All about Xeloda
Comments
-
So sorry Sherry.
Diana-when I was on Kadcyla, I had the runny nose for the first few days after my tx. But the constant bleeding was worse.
Since Afrin on a Q tip to swab the inside of the nostrils helped with the bleeding, I wonder if it would help with the running?
I started my Xeloda today 2 and 2, and 14 days, 7 days off. Also getting Herceptin weekly.
The tumors pressing against my left lung has partially collapsed it, so I sure hope X works.
0 -
Nothing has helped me with the runny nose and eyes and sensitivity to the sun.
Sherry, sorry to hear about JFV. I hope she is comfortable.
Denny, I hope Madame X works on your lung issues. No collapsed lungs allowed
0 -
Sherry, so very sorry to hear this. Hoping for a peaceful transition
0 -
Dianarose, I thought my nose and eyes were running from my radiant heat in the house making my nose dry and continually running. I tried all the allergy meds then I tried NasoCourt. Sorry if I’m spelling it wrong. The pharmacist said it was safe so I’ve been using it and have had no more embarrassing runny nose. Give it a whirl, it may help you.
I have a question if someone could help me out. My recent Pet Scan showed no new areas of disease. My liver mets are improving but still have some light up areas in the bone that are active. I have four Docs working on this. I’ve been on Xeloda since last April. All my blood work perfectly normal but they are in a quandary as to why my TMs are slowly going up. Last one 135. My local MO is thinking of having me stay on Xeloda but adding fulvestrant (Faslodex) as an endocrine cancer med for the hormone activity. Has anyone else ever had this. I’m strongly ER+90 and Progestin+90. Her2- I’m waiting for my main MO at Dana Farber to get back and see what his recommendations are but wondered if anyone else has had cocktails like this.
Always something 🙄
Thanks for any info.
Hugs, Anita
0 -
Dianarose, I thought my nose and eyes were running from my radiant heat in the house making my nose dry and continually running. I tried all the allergy meds then I tried NasoCourt. Sorry if I’m spelling it wrong. The pharmacist said it was safe so I’ve been using it and have had no more embarrassing runny nose. Give it a whirl, it may help you.
I have a question if someone could help me out. My recent Pet Scan showed no new areas of disease. My liver mets are improving but still have some light up areas in the bone that are active. I have four Docs working on this. I’ve been on Xeloda since last April. All my blood work perfectly normal but they are in a quandary as to why my TMs are slowly going up. Last one 135. My local MO is thinking of having me stay on Xeloda but adding fulvestrant (Faslodex) as an endocrine cancer med for the hormone activity. Has anyone else ever had this. I’m strongly ER+90 and Progestin+90. Her2- I’m waiting for my main MO at Dana Farber to get back and see what his recommendations are but wondered if anyone else has had cocktails like this.
Always something 🙄
Thanks for any info.
Hugs, Anita
0 -
Have been doing a lot of reading as I haven't checked in for a long time...commenting on some old posts...Diana..my ONC sent me to a dermatologist for the HFS who prescribed a steroid cream I use 2-3 times daily...it has helped immensely! I also use thick moisturizer and Aloe Vera ...I take Naproxen when I overdo the walking (like around the mall yesterday!). I think NO1 asked about TM trends...I went from 600 to low 40's where it's hovered for over a year...Onc refers to 40's as my baseline
Scanxiety this week...wish me luck
0 -
Stilts- thanks for the information. Your tumor marker number is awesome! Keep it up girl!!
0 -
Good luck on the scan!
0 -
i have been missing in action for quite a while as I was on Xeloda from November 2012 to July 2016 and then due to progression I went onto Afinitor Aromasin combo. After almost 18 months on AA, I have progression again in both lungs, bones, abdominal cavity and above my colon. No mets in my liver, yay.
Today is day 1 back onto Xeloda... I am just wondering if anyone else has gone back onto Xeloda a long time after it stopped working? I have changed oncologists about 6 months ago as he is a lot closer to where I live. I pointed out to him that I had already been on Xeloda, but he was hoping it might be effective again. Option 2 will be Halavan.
