks, a terrible cough went away for the most part along w copious phlegm, though I don't know if it was the drug or something else that changed for me..... and after four weeks, it was like I woke up. Mental energy was better from beginning of being off xeloda but the real change was when body and mind were doing so much better and I actually could walk around and EAT again. True, the Ibrance / Femara combo from Dec - March that I took before the Xeloda had started my non-eating phase but the xeloda continued the problem. Now I am eating much better and have cravings.
I hope my experience helps others.
On to the aromasin threads.
Diane
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Kacy - did you ever get your prescription cost worked out. When I was on Ibrance there wa a mix up in applying to ins (nurse did not include the Femara I would be taking which is a required part of protocol for my ins) so ins would not pay. To move it along the nurse instead went to manufacturer or Ibrance and they had a system to get the drugs in our hands with no fee. I said, but we do make too much money to get benefits like this, she said there was a 6-figure income allowance so they were so very generous almost anyone could get help. I ended up getting Ibrance for 5 months with no cost. My insurance should be ashamed of themselves for not working through the red tape with the center, but I told them that. And was gratedful for the rush and courtesy of the manufacturer. I hope you find such a program.
To those who have asked if Xeloda can make them weak - yes!!!!! it is a heavy duty drug imo. Like I said above, five weeks out from last dose and I am just now getting my strength back. Also am not breathless like I was, forgot to mention that.
Dianarose - better late than never but I am so glad your TMs are reduced, may you continue on a strong path forward.
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Hi All,
Question for those of you on Madame X long term: does the fatigue lessen? I am almost halfway through round six and all I want to do is sleep. My MO may switch me to something else depending on the results from the next scan in a couple of weeks but I'm wondering how to manage if I stay on this drug. I'm still working full time but it is becoming very challenging. Thank goodness I don't operate heavy equipment!
Pat.
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For me the fatigue and utter exhaustion and weakness just got worse. There can be a lessening of your dose and still be effective. What is your protocol through the MO? 7 days on / 7 off or 14/7? How many pills and what times of day?
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I am sleeping 15 hours a day and sitting around in my pjs the other 9. It could be due to anemia. After reading bluebirds story I am wondering if it's Xeloda.
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Sorry, I can’t remember how long you have been on Xeloda. I am hoping some of the long term (more than a year) Madame X subscribers will weigh in. I know others have mentioned the fatigue. Hoping it’s something I can overcome as it is seriously impacting my ability to function normally.
Cheers. Pat.
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sandiesservant I'm only on my second round.
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Glad to hear your stable Pajim. Happy New Year! Goldie, my CT showed good improvement all my liver mets stable and some gone on Xeloda. But my TMs have risen the last two times I had blood work. They were normal for a while but creeping up a few points at a time. Now at 57. I get blood work every two weeks so maybe they will come down. If not I think I might be in the big leisure chair. Xeloda has made my finger tips sore and peel. Hard to open anything but that’s the only SE I’ve had. Keep you all posted.
Happy New Year to Everyone
Hugs. Anita
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pat, I am wondering the same thing. I'm on cycle5 and for this one I am trying 7/7 instead of 14/7. Wondering if we eventuallygetused to it and the sleeping lessens. I sleep 13 hrs sometimes and still doze off at work. It's frustrating. Sometimes I fall asleep before I get my foot routine done.
Bluebird, since I started X i have phlem. Not a bad cough but multiple times a day clearing the throat of thick phlegm that I never had before. I hope this onc is a good one for you. Do you mean that he thinks it did not work at all?
Goldie, I know we are all different but I'm so perplexed at my tm. When I first started with mets it was found because the number was 57 after 8 years of 27 to 30. First tx worked about 2 yrs and when I switched it was maybe around 100. Now it's 800 down from 5000 but still just bones and no pain. My last scan showed more acidity but no new ones and didn't feel like a crisis or anything like that. If they went up 10 at this point I would probably Ignore it! I'm so hopeful that it has worked so long for you! I wish there was a solution for the HFS though. It looks painful for you. It's been very cold here, in the teens, and my hands especially are so so dry. A friend at work have me two bottles of WEN and my cotton candy hair is back to normal! One day before that I put coconut oil in it, not a lot, just what was left in my hands, and my hair was stringy and greasy looking all day! Ohwell, it was a treatment haha.
Hope everyone had a beautiful Christmas and great news about the scan Pat! I hope it was pat, I'm forgetting already ):
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HLB, if I recall correctly, you and I are at similar places with both of us trying to keep working. With Xeloda, I’m wondering how realistic this is. Today (Saturday) was not bad. I felt like I could have a quick nap late morning after walking the dog but managed to fight it. I did a few chores around the house before walking the dog again. Not too bad and for the most part I was pretty much okay (ready for bed now but it’s close to bed time). But work days? OMG! I am barely able to make it to noon before I am yawning like crazy and I fight sleep throughout the day. By the time I get home, I could easily just go to bed. I am not focused and don’t feel I am contributing as I should. If this doesn’t improve..... but also afraid to mess with dose at the moment as we have struggled to find a treatment that works.
