All about Xeloda
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Nancylm. I just started X yesterday. This morning diarrhea. Didn't expect that so fast, and I wasn't able to control it at first. Good morning, not. I'm taking a total of 3000 mg daily( six pills) daily. For two weeks and one week off. Sounds were on the same school, we can compare SE, etc. Good Luck.💞
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BRAT, my friends. Bananas, rice, applesauce, toast. You know the drill. I found my body adjusted after a while but in the beginning I had BRAT days. Also had plain sautéed chicken and real yogurt, not too sweet.
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Miao- Remember that Abemaciclib is stronger CDK4,6 inhibitor, you might try that one, and that these compounds should make immunotherapy work better on MBC, so is there is a way you could try Abemaciclib with Keytruda? Another option is immunotherapy with EP4 inhibitor combo, the trial kattysmith is on or Keytruda is supposedly opening one up testing the same combo on a variety of solid tumors..
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thank you Curious....I’ll bring up your suggestions when I meet with my MO in a few hours....
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Welcome, Nancy, and good morning, Cure-ious and all!
I'm on 3000 mg (3 500-mg tablets) 2x day, 7 days on and 7 days off (per Sloan Kettering recommended timing regimen). Since a cycle for me is a total of 14 days, I just finished cycle 6. Two things: my hand and foot syndrome (HFS) is gradually creeping up (and I was told it was cumulative), such that the palms of my hands and soles of my feet are tender and sore, and I am beginning to have a bit of blistering (dry) and peeling at my heels and finger tips. Palms are red. Tender to walk, especially when just standing or getting out of bed, but it improves as I move around, and then I forget about it. I met with my onc yesterday (regular meeting), and she described it as Grade 1 HFS.
I have not experienced diarrhea. This may or may not be because I include 1/2 cup of Fibre One cereal in my breakfast every morning, either with milk or yogurt, and fruit. In any case, I haven't had the problem. Some looseness occasionally (sorry for explicitness) but nothing hard to manage. May be worth a try for some of you. I have actually learned to like it!
Someone on this site recommended Honey House Naturals "Bee Bar Lotion". I use it every night on hands and feet, and it either is working, or I just haven't had big problems yet. It may also be worth trying. It comes in the form of a bar in a tin, and you rub it on. At first I thought it was odd, as not a "liquid (wrong word)" sort of product, but you learn how to use it with practice.
Good luck to those of you just starting out. Other than HFS, which has been tolerable to date, X has been very easy for me.
For those of you who know me from the Ibrance site...we're going to pick up the boat on the Eastern Shore on the 26th of this month and bring her down the Chesapeake Bay and home. Can't wait to get her out of winter storage! We changed her name over the winter from "Gangway" (from earlier owner) to Zingara II (our last boat was Zingara...an Italian word for a "female gypsy"). We'll head up to Lake Champlain sometime later this summer and a prowl in the northern waters. If we come past you, we'll give a yell!
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i just saw my MO, and since I'm not psychologically ready for infusion chemotherapy,—what he thinks I should be doing—he is recommending I join a new clinical trial that has gotten great response as far as BC is concerned. It deals with the suppression of a protein, open to various cancers, and with no side effects—something that he knows is very important to me, but is phase one.
Im supposed to meet the leaders to discuss details, meanwhile I'll be undergoing an MRI to assess my liver situation, since I have been feeling better than ever and the RO of the pet was unsure about the nature of what he saw. He's also put my name of the waiting list of a few trials that are currently full, including were the oral fulverstant is administered with other drugs.
So, till the ball gets rolling, I'll be increasing my holistic treatments by decreasing carbs, no matter how healthy, and increasing green juices.
The hitching around the elimination organs, he said, it's not due to Candida or parasites, but its a SE of Xeloda, which means it should clear soon.