I am hoping that someone will give me confirmation that this is normal protocol and that it can be effective.
Thank you.
0 -
Mandy, I'v had a good run on X, 3 years. Ibrance will be my next try. Last 2 labs TM's are creeping up. I too wondered about going back on something that had stopped working. None of it's fun, but I found X to be ok to deal with. I found Faslodex to be super easy, but it only worked for me for a short time. Fingers crossed for you that it will work again and you can get another 3 years with it! Please keep us updated.
0 -
thank you Goldie, I have calmed down a bit and I hope that Xeloda will do the trick again . Agreed it is a doable drug.
Good luck with Ibrance.
I will check back in a couple of weeks to see how my tumour markers are going.
A fortnight after that I will have scans anyway so hopefully I will have good news.
I might start another thread.... Xeloda the second time around haha.
hugs
0 -
I'm on Xeloda and Tykerb. I finish my third cycle of Xeloda tomorrow. I woke up this morning with itchy, burning hands. It's not so bad that it's stopped me from doing anything I wanted to do today, but it's definitely noticeable. I imagine it's the beginning of HFS.
A week from tomorrow is my first scan since starting Xeloda. If it's working, I suspect I'll be talking to my oncologist about a dose reduction or possibly a shift to a 7/7 schedule. Right now I take four pills (2000 mg) morning and night for two weeks and then have one week off.
Can those of you who have gone through a dose reduction or schedule change to address HFS side effects give me a sense of how quickly you saw improvement? Do you have any sense of whether the schedule change for the dose change is a preferred path? And last of all, can anyone point me to some documentation about the 7/7 schedule that might encourage my oncologist to consider it?
Many thanks,
Snowfall
0 -
I just started on Xeloda with Herceptin 12 days ago and am on a Facebook Xeloda site that has a lot of posts daily.
The 7/7 cycle is preferred to reduce the SE's.
0 -
Thanks for the insight, Denny. I'll start by proposing the schedule change to my onc.
0 -
snowfall- I am on my tenth cycle and have been using Eucerin advance repair cream. I have some peeling skin but nothing major. It’s 20.00 a jar but has worked so far. Got it at Walmart
0 -
Thanks for the suggestion, Dianarose. I've been using a mix of the Eucerin Advanced Repair, Gold Bond, Udderly Smooth with urea, and Bag Balm. I'm wondering if I overdid it with the urea! I left creams off last night and just what was the bag balm and my hands are feeling somewhat better today. I always have dry cracking skin during the winter, so maybe that's part of the problem too. It's so hard for me to tell the difference between side effects and normal life!
0 -
hi!! I just found this thread. I started Ixempra last week. I am supposed to be adding xeloda to this mix starting on my next cycle. (March 19th. ) I am very nervous. Every time I look up the 2 together, it doesn’t sound easy. I know if it will stop progression it will be worth it but that fear of the unknown gets me every time I start something new. Anyone else doing these 2 drugs combined? I just finished taking erubulin and it was one of my easiest chemos. I have been spoiled. Didn’t even lose my hair!! This HFS scares me.
0 -
Twirl- I was nervous about starting Xeloda too. It has been the easiest chemo for me so far. A runny nose 24/7 is my biggest side effect. I put a ton of lotion on my feet then my socks and I haven’t had any issues so far. My hands are always in hot water as I don’t have a dishwasher. I have made some hints to DH lately about that though. I hope you find madam X easy.
0 -
thank you Dianarose! It’s so unnerving;) I guess I will find out soon enough. Did you lose any hair
0 -
Hello....I’m new to this thread and will start Xeloda soon after Faslodex failed me. I am pretty sure I’m like several of you who need chemo drugs (hormonal drugs don’t seem to work for me) to battle this disease. I am hoping that I don’t have the side effects I hear about but am able to tolerate it well. If there is any advice you think I should hear before starting Xeloda, I’m all ears.
Looking forward to interacting online with all of you.