I do have scans coming up and hope to see some positive results. Last one was stable but it was early days. Thanks for the good wishes.
Happy new year to all. Wishing us health, happiness and stress free days!
Pat.
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3 years on X and I have to say the fatigue is not as bad as it used to be. But don't ask me when that started. I don't remember (my favorite, or at least most common, saying)! HFS is the worst it's ever been. Today is suppose to be my last day "off", but I may take a couple more. They itch something horrible, hands and soles of my feet.
HLB, I think the highest my markers have been were in the 180's. And I do agree that the small rises, or any rises for that matter, could mean nothing at all. And I am not in any pain anywhere.
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pat, yes, we are both trying to stay working ft and I am having the same problem. After lunch it's so hard to stay awake and it doesn't help that I sit at a computer and read medical reports all day. IDK what the solution is. I did read a post from years ago where someone said olive leaf extract really helped with fatigue. I have yet to try it though. Every other day I am ordering supplements to try to help with some kind of se. I guess that will probably be next. Hopefully it will lessen as we get used to treatment. Usually I can tell if something is working because I get more energy. I think its because when cancer is active it takes a lot of my energy. So maybe when tm goes down to normal it will get better.
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I took my doses at noonish and midnightish. But I had the option to sleep all day and night unless there were appointments. Never in the world could I have worked more than a few hours and that would have been at the computer. I did take 4 and 4 at the beginning (after working my way up slowly to that level, onc was watching for sensitivities) and the last two months was at 2 and 4 or 5. The exhaustion was as bad later, maybe even moreso. For me length of time did not help.
HLB - the new onc is the one I didn't fire. The one before was left in my dust out of there. That one whom I fired, he thought the X did not work at all. But the new one I like said he doesn't agree with the one I fired. But he doesn't want me to take it right now anyway, he said it is imperative to my future treatments that I become stronger so I can handle more aggressive IF I choose to go there. I knew that was true, no doubt. And today I walked around house, dug through freezer, got food in oven from freezer, dressed, did bills and all sorts of stuff. Before getting off X for this vacation, I would not have bneen out of bed until now. : )
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kimchee yes to both questions. My hair is very slowly coming back like Dianarose, a short crew cut. The fatigue is awful so every couple of days I cut my dose by one pill and it seems to have helped. Don't know what it means for scans but QOL is imperative to me. I actually was able to do some crafting this week! So far no HFS but only on my second week of second cycle, 14 on 7 off. My appetite was another thing in the dumpster but have found a good CBD solution for that so my energy is getting a little better.
pajim, you are sooooooo lucky to be an energizer bunny on this! And hurray to no mets!
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Does anyone feel worse on their week off. Seems like I have way more nausea and an upset stomach on the week off. Maybe it’s just me. Sometimes I think this disease is making me insane. My tumor marker went down 4 more points and is now at 54 and instead of jumping with joy my mind says when is the other shoe going to drop. They need to come up with a better drug to help us mentally. One that keeps us in denial so we can function
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Dianarose - a drug to keep us in denial. That is a stroke of genius. I felt worse all the time but the end of the week off was a small reprieve, then begin again.
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I know I'm lucky and feel awful for you ladies who have more problems. To me nausea would be the worst, followed by pain then fatigue. I suspect it's because of the low dose, but so long as the tumors aren't growing I see no reason to increase said dose.
If I have an afternoon meeting I do have a trouble staying awake between 2:30 and 3:00. So you guys having the low after lunch, I totally get that. I often get up and walk around the floor for a few minutes, even if it's in the middle of a meeting.
Dianarose, I feel best the first few days of the cycle.
Photogirl -- glad to hear your CT is good. things besides cancer can affect CA27-29 so don't worry about a few points here and there. You're looking for big jump or an upward trend.
Happy New Year everyone! May this year be better than last year.
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Diana, I feel the best on my last few days of "vacation" and the beginning of the cycle. I think we don't feel well on our weeks off as the drugs are in our system, 2 weeks worth. Here is the latest pic of one of my feet. I'm suppose to start my pills today, but feeling like I need more time off. You can see where I peeled off some skin. Hurts like a mother. Middle of the sole, burns, hurts and itches. I'm certainly grateful for the 3 years I have had on X, just not sure how much more I can take.
