All about Xeloda
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you remember correctly. I am currently on Kadcyla or TDM1.
It’s going well. Some bumps in the beginning. Had s reaction on the first infusion so now we premedicate and things are going on. First scans showed a slight decrease in tumor size so we stayed the course. Due for scans again in February.
I am still working out the SE and my new normal routines but getting there.
Miss you guys and think of you often.
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LFF, how often do you get it and what are the SE's? Is this a chemo for ER/PR- and HER2+
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Dianarose-Tykerb has been out for several years. Similar to Herceptin, but Tykerb passes through the blood-brain barrier.
So it is often used for those with brain mets.
Just talked to my chemo nurse and now I won't be getting Xeloda & Tykerb. My tumor is BRCA2 positive, so if they can get help for me with the co-pays, I will be going on a PARP inhibitor called Olaparib.
Good luck to all, and if the Olaparib doesn't work, then Xeloda might be next.
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Goldie- I get an infusion once every 3 weeks. I am still figuring out SE but they are t as bad as previous treatments.
It is used for ER/PR- Her 2+ patients. It is kinda Herceptin plus where a chemo agent is attached to the drug and gets delivered only to Over active Her2 receptors.
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LFF, thanks for replying. I guess that won't be a drug I will be asking for! I don't have much left, other than Ibrance to try ( I think). Then after that, IV chemo with I think Taxol. Not wanting to go that route, just don't. It would take a lot to convince me to do it.
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Goldie- please don’t write it off. Even after what I described, I found it very tolerable. I just wanted to let you know what I had experienced.
Talk with your MO about it. It really can be easy to live with. Other times not so much. It is still worth a try if you are up for it.
It is up to you to decide.
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Thanks again LFF. I'm still ok on X, but I am ER+ PR+ HER-, so I don't think it's for me? Totally opposite from you. I hope you do as well on that as you did Madame X.
I wonder if after a time you can go back to a drug that failed, to give it another shot?
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Thanks again LFF. I'm still ok on X, but I am ER+ PR+ HER-, so I don't think it's for me? Totally opposite from you. I hope you do as well on that as you did Madame X.
I wonder if after a time you can go back to a drug that failed, to give it another shot?
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Xeloda is not specific to Her2+ BC. I was only put on it because the drug targeted fir Her2+Cancer had damaged my heart. The rest of the drugs that were available fir Her2 were also cardio toxic. So they put me on Xeloda.
Many of the people on the Xeloda thread are hormone receptor positive. So it could work for you.
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Oh LFF, I'm already on X, for over 3 years now. I was looking for other alternatives in treatment other than Ibrance. The low blood counts scare me. I live in a very rural area, my onc is an 8 hour round trip drive every 6 weeks. To do IV chemo again, I would most likely have to do it locally and I DO NOT like our hospital at all here where I live. Hoping to get 2 more years on X, like you! But my tumor markers are inching up. Which is why I asked which one you moved on to.
Again, thx for the reply.
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hoping for you Goldie that Xelodakeeps working for you.
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Good to see you Leftfoot and Denny as well! 16 years seems like a dream to me! Hope the new Tx treats you well.
Dianarose, Good news on the CT!
Thanks Goldie, my toes are starting to be a bit numb and ache at night in bed. My hands are so numb I am surprised i can do anything. No peeling or cracking yet......I hope you can stay on X for another 2 years or longer too! I have all heard from many women on here that Taxol wasn't so bad.....
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I don’t remember if I posted this already so I will again. When my husband had labs drawn last week they had just put up some posters in the waiting area. It said not to use or take any biotin products 24 hours before having your blood drawn as it can effect the test results. One of them listed was the CA125 marker test. Going to ask MO about this
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I've decided that showers are dangerous. I don't shower every day (gasp!) because it's better for my feet to have several layers of lotion on them.
But then when I get in the shower and step on the wet tile floor, oh my. I feel like I'm skating or I'm going down. At least until the lotion washes off and I'm stable again. Of course, one look at the bottom of my feet and I'm applying lotion again.
Until the next time. . .
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Hello ladies - I start xeloda 2500mg tomorrow after progression to bone/liver on Abraxane. Any tips are welcome! Today was an extra long day getting spine MRI (no activity).Thanks LFF! I will be having rads to left dura soon, they want one more head MRI - why not? lol I lost 15 pounds on A-train, does x make you gain or lose? Glad to be keeping my hair except for where the rads will hit. oy SP how are you doing? Pam looks like your feet are having some issues. DianaRose - I will take note of the biotin warning as I take it every day. Hi Artist! If anyone can pm me, please do or show me a hand or foot pic so I can get a better handle on my future. I have a cruise planned in May - how walkable will that be 4 mos into x?
