All about Xeloda
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peanut. Glad tn going down. Sorry to hear about hand foot stuff. Yuck. Hang in there
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Hi ladies. I just finished my first course of Xeloda (1800 mg 2x a day) and wound up in the hospital for a week with colitis and a c diff infection. I'm fortunate that I had what is considered a mild case of c diff but scary to think how this one drug wreaked havoc on my GI system. I have progression in my liver so my onc was hoping this would be a mild form of chemo that would be effective on my liver. Anyone else have such an extreme reaction to Xeloda? I'm her2+ and so far I've been through Kadcyla and perjeta. Not sure what will be next. Any clues? Scary to think of what lies ahead.
Cathy
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Swimmom3,
Same here, bad colitis, vomiting & diahrrhea with Xeloda. I tried taxol first, but same SE. Ended up several times in the hospital for heart condition as well from taxol and a broken wrist from losing my balance and falling all the time.
Feel much better off of these meds, but do not know what will be next. I'm still doing Xgeva for the bone mets. I also have liver mets & had a tumor in my pituitary last year. I may just do PET scans & MRI's to see if I can stay stable for awhile. I hate chemo.
Terri
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cmlbrower: I am on my second cycle of Xeloda so it's still very new to me. I understand how you are feeling after reading about side effects...those first few doses were difficult for me to take. After reading the many suggestions here I started taking a probiotic every day...the few times I have had fairly bad diarrhea I took an Imodium .Have had some am nausea so I try to eat right away. I am also pampering my feet..no hfs yet but may show up anytime. Hope the Xeloda is easy on you...there's lots of good advice on these boards...let us know how you're doing!
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Swim, I am so sorry to hear that your white blood count has been so challenged by Xeloda. My WBC has been totally unaffected by this drug, especially when compared to my experience with Ibrance. As you can see from my signature, I am Her2- so perhaps my experience isn't all that helpful to you.
Mostly, I wanted to let you know that I read and was affected by your story. I hope you figure this out.
*susan*
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Does anyone know of a 20% urea cream without parabens? I have been using O'Keefe's healthy feet cream (on hands and feet) but found that alternating that with 20% urea cream works better. O'Keefe's contains urea but the % is unspecified and it is definitely lower as the cream doesn't tout urea and it is low on the ingredient list. I don't like using parabens but have currently given in because my HFS is getting worse and worse on my hands with each cycle. Starting to blister in a few areas, in addition to the pain, swelling, redness, peeling and cracking!
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JFL. Maybe you should try the 2 prescriptions I'm using. They've made my feet so much better. 6% salicylic acid cream and 0.05% clobetasol foam. It's helped my hands but they're still troublesome since they're always in use.
Swim and ibcmets. I would strongly suggest a daily probiotic. My GI told me to start taking it before I went on X and I haven't had any stomach issues thank god
Babs
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I met with my oncologist yesterday and she doesn't think it's the X that is making me this tired and zoned out. She said really has never seen anybody with this kind of reaction (although she did say that I am starting to show signs of H&F syndrome).
My MO (who has spent her entire career at Sloan Kettering) said that really knows nothing about one of the anti-seizure meds that I am on (it's called Onfi) and her nurse has never even heard of it. They both suggested to call my neurologist once he is back in the office tomorrow and discuss it with him.
So between seeing my MO every month, getting herceptin every three weeks, dealing with my cancer caused seizure disorder, regular check-ins for my brain mets, physical therapy, and having a consult with a gastroenterologist this week (they found what they think is a hiatal hernia on my last scan), life has just been a ball. Oh by the way, did I mention that I still work full-time, live by myself and am only 35??
Sorry, just feeling down and needed to vent.
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Becs we all need to vent. At least it sounds like you don't have any time to be bored. Sometimes I wish that I was living by myself. I have a 2 year old grandson to tend to and my son and my husband and do all the laundry pay all the bills and till just recently was working full time. I just got signed up fo SSDI. I tried to hire someone to clean my house and my pain medicine and anxiety medication was taken. I also have muscular dystrophy which also hinders me. When I am feeling stressed and feel like moving out I try to think of positive things. By the way do you want a roommate (just kidding 😀
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Becs. This is the perfect place to vent docent away. We're all here for you!!!