Wishing all of you ladies a great ride on X, regardless of likely progression, it was like being on vacation for the first time since diagnosis
Joyner...wishing you and your husband great enjoyment of your boat. It’s in the seventies today in nyc and everything is blooming around my park bench
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Hi ladies! I start X tomorrow, 4000 mg daily, 7 days on, 7 days off. They said if side effects got too bad they could lower the dose. Sure hope it works, my cancer has exploded in my liver! He’s only going to give it two months, weekly blood work up, ct scan at end of month two then re-assess. I start tomorrow morning.
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Good luck, Gracie!
Miao, we'll come right through Manhattan on our way north. We'll be headed up the Hudson. We were there in September at Liberty Landing on the New Jersey side. Just opposite Manhattan. Great spot to tie up.
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whaoooo JoynerL....how exciting! If you decide to cross the river and visit Manhattan I would be so happy to meet you and your husband. I live on 5th ave, near Union Square Park. All you have to do is take the Path train and exit at 14 street, I would meet you there
We could have a delicious and healthy lunch at Basta Pasta, a great restaurant run by Japanese people with a penchant for authentic italian cuisine. It's one of those life mysteries....their dishes taste just like the ones I enjoyed growing up. I think they import the main ingredients
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Miao, that would be great fun! I'll let you know what our plans are as we get closer to departure time. I'm guessing it will be July when we head north.
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So do you all wear gloves to handle the pills? One of the other thread mentioned they had been told because its so toxic you can spread this drug around and your family can get some contamination
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Gracie, I do not wear gloves or take any particular precautions. So far, so good...
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That’s good to know Joyner, thanjs
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well, here I go!! First dose dowkn!
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I "handle" my pills in a little medicine cup that comes with the Emetrol that I take for nausea. Just in case there might be a problem.
My onc prescribed Ammonium Lactate and Clobetasol to be used alternately ever 3 hours or so for my feet through the day, and then my beloved Aquaphor at night with socks. But my feet got worse.
So now I am going to go back on only Aquaphor to see if they improve. I have raw areas along the sides of my feet, and the "toe-pit" cracks are worse.
I am only on 2,000 a day at one week on, one week off. But I have also been on chemo for 17 years, so I might be more vulnerable to SE's.
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Denny, I'm sorry about your foot stuggles! My feet were pretty awful the first 3 months on Xeloda, but are unexpectedly better over the last 6 weeks. So many variables have changed, that I'm not sure what is helping, but I wanted to share some possibilities.
My online pharmacy originally sent me the generic Xeloda manufactured by Cipla. I noticed that my recent generic refills have been Mylan brand. I read that different generics can have different rates of absorption due to the inactive ingredients. I don't know if one generic Xeloda brand is more effective or produces less side effects. My insurance requires me to go through their partner (Express Scripts) to get Xeloda, so I don't think I could specify a manufacturer even if I wanted to. Has anyone else noticed a difference between manufacturers?
Other things I tried/changed include: I started taking a B6 vitamin (oncologic dermatologist suggested). I use a prescription 40% urea cream at least once a day, then soak my feet a little, lightly sand them with a foot file, and apply Weleda Skin Food or Honey House Naturals Bee Bar. Many moisturizers recommended on this thread have worked well too. My recent refill of urea cream was Laserx brand which works significantly better than the first urea cream I was given. I cut back on the Clobetasol to once or twice a week, mostly because the dermatologist told me I could develop resistance to it. I ice my feet starting 30 minutes after I take my morning dose, and occasionally ice after my evening dose. I've given up walking/hiking for exercise and spend more time off my feet than I'd like, but am still able to do a cycle class most days. I cut back on folate-rich foods (e.g., lentils/beans) days I take Xeloda, since I read that folate can exacerbate hand/foot syndrome. Although I've also read that taking folate improves cancer survival. Ugh!
I'll be interested to learn whether cutting back or eliminating Clobetasol helps your feet. Clobetasol gives me instant relief when my feet are burning, but maybe it's better not to use it too much.
I hope your feet improve! Theresa
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I woke up this morning with bad pain in my right shoukder. Hurt like crazy! Ended up taking half a lortab. Do you think I should be concerned or wait a while and see if it works out? I have read that the liver can cause right shoulder pain? I'm on xeloda, just my third day at 4000 mg daily.