What a Friday.
(()) Claire
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lalady, I have finished my 3rd cycle of X and so far no peeling or cracking. Just more finger tingling and they look wrinkled and sometimes at night my feet feel a little burning sensation or achey. It does not impede my walking. I slather lotion after every bath. don't know if I am lucky or it's coming later......Also when I first started I got a lot of nausea so lost weight and the fatigue was a bummer but it leveled off for now. I also get loss of appetite when the ascites build up. I really make myself find food I can tolerate as I already am pretty thin.
Pam, sounds like you need a good rubber mat! Be careful...
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LaLa Lady: Welcome to the land of X. I've been on Xeoda since end of August last year. My first round (10 pills a day) was excruciating with plenty of blisters and bad nausea. I went down to 8 pills a day and was great for a number of cycles. Recently I redeveloped bad feet - and I've come down to 7 tablets a day, and also had an extra week off. I think keeping my feet ( and hands) cool is essential. I got a gel pad - designed for pillows - which I use in bed to could down my feet at night. Its great -you dont need to put it into the fridge/freezer at all as it seems to get cool on its own for the next night. Here is link to the Amazon entry for this pad (I put a picture on my last post on Jan 21st) Feet are now much better. Not great for long walks, as still quite tender, but I think I can start up a bit more than I've been doing in the last few weeks.
I would say keep an beady eye on your feet and hands and apply plenty of lotion. I use 'udder cream'. I have a pot for general moisturizing and a tube of hand cream I carry with me. I did get very bad side effects at the beginning but these seem to be under control, I just try to stay on the highest dose I can.
Best of luck with Ms X, I had fantastic scans after 3 months on it - with 50% and 30% reduction in spots in my liver. Its is a bind trying to get over the side effects - and I feel nervous about my feet and so dont do the walking I woud like. But as with any of the drugs - prevention is the best approach. I keep Zofran handy for when I feel nauseous, which is less nowadays. I have a scan in a week or two (waiting for the booking) so am hanging onin hope but have the underlying scanxiety as usual.
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Pajim, please be careful in the shower! And it doesn't matter (at least for me)what lotion I use or how often, once the feet dry out and absorb, they are back to what they looked like before. But they are "soothed" with the lotion on. I like wearing my silicone socks, especially if I'm just watching tv or working on the computer. I wear for for a few hours, as I don't think the feet get any air, and I'm not sure if it's a good idea to wear them longer.
Lalady, I don't think you should have any trouble for your cruise. The HFS doesn't show up right away and gets worse the longer you are on it. As for me, I've been on it for 3 years. So go and enjoy that cruise. 2500 mg is about all I can handle.
Schwilly, my mouth hits the ground at you taking 10 pills, oh my lord! I think that would literally have killed me! Sorry about the scanxiety, we all know what that's about! Good luck on those scans, hoping for nothing but good!
I would suggest to try to avoid as much friction as you can on your feet. HFS is unavoidable, as it's the drug leaching through these areas.
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Lalady- we went on a cruise in December. Had a blast. Going on another to Bermuda in May. Screw this cancer! I’m still going to enjoy life whenever I can!
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I had a scan last week and get the results Monday. Nervous. Xeloda is now pretty tolerable for me now with the 7/7 schedule and 6 pills a day. I hope that I can stay on it.
I'm going to a cruise in Norway in two weeks, to see the Northern Lights, an item on my bucket list. My other item is to get a Maine Coon cat. I've put a deposit down on a kitten - hope she arrives soon!
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how fun to get a maine coon cat! Love them but my allergies do not
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Ladies - thank you for your kind insightful advice. I had a meltdown after meeting with the RO who scared me with talk of WBR. After hearing met is "in dura only", I was able to sleep last night and have rejoined the living - so will not cancel my cruise (Mr. Cancer is not ruining my shot at Stonehenge and Harrods!). I made an error in my pills; I start Sunday at 3000mg (3 in am 3 in pm for 7 days on/off. Onc said she would adjust me to 2500 as needed, as we will do blood markers in one month. Scwilly thank for you the cool feet pillow link. I'm sure my wild black persian kitten will get used to it. His antics bring a lot of joy - so yes to pets who keep us moving. Minxie - go for Norway (it's lovely and get a fun Maine Coon kitten). Goldie - glad to see you are on this a long time, I am planning to keep working but wonder what my work shoes will look like. lol
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My dear Lalady, you have been through the ringer lately. I’m so sorry that you came off Abraxane and cold caps only to face radiation to your head. I can hear you are afraid of Xeloda, but wait and see. It may not be what you imagine. If you get bad hfs, they will adjust the dose. As Goldie says, your hands and feet will likely be fine for your cruise. Good for you, turning your back on cancer and keeping your cruise plans. It will be awesome. Enjoy the wild kitty!
