All about Xeloda
Comments
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wow that is so crazy how breast cancer can just change like that. When I failed Ibrance on month 4 we thought I may have changed to HER2+ or TNBC...but it was still HER2-....
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Hello. My name is Melanie. Ive been stage iv for 3 years on faslodex and my recent ct scan showed thickening on the colon. Colonoscopy biopsy showed ILC mets to colon. Also they put a stent in my left ureter monday cause they think the cancer is blocking the ureter. My status changed to triple negative and today I was told my new treatment wouldbe Xeloda. Im reading up on this thread hoping for tips. Thanks.
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Hi Melanie (my daughter's name!)
Sorry to hear about your recent dx and I hope that Xeloda works well for you. Basically, take the pills a half hour after a high protein meal or snack at 10-12 hours apart.
I have been on it for 2 years and I use Aquaphor on my hands and feet with food service gloves and silicone socks. X has kept me at NED for 2 years so far.
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Melanie, good advice from Denny. I found X to be more tolerable after being on it for awhile. It also depends on your dose. I am no longer on it, but had almost a 5 year run on it. SE's were worse in the beginning, but tapered off. I would say that the hand/foot syndrome, HFS is the worse. There are lots of mild ones tho and different for everyone. Sorry to hear about the colon, that is not a "typical" place that BC goes to, and sorry to hear about the TN. So very strange how this disease changes! Good luck to you my friend.
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Thank you ladies. I appreciate all advice and glad to hear it has worked for a long time for you.
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After absence of about ten months, I am back on this forum for my wife who has MBC since Dec.2014. She started on Xeloda in January this year after getting SBRT in the abdomen to resolve liver mets. Her dose had to be reduced several times because of the severe HFS. Currently she is on 1000mgX2 daily dose, one week on and one week off. Although she still has burning sensation and swelling on her hands and feet, these symptoms seem to be tolerable with extensive use of Bag Balm. In addition, we have noticed that her fingers have started to deform slightly. We dont know if this is due to Xeloda or something else. Her Oncologist suggested reducing the dose further to 800mgX2 daily but my wife does not feel comfortable and has decided to continue with the current dose. Has any body on this forum had experience with 800X2 daily dose, one week on and one week off cycle? Also, has any body on Xeloda experieced deformation of fingers?
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Mel, I don't know whether these will help you or not, but when I started Xeloda, I read through many pages of the string and cut and pasted comments I thought might help me cope.
Here is my document. Good luck going forward!
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Hi Melanie, you will find lots of helpful advice on this thread and already have. Denny, Joyner, and Goldie ROCK!
I am a newbie also, now in my 9th week of xeloda and will know early in January whether I'm going to continue on it.
I hope so because even at my high dose - 1500 mg in the morning and again at night two weeks on one week off - has been very tolerable. I had some mild digestive issues and loss of appetite during the second three weeks cycle but those haven't been a problem this time. I do have to stay on top of my bowel movements to keep from being too sluggish or constipated which always makes me sick! Fatigue has been my greatest issue especially during the second week of each cycle. I do have HFS but it is tolerable so far. My hands especially are very red and tender. I use bag balm at night and wear cotton socks and cotton gloves to bed. During the day when I remember I use a lighter cream like Udderly Smooth.
Good luck on X, welcome, and Happy Holidays!
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Concerned..... my fingers with the tighter skin are hard to straighten out. But they appear to look the same.
My little toes, however, are turning sideways, which is weird. I have been on X for 2 years.
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Re Xeloda & Insomnia,
I have had very serious issues with insomnia for many years and also suffer from Chronic Fatigue Syndrom. I have been through the initial chemos, double mastectomy and radiation and while I had some issues with the Dexamethasone and sleep, I used a natural remedy called Phosphatidyl Serine to reduce my cortasol levels.