Bab
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Thanks Ladies. Some of the main side effects of anti-seizure meds are irritableness, so I guess I am feeling that.
I am just so sick of this sh**. I see single people my age posting about summer concerts, outside happy hours, beach days, even drinks at brunch. That used to be my life and I didn't appreciate it at the time.
I always thought one day I'll get married, have kids, settle down. Now I am never going to be able to do that either. I guess I see all of my friends going about, doing the things they are supposed to do and I am stuck in cancerland. After over 2 years, it is still hitting me that this will always be my life and I'm mourning for everything I have lost; any possible new relationships, starting a family, moving on in my career that I have worked so hard on...
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becs-
I think your fatigue is probably due to the seizure meds. My life was very miserable ( worst I remember) while on my seizure meds after my brain surgery. I hated life. I don't drink coffe so ended up drinking to a of Dr Pepper and Mountain Dew just to stay awake. I couldn't process anything and was not a nice person. Felt much better after coming off them.
I second talking to your neuro Doctor to see if they can change something. There are lots is seizure meds and some are better tolerated than others.
Hugs to you.
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Becs,
You have every right to be done with this sh*t. By the time my sister was your age, she had had cancer three times! Two with 0% chance of survival. The difference? She is years out now, and alive, and at the point Dana Farber doesn't even want to have her for follow up appointments. For us, this is the future.
And mourning the future we won't see is normal. Expected even. Stomp your feet. Get your neurologist to figure out a plan. Do what you can to have a brunch outing with friends even if you have to pay for it the next day in terms of energy. It is the best we can do, isn't it? Grab the joy where we can find it. And vent here when you can't find any.
*susan*
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Hi Ladies, hubby and I have been away and I don't really have time to address everyone. As some of you know, I started using RSO. Below is a post I made on another thread. But I can't believe how good my hands/feet and the rash are. Anyways, I'm going to stay off X for awhile. Been on it for over a year. What are your thoughts? I can't do both.
Well, I thought I had hit the end, or the beginning of the end. You all know I was doing the RSO, and then I have my FU pills. Sunday was supposed to be my last day before my break. Well, in the last week or so I have been losing my appetite. Thinking it's just cuz I'm at the end of my cycle. We go to Laughlin, I'm still not feeling well, but my hands and feet are looking way better, as well as the rash on my legs, arms, chest and back, like 80% better. On Friday my DH wanted to go and get a bite to eat, and I'm like I can't. I can't even fathom food in my mouth. So he got a foot long hot dog, wanted me to eat, so he cut off about 2", I couldn't even finish that. Then I start crying, he's crying, blah blah blah. So I'm trying to except the fact that this could be it. Anyways, we go to bed, both crying ourselves to sleep. Well he can't sleep, so he's up and on the computer searching to see what is wrong with me. What he found out was that the RSO was trying to fight off the FU pills, as they are synthetic. RSO is made from a natural source. So I quit my FU pills early, I think Thursday. My appetite started coming back with 24 hours. My rash is almost completely gone and my hands and feet are almost back to normal. Well, I am considering quitting my FU pills and just doing the RSO, and see what it does. I have spoke with my brother, my son and of course my husband, and they are on board with me quitting the FU pills for now.
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What are FU pills?
*susan*
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LOL, they are Madame X. Xeloda is considered Fluorouracil. It's really 5-FU, but I prefer just "FU".
Fluorouracil (5-FU) is a medication which is used in the treatment of cancer.
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Got it!!!! Thanks. And here I was calling it CAP, as a shortened version of capecitabine. FU has some interesting double meanings that might serve me well! ;-0
*susan*
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Becs,
Since I went off Xeloda & taxol and got my energy & appetite back; I'm attending some community concerts with family & friends. I just have to have a place to sit. I had bad peeling of skin on Xeloda and a friend of mine is putting coconut oil on her feet and does not have the skin problems. She's also doing well on it as I did not.
Hope you can find your balance. I know how depressed I was with all the Side effects.
Babs, I'm now on a daily probiotic. It helped. Thanks.
Terri
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I read this morning about another cream that might help hand foot syndrome. It's called Differin / adapalene, a topical retinoid. My wife is going to try it because she already had some on hand. Its prescription only I believe.