Minxie, I love your plans for the northern lights and the kitten. What great list items.
I guess cruising and cats are the thing to do!
Pajim, lol, for quite a while I puzzled over why my shower floor was so slippery. What were they using to clean it that was so slippery? Of course it turns out to be my foot lotion.
At about nine months on X I am still doing well, with normal TM. If you look at my hands and feet you might notice redness and a little peeling, but hfs is not interfering with my life. I do work smart and avoid things that might hurt my fingertips, like tape or tight lids. I wouldn’t risk playing my guitar, but I only play it occasionally anyway. Tiredness has been a constant whatever the treatment, but I adjust.
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LaLady (Sorry I added another la before!) - how wonderful to have a trip planned - sounds like you are heading to my home country. Say 'Hello' and have great fun! Wishing you great success with Xeloda and experience few and manageable side effects
Sarah
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LaLady, welcome! I'm sorry Abraxane didn't do the job.
Don't worry about travelling. I've been at this eight months now and have been on the road everywhere. I went through a set of peeling three cycles in but no pain. Blisters yes. If you read back four months you'll read how POed I was when I had blisters in Copenhagen and had to stay in for a day whilst everyone went walking. I've noticed that each cycle is slightly different. It may depend on how much walking.
My suggestion for trips with lots of walking or trips where it really matters (not my work trips), take a few extra days off. So either work the cycle so that your cruise is your week off, or if it's Days 1-7, start the pills about day 4.
My husband has surprised me with a lovely golf trip for my birthday. We go in exactly one month. Normally it would be Day 3-9 but I'm going to make it day 0-5. Else I'd be worried about blisters. My onc shrugs and says life is important. Have fun.
FYI I've gained 8 pounds. Exercising is hard because of worry about my feet.
Minxie, I hope your cruise is fabulous and that you get to see the Northern Lights. That's on my bucket list too.
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A/C made my feet a total mess and I would soak them in nice lavender scented Epsom salt. Helped quite a bit. I am lucky I have had no hand or foot issues after five cycles on madam X.
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LaLady, are you on your feet a lot at work? If so, I think it may create a problem, but down the road a ways.
Minx OMG, I had to look up the cat, they get HUGE! And look a lot like a bobcat to me…but bigger!
My feet get the worse towards the end of my cycle and beginning of week off, and even more so if I do a lot of walking. By the end of the day they are so red and so sore. But lotion and they are up during the night, so in the morning they are not too bad.
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Goldie - you're so cute.
Lindalou - I did 10 cycles of Xeloda. For me the fatigue never gave up. Maybe the Femara w it? I don't know. I eventually took more at night and less at noon so I could function better. Still, was down and out until two mo after going off.
Stopping by to say the Xeloda made my curly hair quite straight. But now the curl has popped back out. I get comments on good I look as compared to the last year +. And now I am on palliative car program with hospice.
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Goldie - I am mostly at my computer at work - but I have to moderate a panel in March. Hope I can still wear low heels. In April I have a biz trip to NYC and late May is my flight to London and UK cruise. I may take an extra week off x as needed. I want to finish this cruise! Today I had another head MRI with contrast - as I am laying there in an out of the bad sound machine, the nurse whips up my sleeve for another contrast shot. Recall I had this on 1/19 as well. Came home rather nauseous. I go back tomorrow for the head mask mold and a run through, xanax in hand or in mouth. So far I'm swallowing 3 pills every twice a day ok.
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BB, thank you for the cute comment. Hate hearing when any of us has to go on hospice. I just hate it! Are you on another treatment now, or just managing pain? My hair has always been wavy, not so much anymore. I wonder now if it isn't Madame X? Wishing you a long run with palliative care.
Lady, you had a scan a month ago and they are doing another? Hard to remember what everyone is dealing with, I assume you have brain mets, hence the face mask? I adjust my meds all the time, as I feel is needed. I might quit taking them a day early or wait an extra day to start. One night mid cycle, I didn't feel like taking my evening dose, but I didn't feel like eating, so I just skipped that dose. I am on 5 pills a day. 2 in the morning, 3 in the evening. I think you will do fine on your trips, unless you will be getting WBR, not sure how that would affect you.
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