All about Xeloda
Comments
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Couple questions
Does anyone have the summary that K-lo (RIP) mentions on page two of this thread?
Do the side effects improve?
Has this led affected your eyesight?
Thanks for the help. I'm so down right now
Mairee
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Maureen, I'm so sorry you're having a hard time with the Xeloda. Maybe it would be a good idea to talk to your onc about a dose adjustment.
I don't have problems with my eyesight on this (well, not worse than usual - I've had glasses since I'm 8) but my eyes are sometimes SO dry. A little while ago someone (sorry I don't remember who) said maybe the dry eyes were caused by the same thing that causes the HFS - leakage of the chemo through the capillary walls. I've been thinking about that and I don't think they're related. HFS is like a chemical burn - there is pain, burning, and sometimes even blistering. If that happened in our eyes it would probably lead to blindness - it would destroy the eye. I think the dry eyes are more likely to be related to other dryness issues some of us have with Xeloda, namely dry skin and mucous membranes. MJy skin is very dry on the Xeloda, as is the inside of my nose. My mouth tends to be dry, too.
Leah
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I am new to this thread. Just decided to start Xeloda today after having a pretty big progression. I've got a lot of reading to do to figure this out.
Sorry you are having a hard time Mairee. I know dosing and schedules can be adjusted so I'd be on the phone ASAP with MO to adjust so you start feeling better soon.
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Mairee, I am so sorry to hear about the SEs that you are suffering. Below is the link that K-Lo sent me when I started Xeloda a year ago. Hope it helps.
http://community.breastcancer.org/forum/8/topic/781957?page=1
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Maureen,It sounds like you need a dose reduction. Call your doctor's office and let them know what's happening. You should not be feeling so rotten on Xeloda.
I've been taking Xeloda for over one year. When I first started taking it I had such terrible hand/foot syndrome I could barely walk. I've had two dose reductions due to side effects and am now doing a lot better on the drug.
I just had a PET/CT scan yesterday and got results today. Xeloda is still working great against my multiple liver mets! I'm just delighted!
Hang in there with Xeloda, Maureen, but definitely let your doctor know you have to cut back on the dose. Xeloda works great at lower doses.
Kessala
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Maureen,
The nausea can tremendous. I benefited from daily Zofran. The only downside to the anti-emetics is that they can be constipating - which is great if Xeloda is giving you diarrhea. If not, you do have to be faithful with the stool softeners and senna. Maybe this is TMI: to stay regular on anti-emetics, I have to take 4 stool softeners, 4 senna, and chomp down on 6 fiber tablets at night. This is all with a diet full of whole grains and leafy greens.
Fingers crossed for you.
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Maureen,
This may be only a small comfort but I read an academic paper the other day that said there is a high correlation between getting HFS and experiencing a positive response to X. I suspect this is true for many treatments. Sometimes, a strong reaction to the drug manifests as strong side effects but also tumor reduction. You can also ask for your dosage to be reduced. Sounds like it may be too high for you.
I'm near the end of my second cycle too so we are on the same schedule!
Hugs, Susan
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Wow thanks ladies. If the correlation is correct I should be NED today LOL
seriously though what is your dosages? I'm on 3000 mg/day
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Hi Maureen,Doctor started me on 4,000 mg of Xeloda per day. By Day 10 I was suffering with horrid foot pain and could barely walk.
Doctor reduced me to 3,000 mg of Xeloda per day. I lasted until Day 11 and cried Uncle.
Doctor reduced my dose to 2,000 mg of Xeloda per day and that's what I'm taking to this day. Yes, I'm still having hand/foot syndrome which waxes and wanes a bit but is never gone and I have a lot of fatigue.
I'm on a 14/7 day schedule. I've been taking Xeloda since August, 2013. I'm 5' 5" and weigh 124 lbs. According to the manufacturer's chart I should be taking 4,000 mg per day. There's no way I could withstand that dosage.
2,000 mg of Xeloda per day has eliminated my multiple liver mets and as of my PET/CT scan done two days ago Xeloda is still working.
Overall, I'm extremely pleased! If people don't notice my obviously red and cruddy looking hands they have no clue I'm ill or taking chemotherapy.
Kessala
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Maureen--I started on 4,000 mg a day and my oncologist reduced my dosage slowly (by 500 mg every couple of cycles) until I got to my current dosage of 2500 mg a day which I seem to be tolerating well. Here's a link to an article about reduced dosages of xeloda still being effective: http://mbcn.org/images/uploads/DoseAdjustingCapeci....