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Thanks Teresa! My X is by Accord, a generic company in the UK and Ireland. It is distributed by my specialty pharmacist for UPMC, my health care company.
I have been on X with Herceptin for 14 months and started with only Aquaphor yesterday. Honestly, already my feet feel better. But I started back on the pills this week, so maybe that is the reason? It seems to be cumulative since my feet weren't this bad after a few months. They were bad after my beginning first 2 weeks cycle, so my onc cut me back to one week on and one week off.
I asked the pharmacist about icing my feet after taking X and she said it wouldn't help since the pills do go through the system after 45 to 90 minutes, but basically in the bloodsteam.
I do take B6 and also Biotin. The Clobetasol really didn't help with my foot pain. I will definitely ask my onc about Urea cream.
I do very little walking and it helps that I sell on 4 internet sites, and that keeps me at my computer all day and off my feet.
Thanks so much for the information!
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Spent five hours in the ER. Unidentified right shoulder pain!!! Still hurts and now my neck on the front hurts like heck!!!
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Gracie, so the ER couldn’t help you? Do they not know what’s causing your pain? I hope you feel better soon! It’s horrible that you have to put up with this pain! I’m sorry that you are going through this.0
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Gracie, I'm so sorry about your shoulder pain. I've never heard that this sort of pain is related to Xeloda, though. Good luck!
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Gracie-have you had your liver functions tested? Problems in the liver can cause right shoulder pain.
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Gracie, I hope that your shoulder pain is not related to your liver! I'll pray that they find out what's going on soon.
Denny, I'm glad your feet are feeling a bit better! It's great that Xeloda+Herceptin has worked for 14 months! Lower concentration creams containing urea are available on Amazon without a prescription. Be careful to select one without parabens. I notice a big difference on days that I don't bother to use the urea cream. I do believe that icing helps too. It minimizes the amount of chemo that gets into your feet at least for the time that you're icing. Maybe the pharmacist is thinking that it's hard to pinpoint the time when the blood concentrations of chemo are the highest. I would try it and see if it helps you. Unlike many of our treatments, icing won't do any harm. Are you following the studies on DS8201A, a new treatment for HER2+ breast cancer? Here's a recent link:
https://www.astrazeneca.com/media-centre/press-rel...Best wishes! Theresa
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Completed 8 days of my first cycle and had to stop for a previously scheduled surgery that I’m having this week. Not cancer related. The nausea was horrendous! I followed the instructions exactly, took within 30 minutes of eating with a full glass of water. Lost 3 pounds in 8 days, not how I wanted to lose weight. Ate small amounts frequently, etc. Onc gave me a zofran patch that I will try when I restart on Saturday, it’s supposed to work for 1 week. Also extremely expensive, I’m told $500 per patch. Onc says she will provide samples for now. Does the nausea ever go away? Do some of you take oral nausea meds? Onc didn’t want to order “ pills” since it was another pill to choke down. Is this something that will pass as I get used to it? I tolerated Ibrance like a champ so was very surprised to have this much trouble. I do realize that they are very different meds though. Any insight appreciated. Feeling discouraged.0
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Lynwood - I had extreme nausea at first and received the tip from someone here to take it in the middle of the meal rather than 30 minutes after. Once I did that, I rarely dealt with any nausea.
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Nbnotes, thanks for the tip! Definitely will be trying that!!0
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Well everything is on hold. I’m in the hospital and they are trying to figure out what’s going on. Pain spread to both shoulders, neck and chest. EKG looks good at least
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Oh Gracie, so sorry to hear that you’re in the hospital! I hope that they can find the cause of your pain soon! Sounds scary but a good EKG is reassuring at least. I hope you get some pain relief soon!0
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Thank you all! They think the pain was referred pain although they don’t have the results of the mri in yet. Going home, thank goodness! I hate hospitals!!! Staying on the xeloda but onc. Will be talking to me about radiation to some spots. I’ve never had radiation even when I had cancer the first time so it makes me nervous! I appreciate all of your insight and caring
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