I just started Xeloda 3 weeks ago 2 weeks on 1 week off. I noticed my sleep had gotten a bit worse after the first week (I found it harder to get back to sleep after I woke around 4.30-5.30), but I chalked this up to my very gradual reduction of my estrogen patch and stopped reducing it. Then at the end of the 2 weeks of taking the Xeloda I began waking at 1.30-2,30 and again at my usual time. I didn't think it was related to my hormones, as I hadn't reduced them anymore and I wasn't feeling hot, but even after 7 days of being off of the Xeloda, and no futher hormone changes, I am still waking twice per night. I have had to increase my Nitrazepam (a benzo) on two occasions, but always have to reduce or it stops working for me very quickly. My oncologist suggested I take 5-10 mg of melatonin, but I find that even taking 2 mg makes me constipated, so 5-10 mg is not an option for me. I will list the things you could try, and they may be enough to keep you going, unfortunately, they are not enough for me as I can't tolerate this kind of interupted sleep for long because of my ME.
Lemon Balm Tea ( It grows like a weed in my garden) My pharmacist has approved this, but only as a tea, not in capsule form.
Sublinox (I take 1/2 of a tablet max 2 x per week or it stops working and is addictive). I don't find this gives me refreshed sleep but it's better than no sleep
Diphenhydramine (I take 1 extra strength tablet no more than 2x per week) I find it doesn't work more than twice a week and is also linked to memory loss if used regularly for long periods of time.
NB I only take one of the above three at the same time. Also, I had the cancer agency pharmacist check all of the interactions with these drugs and Xeloda and the Herceptin which I am on.
Also, when I wake at 1,30-2 ish, I find that putting a cold pack on the back of my neck helps me get back to sleep if I feel at all hot.
I will keep you posted if I find a remedy and would be grateful if you could add anything that you find out.
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Hi there, I will be joining you ladies after a short course of rads due to a crack in my sternum. I recognize some old friends and look forward to making new ones on this journey. I may be the only one taking Xeloda in a two-drug combo with Ixempra. My MO says it should be a tolerable treatment, but of course she always says that, and what I've read about Ixempra, and now with the Xeloda overlay, is making me a little nervous. In the meantime I'll read back several pages and also Joyner's comments (thanks for sharing!)
Wishing everyone as good a holiday as possible. Hugs from JL
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Welcome, Jaylea! I'm glad to see you but sorry that you have to be here or anywhere else on this string!
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Denny, so strange that your little toes are turning out. Could it be arthritis?
Dharma, I too have trouble falling asleep or if I wake up, going back to sleep. I found what helps me most is Melatonin, but it has 5-HTP, it's to help you go back to sleep. On occasion, I also take some medical mamajuana with THC, fully extracted feco oil or commonly known as RSO (rick simpsom oil). I'm off X now and on to a new drug.
Jay, never heard of the addition you have with X. I hope it works! What dose of X does she have you on?
Joy, none of us want to be here, but we are, and I'm so glad I have so many friends here to share my experience, ask for advice, sometimes give it, and most of all, we are supportive to everyone. I don't think I will ever leave these boards, until....well you know!
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Agreed, Goldie!!!
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Dharma-I always wake up at 3 am, but that is when I need to pee. Then a lot of times I have a hard time falling back to sleep. I have a lot of non-BC friends who also wake up in the middle of the night and can't fall back to sleep. I thought that was natural???
I used to take Melatonin when I was on Kadcyla, and it seemed to help then, but no longer helps. Sometimes I resort to Benadryl but I know that frequent use is not good.
Goldie-I don't think that my little toes have arthritis, since they only ache one in a while, and they just turned in the last few months.
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Girls-
I have a trick to stay asleep. It has worked amazingly well for me, but it's sort of a long explanation, so quit reading if you have no sleep issues. And it may not work for anyone else. This is a skill and requires practice. It works better and better over time, as my brain seems to go into auto-pilot, and it works virtually every time for me, unless I have had caffeine. Caffeine is a non-starter, and I just have to wait that out.
It occurred to me a while back that when a doctor is using a stethoscope and asks me to take deep breaths, it tends sometimes to make me a bit dizzy from hyperventilation. I thought that might help me get to sleep. SO, I started trying to focus on taking long deep breaths until I got dizzy. This sort of worked, but I found that my mind kept skipping around.
