All about Xeloda
Comments
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Denny, great info. I wasn't aware that the Natracure gel socks were available without the toes. Just ordered that version. Thanks!
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Thanks for the info so far ladies! I do have moisture socks for at night - on Lynne’s previous advice and they do help. I’ve always been a walker (30+ years as a PE teacher and outdoor person), so 3 miles really isn’t over the top for me (it’s a lovely reservoir flat circuit I always use as my rehab route when recovering from something as it can be shortened by a couple of bridges if need be). I was perfectly fine afterwards and on the following couple of days....however that day I was wearing Smartwool socks, which are expensive but brilliant. The socks I had on on the ‘burny feet’ day were just ordinary walking socks and would have had man made fibre which probably caused friction. They are in the bin now!
I agree that this dose seems high - I’d already pointed out to my team a couple of times that every drug I’ve had has had to be reduced or shortened (apart from Faslodex which just didn’t work), because my bloods couldn’t recover. My MO says this is a reduced dose....but my NP just hmmphed and said only a tiny bit! We’ll see how the bloods are on Wed and I’ve filled in an SE diary they gave me. Interestingly it is missing the itchy rash as an SE! It def is a reaction but as it’s slightly improved, hopefully not the mega allergic they warned me about!
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Hi Karen,
Rash aside (definitely needs to be flagged) I would actually say that dose is pretty much in line with what I was on when I was first put on Xeloda. The dosage is weight/height dependent so maximum dose will vary somewhat. I am now on a 25% reduced dose of 1300 mg twice a day, 14 on and 7 off as I had issues with HFS after four cycles at the time.
I suspect this is going to be a short run for me again. Liver pain definitely not improving and I’m feeling increasingly fatigued. We’ll see if my MO wants to wait it out or will shift me to something else as he indicated he would if the pain worsened. Sigh..
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Hi Karen. We are definitely all different. I started on 3500 a day (3 in the morning and 4 at night.) I had great results but reduced to 3000 because of HnF and gut issues. My PET at this dosage was also great (NEAD) but I still felt so poorly the last week on and half of the week off that we have just reduced me to 2500. After one cycle I feel so much better and my HnF is almost gone. I am hoping it is still working and I am a little anxious about it, but feeling good is worth it to me right now with other things going on. I have never had a rash with Madame X.
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Karen- it seems like a high dose, although I read early on that they use a higher dose in europe because they don’t have so much added B6 in their diets. Don’t know if that is true. I got HFS at 2500 mg per day after about 3 months on 14/7- decreased to 2000mg per day and it went away. ANC could not recover so I changed to 7/7 and doing well. I regularly take 4 mile walks. Sometimes 7 mile walks. I use Hoka1 shoes usually which are super padded. A study that Joyner posted from USC starts everyone on 2000 mg per day. I had to push my MO to get 7/7, but, other MOs put all their patients on 7/7- so - you may have to push a little if you need a change
I use aquaphor intermittently- sometimes with gloves and socks overnight.
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Hi Karen, I started at 3600 mg a day, 14/7 and developed hnf almost immediately. After the first cycle my onc dropped me to 3000 a day which was better but not great, I am now on 3000mg a day 7/7. I used to walk 5 miles a day and now after 9 months on xeloda I am lucky if I can get in 2 miles once in awhile (I actually went on a 5 mile hike a few weeks ago, big mistake now all my toe nails are dark purple. At least I don't need nail polish). My feet and hands are a mess but I am reluctant to get a dose reduction because this is working so far. My onc said she has not had a patient go past 15 months on this drug and I am hoping to break her record.
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Mls, I'm at 25 months. I can tell that my MO keeps expecting me to have to make a change, but so far, so good....
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EehHhmmm, both my MO and my NP told me separately that they have patients who have been on Xeloda for 5 years!!!