Here's the article that suggests it might work:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881915/
The patient had grade 3 hfs. Using clebatasol it took it down to grade 2. After 1 month on adapalene it went to grade 1, after 3 months on adapalene it went to grade 0. Sounds slow, but promising.
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Goldie what is RSO?
Timothy did she try the clebetasol and salysilic acid. It's helped a lot
Ibc glad the probiotic helped!!!
Babs
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Babs, no one would prescribe her clebetasol, so she didn't get a chance to try it. I don't know what luck she will have getting more Differin, but at least she has some she can try. Worst case scenario, if it works, maybe we can buy it mail order from Thailand or Indonesia and it makes it through customs. Clebetasol might be available though such devious means as well.
Goldie and Susan, just say FU to cancer!
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Babs, RSO, Rick Simpson Oil, or Phoenix Tears...Medical Marijauna MMJ
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Is the salicylic acid a powder you mix into the cream?
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Timothy, I read the research about Differin as well. I took Differin years ago for acne. People also use it for anti-aging. It is prescription only and insurance companies scrutinize the indication for the drug to make sure it isn't for anti-aging (which they won't cover). Please keep us to posted if it works and if insurance covers it.
Babs, I am still working on obtaining clobetasol and salicylic acid. I believe my MO will prescribe it but not without seeing me since he is researching the combo now/doesn't have experience with this combo. My next appointment isn't until August. I just changed from every 3 week appointments to every 6 weeks since my CBC blood work, tumor markers and liver panel are stabilized and the recent PET showed Xeloda is working. I hate waiting because my hands are so painful!
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JFL. I hope your MO prescribes it for you! It really helped my feet a lot. Hands are better but since they're always in use not as much improvement as my feet
Bab
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Becs it is ok to vent we all need a place where we do.
I'm 39 with kids and the thought of not see them grow up is unbearable. I try to stay strong. I used to pray a lot, I had a strong faith in God but I feel that I never get a break from cancer and rarely pray anymore. It is not that I don't be alive in God. I believe that my destiny is already written some where. My kids aren't biggest concern and I feel for them, they don't deserve a mother with cancer.
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Hi all, trying to catch up a bit on your posts. Becs & theziz my heart goes out to u both. Becs have u thought about going on disability. It was a difficult decision for me. I had been an RN working in hospitals for the past 30 yrs. My new oncologist gave me 2-6 yrs, & encouraged me to live as stress free as possible, & make best of years I have left. My children were 12 to 23 yrs old at time of dx. My #1 goal was to get to see youngest graduate HS, which he did this past May, yea!!! Theziz I feel as u about how this isn't fair to our loved ones to see us esp at our worst. But my faith teaches me they will be better people for having gone thru this.
On a positive note, I have been doing X , 7 days on 7 off. My MO started on lowest dose, slowly working up. I finished 5 cycle w/1500mg twice a day. No HFS, using Utter Cream. No major GI issues, taking probiotic. Bone pain is greatly reduced. Ca27-29 dropped 30 points so far. Feeling better that I have in a long time. Went white water rafting last month w/group of college friends. It was so much fun. Met up w/friends at beach yesterday, loved being in ocean. Meeting up w/more college friends this week-end for another beach trip. Did I mention my appetite has been great? Praying that this is right drug for me for many yrs to come. Su
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Ziz, we have a lot in common regarding age and kids issue. It feels like a cruel joke sometimes. The last year and a half have been the best and worst years of my life. I am so blessed to have a baby, considering I was first diagnosed with BC at 30 and most of the young women I met with BC at that time didn't have the opportunity to have children post dx due to early menopause or the like. But I feel so sick that my happy little baby will be motherless at some point as he is very connected to me. I feel like I will break his spirit. It is just not right. I was at peace with dying when I was single without children at 30, but the situation is more complicated now with a husband and baby. I am more worried about them than myself.
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becs. My heart go out to you. Hang in here. Is ssdi a possibility ? I can't even begin to imagine how I could work ft.
Well just finished my first week of X. So far so good. No se to complain about and actually think the nausea / vomiting is better not worse. Woohoo ! Keeping on keeping on.
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Thank you ladies for the good word.
Sometimes I have really bad days and sometimes good days.
Take care Xeloda ladies.
Ziz
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