SO, I tried focusing on what I could see with my eyes closed in the dark. If you really concentrate and focus your closed eyes, you'll start to see patterns and movement, and for me, soft bursts of subdued light. I make myself focus absolutely and narrowly on whatever I can see. For me, it's all sort of soft colors and movement on a dark background, but it looks like nothing is there unless you take your time and focus.
I find that the combination of slow, very deep breathing with the absolute focus on what I am observing with my eyes closed puts me to sleep. The psychologist in my palliative care doctor's practice recently asked if I needed help with sleep, because, she said, she could teach me "self-hypnosis". I told her that I actually had no trouble sleeping and about my procedure. She looked up with a start and said, "Oh, my gosh….you have taught yourself self-hypnosis!" So funny, but it works consistently for me.
Here's the thing: this is truly a learned skill, and it works better and better as your brain and body get used to it. It may be worth a try.
--Lynn
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Interesting article today in Oncology Business Review:
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Joyner-thanks! I do close my eyes and focus. I always see a bright speck that pulses. Will have to try the deep breathing with it.
Interesting article! 18 years ago, I learned not to drink green tea the day before, day of, and day after getting chemo since antioxidants were proven back then that they keep the chemo from working.
My specialty pharmacist told me to avoid my Centrum vitamins those days around my Herceptin IV since the Iron in the vitamins can keep the Herceptin from working.
All of the reasons indicated in the article have really been known for at least 18 years, and try as I might, I can't convince patients to quit taking weird supplements after reading some vague article about them being "miracle cures".
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Good Morning All,
Santa brought me an early holiday present! After 3 Cycles after 9 weeks on Xeloda, my scan yesterday showed "significant shrinkage" of my liver tumors and my TMs dropped dramatically!
My doctor a 40-year practitioner, was clearly surprised by the great response, and he said that the radiologist was amazed at the difference between this scan and my last!!!
He even gave me a little hug as we parted.
My liver values were all good except for my bilirubin, which has risen, but I'll have another blood test in 3 weeks to see how that's going!
My holidays are going to be a LOT happier now!
Happy Holidays to all!
Katty
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Oh, Katty....hooray, hooray, HOORAY!! And merry Christmas!!!
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Katty, that is great, so happy for you!
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Fantastic Katty,
And Happy Holidays to everyone !
-Meja
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Yay Katty! Great news!
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I’m curious if anyone has experienced a non-itchy rash on Xeloda? I have a rash on my left forarm, hand and thumb that looks similar to Dyshidrotic Eczema but is not improving with steroid cream. My oncologist referred me to a dermatologist at MSK who I’m seeing shortly after the new year. I’m trying to determine if it’s related to Xeloda or something else entirely.
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I have pink spots on my scalp...right at the top of my head. Dermatologist didn't know what caused it, but when I had to take a break from Xeloda, the spots went away. when I started back on X, the spots came back.
Sometimes it does get itchy so I use Clobetasol liquid on it...got a script for it.
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Denny, back to an earlier post of yours, I agree about the large doses of antioxidants. When I was first diagnosed in 2003 that information about it interfering with chemo was around, so I avoided all of the well-meaning advice to bombard myself with antioxidants.
I do drink green tea but only a couple of cups a week, mainly because I'm a coffee addict, not because I'm worried about it interfering with treatment. There are supplements I really should be taking for my bad knee and I'd like to try astralagus for energy as I have ZERO, but I really don't want to mess with the fabulous xeloda response right now.
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Katty-I was big into healthy teas like that, but Kadcyla messed with my taste buds which continues now with X. I can't stand the taste of them now. I do still have 2 cups of coffee a day. The only kind of coffee that I can now tolerate is Aldi bold roast, since the others taste bad now.
After 18 years of chemo, my fatigue is really bad. My nurses tell me that nothing that I can do to help the fatigue since it is my body fighting my cancer.
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Katty...omgosh I am sooo happy happy happy for you !!! (((((((hugs))))))
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Katty that is so awesome. JoynerL thanks for the comments doc. Ive read it and saved it. I will start the Xeloda in Sunday. Im already nauseous so Im going to try to get some zophran. My feet are already bad so I will work on them. Thanks everyone for all the tips. Im s thankful for yall.
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Melanie... I like Emetrol better than Zofran! It is OTC and works pretty well.
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