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Hi all - I am on 1000 twice a day - 14 on, 7 off. This is my "off" week. I am seeing my NP today about the rash... it seems to have gotten a little better but still some on my thighs, back and chest. UGh. Also HF was pretty bad toward the end of this last cycle. I am doing everything you lovely ladies have recommended so hopefully it will get better. I am an avid hiker and tennis player and I might die if I have to give those up! My onc did say I could switch to 7 on 7 off after this cancer is under control. My TM's have dropped pretty significantly - 143 to 94 in just 10 days, so hopefully I am not having an allergic reaction and can continue. I also started taking Ritalin to deal with the fatigue, and they thought it could be that. I've stopped for the time being. Best of all, my breathing is FINALLY better. I am off oxygen all day - only on at night, and I am trying to increase the number of things I do so that I can build my strength back up.
I love this thread - thank you for sharing so much good information! Karen, good luck with your rash! Keep us posted... mine is SO itchy but I am trying not to use anything until they look at it today.
XO
Andi
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Yaay Andi to the breathing being better! Bet you’re just realising just how bad it has been only when it starts to improve a bit - at least that’s how I am. Much better myself too although it’s going to take a while to fully recover.
Also, like you, I am trying hard to keep my team on message that if I can’t live an active lifestyle for as long as possible then my life isn’t actually worth living.....all a bit dramatic but they need to understand that some of us are happy with a sedentary life and some of us are just not!
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Wee update today. Bone scan showed ‘uptake’ on my sternum and 2 ribs in addition to 1 vertebrae on CT. No idea of size. Bisphosphonates are next once my dentist signs off - he’s aware so that should be OK.... but not if I need any teeth out it seems! I’m told this set of drugs should be OK SE wise but not confident of that.
All the side effects from the first cycle Xeloda i.e. HFS, rash on face/ chest and the big D which was worse on week off seemed to be expected by my NP. So next cycle dose will be reduced by 300mg a day, small but better than nothing. A better anti- histamine than the cetirazine I took myself to try and help the rash and a plethora of creams including a 10% urea for when the feet are bad.
Clearly I need to find the balance some of you have between tolerable SEs and the drug hopefully working.
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Karen, I’m sorry to hear you dealing with so much going on right now. It took me a couple of cycles to find the right meds and balance for SE’s too. Hopefully, things ease up, sending a hug.
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Hello: I am new to this blog. I was on Taxotere for 5 treatments but started having severe side effects. Was taken off the chemo and am scheduled to start Xeloda next week. (Diagnosed with metastatic breast cancer in September 2013). Looking for advise from those of you on that medication. I am nervous about making such a major change but the chemo became too much for me. I have not talked with the oncologist (will try and call tomorrow). Our clinic is in such a mess - the oncologist who was there for 24 years was fired and now they have "substitute - temporary" doctors and/or nurse practitioners. Rarely see the same person twice. Was prescribed the Xeloda - only found out when I looked at the patient portal and noticed the new medication. I did get a call from CVS specialty pharmacy regarding delivery and she went over the side effects. That's the only information I have been given about the medication. (PS: thinking about changing clinics). Thanks
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Wandering, Wow! I would definitely look for a different clinic if possible...As for the Xeloda, the best advice I can share is that you scroll back through and read some of the questions and responses. We all react differently, but you should definitely look for Hand n Foot syndrome and call your clinic ASAP if it is severe. Most of us use a cream at night. My onc recommended one with urea in it. I use a 20% when needed and found a stronger one was too strong. I also use Aquaphor at night with socks. It helps keep the feet moisturized and cool. Some use gel socks and some even use it on their hands and wear gloves at night but I can't. I moisturize throughout the day instead with Eucerin. What dosage are you on? I have been gradually reduced to 2500 mg, 2 pills in the am and 3 in the pm, and tolerate it ok. I am also on 2 weeks on and 1 week off, but some on this site are on 7 days on and 7 days off with good results. There are other SEs. Just ask once you start and someone here will chime in. I was dxd stage IV in 2016. I had good results on Ibrance for four years until I progressed, but after 3 months on Xeloda I am now NEAD. I am sure others will answer your post with perhaps different recommendations. As I said, we are all different, but we are here for you. Chris
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Hugs appreciated Mae, as is the advice and stories of others’ experiences- IntoLight! It is SO helpful to know that many of us seem to have issues in the first couple of cycles and once the balance struck seem to be much better.