At 3000 mg a day I was having a lot of trouble with peeling, sensitive feet and with stomach issues (upset stomach after eating, gas, loose stools/diarrhea). One thing I added to my routine after having all the stomach issues was a supplement in powder from called L-Glutamine. I originally took it when I did Adriamycin 3 years ago and never had any digestive tract issues so I asked my oncologist if I could try it again and she said I could. It really helped to stop the stomach upset and loose stools/diarrhea, and the gas to a lesser extent. I usually take a heaping teaspoon of it 2x a day mixed in a glass of water. One thing you have to work with is the right amount to take for your body. You don't want to overdo it because it can cause constipation. I take less at the beginning of my cycle when I generally don't have stomach issues and then increase it during my second week on Xeloda and my week off.
My oncologist's nurse practitioner said a lot of their patients take it to control their chemo related side effects. The only negative thing I've read is that in an experiment with mice, they thought it might actually make the cancer grow. The NP said that L-Glutamine is a protein so in that respect it might make a tumor grow but that could be true of any protein. If I remember what I read correctly, they've never seen this actually happen in the studies they've done with humans. Here's a link to an article on it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3385273/. You can also google "l-glutamine for chemo side effects" and a bunch of articles pop up. It might be worth trying. I order my L-Glutamine powder online from Amazon. I know it works for me because I decided to stop it on my off week and the symptoms came back but once I started again they went away so I'm sticking with it.
Hope you can find a solution soon because I think if you can figure out a way to control the side effects, Xeloda can be a great drug. I totally failed on Faslodex with progression to my liver after six months but on Xeloda I saw a significant reduction in my liver mets and a lot of healing in my bone mets after just 3 months. I'm hoping I can stay on it a long time. Hope you can too!
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thank you for the L glutamine information all the information provided by everyone today has been very helpful I do okay at the start of the cycle by the end of the cycle the vomiting is ridiculous I constipated and then all hell breaks loose today I slept on and off all day will talk to Onc on Monday im just glad this is week off
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Hope se of zeloda are low and the benefits high for all of us.
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I'm on 3000 mg/day, 14 days on/7 days off. I'm just over five feet tall and weigh 105 pounds. They rounded up to give me 3000 mg/day dosage. I'm also hoping this will work as I like that it's in pill form.
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I'm 5ft 3in tall and 150lb. 3000mg seems to be too high for me. I have scans at the end of December so we shall see. I agree with you Susan the pill form chemo is more convenient.
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Just posting my own update, in case it helps someone else on Xeloda...
I started Xeloda in September, 2014, after my last chemo (Vinorelbine) stopped working. So far, I love Xeloda and I'm not experiencing any outrageous side effects. Yes, I do get more sleepy than before... I find I can easily fall asleep in the middle of activities, and it is a struggle not to nap during the day sometimes. I've got some dryness and weird sensations in my hands and feet, but it is nothing compared to how awful I feel whenever my cancer is progressing, so I refuse to complain about the SE's
All in all, it is the easiest chemo I've ever done, and I am thrilled to be able to keep my hair for a while. It makes me feel more normal, and I don't get the "pity looks" from strangers, so I love that!
I'm also happy that my immune system isn't taking a beating with this one. Going into the winter season with a low immune system is scary, so I am happy that Xeloda doesn't significantly decrease my immunity.
Hoping that this one works for a LONG time, because I really like it!
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Kt, in hindsight, I would have suggested that you take a break before your holiday, so that your se's would be minimal, but never mind, I am sure that you are making the most of it. I overdo it too, sometimes, and the feet just keep on burning for such a long time afterwards, and I found that icy water or ice packs helped just a little bit.
Maureen813, I remember how bad my side effects were at first and I ended up in hospital, with the vomiting, constipation, and especially the diarrhea, I ended up passing a lot of blood in my stools. ( apparently I must have burst a blood vessel due to the constipation/diarrhea). Please keep an eye on things and discuss this with your onc, as they may then start reducing the dosage. Things do settle down gradually, especially with the nausea. Every cycle will be different too after a while. From what I have heard the 7 day on/ 7 day off cycle is the gentlest and still very effective. Try to perservere with Xeloda and wait until your dosage is properly adjusted, this may take a few months. Good luck, as this is still a gentle chemotherapy drug, and I really and truly hope that it will kick cancer's butt for you for a very long time.
Warm hugs
Mandy
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Starting Xeloda this week. I've read that I won't lose my hair, true? How much thinning are you experiencing? I have a vacation planned next month and a big party for my 50th right after that and hoping I'll still have hair! Also, any quick tips for getting through the first week? Thank you!!
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Hi Romansma,You heard right, no hair loss. No thinning for me either. I've been taking Xeloda for over a year.
You'll have a full head of hair for vacation and your b-day party. Enjoy!
Kessala
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my hair is growing back after taxol by leaps and bounds. enjoy your vacation and 50th birthday
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Romansma--I've been on Xeloda for almost 5 months. Haven't lost my hair and haven't noticed any thinning. As far as I know, hair loss and/or thinning is something you don't have to worry about on Xeloda.