0 -
Welcome to those new to Xeloda. I have been on this drug since the beginning of September 2017, after getting progression after some success) on Ibrance/Anastrozole.
I was on a high dose to start (although right for my weight/height combination) of 10 pills a day. This was unbearable (big issues with my feet and nausea and stomach issues) , and I came down to 8 pills a day the next round. This seems to work well for a number of rounds, until my feet began getting too sore to walk on and so I came down to 7 pills.
I have had two scans since starting Xeloda. The first showed my two biggest spots reduce by 50% and 30%. The last scan had shrinkage - but didn't indicate how much. This gives me confidence this is a great drug for me. Though I would say the side effects are hard to deal with (physically and mentally) but I don't want to come down in dose to solve these issues for fear of not getting good scans.
For helping with side effects I would recommend.
1. Prevention of sore skin is much better than trying to heal. I think keeping my feet cool helps and have a cooling pad in my bed which I rest my feet at night. Its designed for pillows/hot heads/flushes but works really well for my feet its not expensive . It seems to get cool each day without the need of putting I the fridge (which I know I would forget). I got it from Amazon. (see link) I still have the classic redness and also my toenails and fingernails have been affected. I like to give them some TLC to keep 'stuff; building up under the nail.
2. I lotion my feet morning and night without fail. If I don't they become very tight - a bit like sunburn. My hands are a lt less sensitive nowadays but my feet still feel tender and I avoid walking too much (which is frustrating as I know I should exercise more) I use Udder cream ( the hand cream is great) and also Vanicream Skin Cream (as advised by someone on the tread)
3. I keep nausea at bay with Zofran (Ondansetron) Watch out as this can cause constipation - so I keep some laxative handy in case I feel an issue is brewing.
All I all its a drug that works for me and I would love this to continue for a long time. Perhaps if it has worked and really shrunk my spots - I can get the confidence to reduce the dose or try 7/7 says. I would say I am extremely miffed (speaking politely that is) it gives me such side-effects. Sometimes I find this hard to deal with - what other illness is the cure more painful (well for now) than the disease!!!
Best of luck everyone and I wish you zero or only slight side effects and also wonderful success with Madame X!
Big hugs.
Sarah
0 -
Snowfall, you're taking 4000mg of Xeloda a day? Ouch, ouch. That's a lot. I'm taking 2500 a day which is a little less than most women.
My hands and feet are starting to bother me. Not a lot, but I have to wear sneakers to work for a week out of every three. So I discussed with my onc. He says that there isn't a dose-response. And that my options are to (a) go to 2000mg 14/7, (b) go to 2500mg 7/7, (c) manage it. If feet and hands get bad on day 11, stop. Have an 11/7 or 11/8 cycle.
If you're taking 4000 (eight pills) a day, I'd go for a major dose reduction first. 3000 for certain.
I don't think there's a lot of research/evidence on dosing of Xeloda. Different cancer centers have different protocols, and the usual thinking is to manage the dose to the side-effects.
Good luck to all of you just starting the drug. You'll find it's not hard to take so long as you don't take too much of it.
0 -
This article is a couple of years old, but it discusses various dosing regimins and the success of 1000mg 2x daily.
http://www.gotoper.com/publications/ajho/2015/2015...
0 -
Thanks, Sarah and Pajim, for sharing your experiences. And thanks Husband11 for sharing the protocol document.
One of the things I'm struggling with is not knowing what are side effects from the meds and what are just life. I've been sleeping much more, but I often kind of hibernate in the winter. Is it the meds or just me? The same with some of the hand dryness. I've been dealing with diarrhea and think it is the combination of xeloda and tykerb, but I'm not sure. It seems worse on the second week of xeloda.
My hands were better today. I wonder if I was overdoing the urea creams. Can you have too much of it?
One thing that complicates the footcare is that I have plantar fasciitis. My podiatrist has me wearing very solid orthopedic shoes with rigid orthotics all day everyday. As in, anytime I'm not in bed. I've added some padding on top of the orthotics and that helps with comfort but increases heat. I've gotten a few blisters, but I'm blaming them on the footwear rather than HFS.