Wandering, welcome here, seen you on the Ibrance thread. Let’s hope Madame X is good to you but your team seems to have fallen apart and you really need a good set of clinicians around you for this as listening to your needs is pretty vital I’ve found. Thinking of you.
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Gang: My new pills are scheduled to be delivered tomorrow. I'm going to call the clinic today and see if I can talk to an oncologist. Depending on that conversation I may wait until after my appointment next Monday to start the pills. I have a friend who is a nurse at the hospital north of me and I've asked her for a recommendation for an oncologist there. I may try and get an appointment and find out what they have to say.
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Hi Wandering.
In terms of changing treatment, Xeloda has been pretty tolerable for me. I was on it for four cycles in late 2017 and had few problems other than developing some hand and foot syndrome effects after cycle four. I would just recommend being very religious about applying Udder Cream or a similar product. I'm on cycle 2 of my latest change to chemo (at a lower dose) and am starting to feel some sensitivity of my finger tips and feet. The tricky bit for me is that I have a dog so walking is a must. Can't wait for warmer, dryer weather so that I can shed the clunky hiking boots. I don't think they help.
In terms of side effects, the one thing I am noticing is that I tire pretty easily. Have others experienced much fatigue on this treatment? I can't make up my mind if it's the Xeloda or the liver mets that are zapping me.
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Looks like the Xeloda dosage is 3 tablets (500 mg each), twice a day. What do you think?
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That's a typical place to start. I'm on a reduced dose as I had HFS the first go round and take 1300 mg twice a day. It's dependent on your height/weight as the dosage is per cubic meter.
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Sadie - I have definitely noticed an increase in fatigue on X. I am now on Cycle 3 and it's getting better..... but I still get really tired in the afternoon.
Karen - I feel exactly like you do re: QOL and wanting to do more instead of less! So sorry you are having problems getting adjusted. Cycle 3 is so far way better for me. Minimal HF, no D. rash is better but i think it's because I am taking Claritin 1x per day. my TM's are dropping, but i haven't had a scan in a long time, so not sure what is really happening. I just sent a message to my oncologist to request a scan, and the NP that I really don't like wrote back instead and said they dont' like to scan until Cycle 5 because that's when you can really tell what is happening. Has anyone else heard that?
Welcome Wandering! IT does sound like you need a new clinic! I have always found that I learn way more on these threads from these amazing women than I do from my oncologist/NP's!
XO
Andi
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Um no Andi. I scanned after three cycles when I was on it before and that will be the process again this time. My MO was pretty adamant that we would stop X if there was any worsening of pain and I know he wants to make sure we don't stay on this treatment long if it's not working. (It was a bit iffy before.) So, we scan after three cycles and then decide what to do. Really hoping the liver mets are less...
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Andi, I think scanning depends on your insurance and your onc. Mine scans every three months. She will stretch it longer if I have positive consistent scans, but that was only twice in the last five years.
Sadie, I started on 3500 mg but reduced to 3000 because of SEs. I am now on 2500 and have found it to be a good balance with minimal hand n foot and stomach issues. I too care a lot about QOL so I requested the reduction this time. Anyone else have stomach pains? I have not been scanned since my last reduction. And yes, the fatigue is real, but I am used to it from when I was on Ibrance. My fatigue has improved some since then.
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Andi, good to hear cycle 3 is treating you better. My MO said they'll scan at 3 months so that's 4 cycles. Isn't it awful if you have an NP you don't like? Mine is quite a character and I'm sure some patients won't like her manner, fortunately I do!