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Goldie- three years on x is amazing. Gives me hope. Sorry about your feet. Mine are starting to look a meds with peeling skin but don’t hurt yet. Seems like lotion doesn’t do a thing for it. The air is so dry here and with our temperatures being below zero for so long doesn’t help. It was 22 below zero this morning and supposed to be colder this weekend. This is crazy with no end in sight.
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dianarose i feel better the first week on. I'm experimenting with 7/7. My spell check changed your name to canadians. When I corrected it it changed it to dramatize. Still getting used to this device. I would rather just make my own typos.
Bluebird I'm glad you are finally feeling better.
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Goldie, that looks painful!
Bluebird, glad getting off the drug is making you feel better. Often I wonder if we should consider extra weeks off like they do with Ibrance.
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Pajim and Photogirl, congrats on stable scans. Artist, hearing that you were able to do some crafting brightened my day. Bluebird, getting you stronger and feeling better sounds like an excellent plan. I'm liking this onc who offers kindness and hope. Goldie, your poor feet. Have you tried Lansinoh on the cracked places? Talked about a new schedule or dose? Dianarose, it's like you got used to things going badly and now your mind hardly knows what to do. I'm offering you a hug.
Like many of you, I feel best the end of my week off and the beginning of week 1 on. But there seems to be no rhyme or reason to when my fingertips are sore, peeling, and starting to crack, and when they smooth out and feel better. I was thinking a little family jam session might be fun, then realized I cannot play my guitar without injuring my fingers. Thank goodness my feet are still ok and I can dance.
Wishing us all a good 2018.
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Oh, I meant to ask if anyone has had toe nails affected by Xeloda. My big toe nails looked a little odd after Taxol; maybe they were starting to lift? That white area grew out to the edge. But now the white area seems to have gotten bigger. Both big toe nails look similar, with almost symmetrical weirdness. Would I show them to a podiatrist, or a dermatologist?
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Shetland, my nails are lifting too. Toes and fingers both. Both big toes and like you said the same symmetrical weirdness! I put some Braggs ACV in an old syringe, and put that under the nail a couple times a day. It helps, but takes a long time for the nail to grow out. My nails are also super brittle.
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Yes, one of my big toenails is looking like I'm going to lose it. Not immediately but eventually. The left side is coming loose from the toe.
The rest of the toes are getting pretty white in spots. Maybe that's lifting as well? I haven't thought much about it as I didn't think there was anything I could do about it. They don't hurt or anything.
Fingernails are fine.
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So tomorrow I talk to the doctor to see if I stay on the same dose or they lower it . This week I still sleep a lot and feel weak . I want to stay on Xeloda cause I know it's doing it's job.
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Kimchee I'm in the same position as you. I've had a terrible time with my feet over the last few weeks, and I feel I should reduce my dose. But I had such a great result in my last scan I feel I want to keep on going and don't want to tempt fate. In the nd I think my current situation with my feet is unsustainable and so I will talk with my MO at my appointment on Friday, it's so frustrating to have a disease where the treatment is so cruel.
For those talking about toenails. A number of mine are showing signs they are on the way out. Fingers and toes feel so tender and tight. Not looking forward to them going as I remember that from Taxol.
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I know I don't really belong here anymore, since I am off Xeloda. But had to say I come back to read. I miss Xeloda, really. It gave me a false security that the lymph nodes would not get large and block my airways AGAIN, that my right lung would not collapse again. But liver lesions were growing and the Xeloda was causing me too much physical grief. So am on Aromasin.
Celebrating that today at hospital I had a wheelchair but I started out PUSHING MY CHAIR around the hospital. When I was in the chair I used my legs to walk it, love that feeling.
On Lita's thread someone posted a protocol that includes Xeloda, if anyone is interested. Bruzynski's Canter Center, a private center.
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Well, it is reassuring to know that I am not the only one with signs of toe nail lifting. I poked around the internet but the most promising articles are behind paywalls. I did learn that onycholysis is indeed sometimes associated with capetcitabine (as well as taxanes and anthracyclines). It may appear white or yellow. The first (big) toe is the most common site. As far as what to do, I read that UV/sun exposure to the nails while on chemo may play a part in its development. I don't wear sandals often, but I guess it will be never now.
Bluebird, how great that you are now pushing the chair! You are making good progress.
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Shetland, I also lost the toenail on one of my little toes. It never hurt, so I was surprised to notice one day that it was almost complete lifted. Then a few days later it was gone. And a couple of other nails including my big toe on the same foot are quite discolored, as is my big toe itself (the skin). I am torn between wanting to polish my toe nails -- afraid to get an actual pedicure -- but also wanting to keep a close eye on the discoloration/possible lifting. And I haven't worn open toed shoes since starting X -- mostly because my feet look so bad. So I don't think the sun is a factor for me with this med. There has also been some discussion about this in the FB Xeloda group, so I know it's pretty common.
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