Today is my last day of this xeloda cycle. I'll find out a week from tomorrow whether it's helping. Dose adjustment won't be an issue if it's not as will be moving on to something new anyway. I just like to be prepared for all possibilities!
S
0 -
I feel my feet are better in shoes/trainers rather than loose. It was at night they got hot - especially as we had a matteress warmer. Crazy I know in Southern California but our heating system is not great (more geared towards air-con) and a warm toasty bed is lovely. I feel the pad helps cool my feet, particularly the heels at the end of the day. I have had blisters from Xelida - walking in heels and also walking barefoot into the garage and bashing my foot in a concrete step. I've been much better since I’ve been taking better care. Also - I feel better for some reason now the solid bits of dead skin has peeled off!
Btw, the side effects seem to continue during my week off and I can feel better in the first week of Xelida.
My blood teats (liver, kidneys, red/white etc) have been good a My tumour markers have never been useful. My bilirubin went up one time - maybe because I did a fasting blood draw. Its down a bit now and not really in ‘worry’ territory. My liver markers have come down and are good too.
Btw 2: I do get intermittent side pain whilst taking Xeloda. I used to worry but as I’ve had greatscans even with the pain I feel its the Cancer taking a knocking!
0 -
That's very encouraging to hear, Sarah. Thanks! I'm trying not to focus too much on the scan next week but my husband is not coping so well with the anxiety and some of it is overflowing to me, I think. I need to get busy with all the other life I have going on! That is, after all, why I'm trying to stay here for a while.
0 -
Denny, I'm an admin on the Xeloda FB page and just want to add to something you said above. While a 7/7 cycle is one option, you also need to keep in mind that the total amount of mgs we get per month is extremely important. Going to a 7/7 regimen significantly reduces the amount of X you get per month. I don't think there is research showing it's recommended or preferred or superior — just one option some are doing. A dose reduction may accomplishthe same thing while keeping total mgs significantly higher.
What I have personally done to combat HFS is dose reduce just the last 2 to 3 days of each cycle. That seems to work for me, while keeping total mgs higher than either of the other approaches.
0 -
The theoretical work around the 7/7 cycle is based on computerized simulations of cancer cell division cycles. The theory is that 7/7 with a higher dose will work better and give less side effects. That has not yet been tested in a clinical trial. My wife did 7/7 but instead with a fairly low dose, 1250 mg 2x daily and still got good results. She did however still suffer from significant side effects, and for that reason she switched to ibrance and letrozole.
There is good evidence that different women metabolize xeloda very differently, and that what amount is effective or toxic, is very individual. Some oncologists believe that the more efficiently you metabolize it into its active form, the more side effects will show up, and the effective dosage can be lowered. It varies with genetics and quite possibly with folate intake levels.
https://www.medscape.com/viewarticle/583704_3
In Europe, they don't mandate the addition of folates to flour and cereals. The European women can tolerate higher levels of xeloda. The initial work on setting dosage was done in Europe, and has since been officially revised and lowered for North Americans. The theory is that it is dietary differences, primarily folate intake. More folates = higher levels of the active metabolite of the drug, consequently equal effectiveness at lower dosages, and higher adverse side effects at the European dosage.
There is also speculation that basing the dosage off body surface area, based on weight and height, while being the approved method of calculating dosage, is incorrect in practice.
My wife's experience is that you need to lower the dosage if you are getting too many adverse side effects. If you are getting a lot of adverse side effects, you probably have more than enough to give this drug a proper chance to work, if its the right drug for your cancer. And more than enough probably does more harm than good.
0 -
Tonight I'll start Xeloda 3000 mg a day for 14 days. I've been on Taxotere since Sept 2017 and tumor markers have climbed for the past three months after initially decreasing . Now in the 600's. We will continue Taxotere. Has anyone added Xeloda to Taxotere or a similar chemo?
Lisa
0 -
intothewoods- wow! That sounds like a lot of chemo. Hope the combination works for you and your marker goes back down.
0