Wandering, bearing in mind dosages are height/ weight dependent, I started on 1800mg twice per day, that was too much SE wise so we've dropped to1500mg twiceday on my 2nd cycle (14/7). Only 4 days into cycle 2 just now and found SEs were worse at the end of the 14 and into the week off. My NP says if I struggle to stop taking the pills a couple of days early. We'll see how it goes!
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Thanks for the reply. I will keep the dosage perimeters in mind. (I am 5 feet 1.25 inches and weigh 130lbs.) I'm 76 years of age so the dosage may be a bit strong for me. I am taking lots of other medications in addition to the Xeloda so we will see what happens. I am going to start taking them tomorrow. Wish me luck. Always nervous starting something new.
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PS: I met with my neighbor today, who is a nurse (studying to be a nurse practitioner). She works at the hospital I would need to use if I change cancer clinics. I got the names of several oncologists there and plan on checking them out (consultation?). I realize the clinic I have been using is in disarray with revolving doctors/np's, but that should not be an excuse that no one contacted me about the change in medication, which I consider to be a pretty significant change. Anyway I appreciate the input from everyone.
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Wandering, I just PMed you. Thank goodness for the nurse neighbor... maybe she can provide input on the workings of the new clinic/hospital. You surely don't need additional unnecessary stress!
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I called the cancer treatment center this morning. They have a great procedure set up - you call in, ask for the "phone nurse". The receptionist will get your file to the phone nurse along with your question. The phone nurse will review your question and talk with the oncologist and call you back with an answer. This usually happens within 1 to 2 hours of your original call. In 7 years I have never had this process fail me. I talked to her today and told her that the only way I knew about the new meds was online from the patient portal and a call from the pharmacy requesting my shipping address. She said that was "bass acquards" from how it's supposed to work. She told me to wait to start the new meds until I see the oncologist on Monday. That at least was an answer - start now or wait until next week.
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I met with a new oncologist today at my old cancer treatment center. I liked him. He will be there for a year which is a long term deal there. I'm going to wait and see how the new pills (Xeloda) affect me. Starting them today.
The instructions I got for Xeloda from the nurse was to take 3 (500 mg) in the morning and 3 pills 12 hours later. We normally eat breakfast around 9:30 so that would have me taking the nighttime pills at 9:30 at night.
Question: I was told to be sure and eat when taking the pills. That's not a problem for the morning pills but I would not usually eat at 9:30 at night. What would you suggest as food for the night pills? The nurse mentioned something about eating a couple crackers - is that enough? What else?
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Wandering, my NP said 10-12 hours between doses. I have breakfast at about 9am and dinner about 7pm and she said that was fine. I also struggle with taking the evening dose after food... it puts me off eating when I know I have to take the pills afterwards, so I now take them just before I eat, then they’re done and out of the way. She said that was also fine as long as I fill my stomach right away.
Still struggling with all the same SEs in cycle 2, including the itchy rash across my face, chest and now on the back of my hands. This with a 300mg per day drop in dosage, but I’m still taking 3,300mg per day...2 more days to go on this cycle. My NP wasn’t at all phased when she saw the rash, which had improved quite a bit by the time I saw her 6 days into the week off, but I had photos to show her. She said it’s pretty common although not listed on the SE diary they gave me! They gave me a cream for that plus the HFS which do help a bit. Also prescribed a better antihistamine than the off the shelf one I’ve been taking, but I’ve just got that today, so we’ll see if it helps. I see my MO next Wed so we’ll see what she’s saying. We don’t know if this is working yet as they won’t scan until 3 months have passed, so I’m struggling with balancing managing these SEs and giving the drug a chance to work.
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wandering, sure crackers or a piece of fruit would work but I don’t think we need to be that strict on the timing of the pills. Of course check with your MO but I take my nightly pills after dinner, usually around 8pm. I eat breakfast around 10 am and 10 hours between doses hasn’t been an issue.
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