You may not have any side effects at all the first week (I didn't) but if you do, I'd call your doctor immediately if they're bothersome. My oncologist told me that it's better to stop a cycle early than complete a cycle with bad side effects that delay the start of your next cycle. In the beginning it's all about finding the right dosage for your body and you need to work closely with your doctor to do that.
I had red swollen feet with a little peeling on Day 10 of my first cycle (at 4,000 mg a day) and my doctor stopped the medication and then restarted the next cycle at a reduced dose (3500 mg a day). My pattern has been that I did well the first cycle I took a reduced dosage but then on the next cycle at that same dosage I would have troublesome side effects again. I'm now down to 2500 mg a day and doing well on it for the last 3 cycles and don't think I'm going to have to reduce any further.
There is not supposed to be any correlation between having bad side effects and the effectiveness of the drug so you want to find a dosage that works well for you with manageable side effects that let you stay on it a long time. For me, I had to reduce the dosage to manage the hand/foot syndrome and the stomach issues.
The only other tip I can think of is to drink a lot of water--up to 10 to 12 glasses a day.
Hope it goes well for you!
Pat
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I appreciate the tips. I'm a bit anxious, but only time will tell.
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Romansma: No hair thinning. However, just a warning that I had tremendous diarrhea in the beginning. I am lucky as I am retired but did take two trips and really feared diarrhea. I did take Immodium which worked for a few days, but I was always making sure I was near a restroom. It seems I have diarrhea even after almost a year and can have it like 3 or 4 times a day. I made sure I had a seat at the back of a plane for instance and to this day hesitate doing anything where there are not restrooms nearby. Other than that side effects have been minimal. Best of luck as I think this is a chemo that is tolerable at least for me. My doctor this week said many take Xeloda by IV for different cancers, but every few years they run out of it so the patients have to take the pills and can't wait until they can have the IV again as the side effects are less. Interesting. I love taking the pills, but it gets old trying to remember to take them within 30 min. after you eat.
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Thanks for that Mandymoo. I think next holiday I will see if I can have a break first
It certainly limited the walking I can do but I know it's a relatively easy chemo compared to others so I can't really complain. Apart from sore feet & hands my eyes bother me & eye drops don't seem to help. Will talk to onc on Wednesday & see if anything can be done.
At least I don't have nausea or diarrhea. I think they would be harder to live with & I feel for any of you with those se's.
Keep on keeping on
kt
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Hi Ladies! I haven't been on here in awhile. November was a TOUGH month. I ended up in the hospital. But, I got through! I'm doing better now. I have to learn to better manage the side effects of the Xeloda/Taxol combo. It's not easy.
But....this is what I've learned:
Hydrate! I drink electrolyte water now. If you are dehydrated, water only won't work. This I know. You need the electrolytes.
Chapped lips: lanolin nipple cream (as in breast feeding aid) is better than anything else for the lips. Instant healing!
Eat. Even if it is one spoonful of baby food each hour, ya gotta eat.
Emu wool lined boots. My feet are peeling like a clementine. These boots are heaven. Along with the cream and uridine capsules mix.
I'm not even sure which side effects go with which chemo, but I hope that helps someone out there. I'll update the same info on the Taxol thread.
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Hi Skylotus, how long have you used the uridine cream for?
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So, I've had my onc appt today & am having my pamidronate infusion right now. My X dose has been reduced to 3300 from 4000 per day becos of se's.
But my tumour markers are still going up so I'm having a CT scan b4 my next appt. I'm hoping I can stay on X becos really the se's are tolerable. And becos I live 1 hour + away from onc I don't really want to start IV chemo unless it's not too often.
We shall see. I'm not going to stress, just one day at a time...
Hope you're all going ok
kt
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kt1966, Dang!!! I hope that you can stay on Xeloda too, so I will keep my fingers crossed. My dosage has been reduced from 40004000 mg per day to 2500 mg per day because of the side effects and it has still continued to work for me. I also live a long way from my oncologist and I understand that the long drive each time for chemotherapy infusion is going to be challenging. When is your next appointment?
Warm hugs
Mandy
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Hi Giovanni! I've been using that cream since I read about it in one of your posts a couple of months ago. I'm sure I thanked you for sharing that info. If I didn't....thank you! I bought the capsules and cream on Amazon. I probably use the cream about 2x a week. I don't have redness or swelling, just feet peeling. I just mix it as I use it, right in the lid.
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Mandymoo, my next appt is 3 weeks away & they're hoping that I can get in to be scanned before that.
It will be interesting to see how a reduced dose affects me. I'm looking forward to less se's but really want to stay on X.
Hope you're going ok
kt
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Thanks for letting me know Skylotus. I like to get feedback on how well uridine is working, and I want to see if it works as well as it does for my wife.
I've read a few entries in your blog; they are very well written, you have a gift.
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