All about Xeloda
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I started Xeloda in Sept 2016 two weeks on,one week off.In Jan 2017 ct scan of liver showed 50% decrease in 2 large tumours and one large hard to find. My tumour markers have continued to decrease except last one that went up a little. But my liver enzymes decreased and my counts have stayed stable as to H&H.Have a little HFS but use emu oil and no peeling or blistering. My appetite is iffy at times but comfort foods work.For some reason Italian food always tastes good. The hardest part is not being able to walk long distances-used to do 5-6 miles now I have a mobility scooter for distance. But hey I don't have an expiration date on my foot and I'm going to fight this0 -
Kickingcancersbutt,
good for you...I'm happy to hear Xeloda is working. It really seems to be a very good drug for quite a lot of people. Keep us posted on how you're doing.
Amy
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All the sudden my fingers are so stiff and my right thumb hurts. Is this Xeloda's fault? Or just a gluttonous Passover dinner?
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I'm noticing the same issues so I don't think it's Passover - we're having our Seder Wednesday. My husband gave me one task...ONE...to figure out which day for a Seder and I got it WRONG! Oh well, my family, who's Catholic, won't know the difference.
I've decided to take a couple of weeks off and without telling my Onc, stopped X yesterday. I may start again in a few weeks but I want to feel good again. I don't want to ache all over, have bouts of digestive issues, skin and mouth issues and especially the hand foot syndrome. While some would argue it's better to live with these side-effects than not live, and I understand that, but one has to take into consideration quality of life. So...I'm taking a break.
Amy
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Good for you, Amy. Sometimes we need to take a break.
I'll have to take a break while I have rads. Of course, we trade one set of side effects for another. Mr. Colon and Ms. Small Intestine are not looking forward to taking one for the team during 2 to 3 wks of rads.
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Amy, I know how you feel, quality of life is important. Actually, due to the hfs and the condition of my feet, my onc gave me an extra week off...yeah....no X during Easter. And then I will do 12 days instead of 14. Hopefully, the hfs will settle down.
To all, a very Blessed Easter!
Diane
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Hi I'm brand new to this group. Dx with TNBC in early 2013. This past January 2017 Dx TNBC with mets to brain, liver, and lung. Today is the last day of tx with X cycle 3 Have CT on Monday next with visit with MO on Thursday. Hoping to have X reduced as H/F syndrome is very uncomfortable soles of feet very red hands feel like baseball mitts thanks for letting me vent
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My early Easter gift...NO XELODA for the next two weeks! I am having radiation, starting tomorrow, and the RO said no way to Xeloda and rads concurrently. Poor Mr. Colon would just blow up!
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Cheryl, know how you feel. Walking is very uncomfortable and hands don't work properly....yuck.....but it could be worse.
Lita, no X for two weeks is a wonderful gift.....Mr. Colon is just going to have to get over it!
A very Blessed Easter to all....
Diane
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I have a question from another BCO member (LovesMaltese/Carol) who is not well enough to ask it herself at the moment. She would like to know if anyone here has brain mets, and if Xeloda is helping them. She started Xeloda shortly before brain mets were discovered. She's working on getting a second opinion due to a significant pain issue that her current team doesn't have under control. In the meantime, she's wondering if Xeloda can work on her newly discovered brain mets. Any input would be very appreciated! Deanna
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Deanna,
I also started on Xeloda just before my brain mets dx. I have LM (in the fluid) but I still understand that Xeloda is the best for brain mets for HER2- folks. It apparently can get through the "blood brain barrier." Again, I am new to this too and just learning the language.
There are some good boards on here. The most active site is brain mets sisters. Mara on there is very knowledgeable and helpful (reminds me of you!). Plus, I was told about the brainmetsbc.org site.
My best to Carol. It's just gotten real scary for me too.
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Deanna-
I was diagnosed with liver and brain mets in December 2012. I have been on Xeloda ever since. Initially, I was also on a targeted therapy (tykerb and then herceptin) but since March of 2016, I have only been on Xeloda. My brain has stayed clear of brain mets on my scans every 3 months. I have had no brain mets since they were treated in December of 2012. I believe that the Xeloda is helping me.
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Kaption and leftfoot, thank you answering my question. I read Carol what you wrote, and I think it eased her mind about staying on Xeloda at the moment. Since she hadn't previously had a brain MRI, they have no way of knowing if the spots are old, new, responding to Xeloda, or even how long they've been there.
I also wanted to share something my local onc told me today when I asked him about the drum-like heartbeat in my head that started around the time I started Xeloda -- something I think I'd asked about here as well. Thankfully, he knew exactly what I was talking about, although he said he hasn't heard it associated with Xeloda. But the cause can be anemia, of all things, and that thin people experience it more than others. I didn't ask for a scientific explanation b'cuz at that moment he didn't think my counts were anemic. But I just pulled up my on-line lab results, and my hemoglobin and hematocrit are actually borderline low -- the lowest they've been other than around the time I was re-dx'd. Anyway, just thought I'd share this in case anyone else experiences it. Deanna
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I just finished 15 sessions of radiation to multiple bone mets sites. My esophagus was in the line of fire and boy is it pissed! I'm having trouble with swallowing food and liquid. It doesn't matter how thin or thick, the spasms after anything goes through are awful. Has anyone else experienced this and if so for how long?
So, I started the Xeloda yesterday. Can any of you ladies give me an idea when to expect side effects to begin? Just curious as I'm hoping to travel for a few days later in May and again in June.
Much love to you all and thanks for being here!
SusanR
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SusanR,
I also had rads that made my esophagus angry. Seems like it was pretty bad for nearly a week. You're right, it hurt as much to swallow my own saliva as to eat something. Seemed to kind of go away suddenly.
I started Xeloda in February. I have had a tiny bit of peeling on my fingers and very little diarrhea. I think it really varies by person. So far, not bad at all. Just started another round today.
Good luck!
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SusanR i don't want to scare you on Xeloda but I too had rads almost at the same time as Xeloda and I got really bad hand and foot syndrome (go to the Xeloda thread to learn more) if I was u I would hold off the Xeloda until the esofagus healed
Aurora
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Good suggestion, Aurora. I did NOT take Xeloda while my esophagus was hurting! The Xeloda burns my mouth a little. I cannot think x on that esophagus would be a good idea.
The esophagus pain does not last long enough after rads are done to have to take x while in pan.
I have never had rads and x at the same time. I just had 2 weeks of x, then 2 weeks of rads (brain), 2 more weeks of x. Just finished my break week. I'm extremely fatigued and weak. We all expect I'll be feeling better by the end of this week. I hope!!
Of course, then I have my PET/CT on Thursday and brain MRI Friday. It's been quite a four month stretch.
Beautiful spring day today.
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I haven't had any rads to the area that hit my esophagus in over 2 weeks. While it is somewhat better, it's still making itself known with random spasms and difficulty eating. I felt like I was on the other side of this and then it hit me again. I was not on X for any of the time I was getting rads and had a 2 week break in between finishing up that area of rads and the first day I started X.
I had a 5 year stable run on Faslodex and then Ibrance failed me in just 4 months. I am longing for those days of stable when my life was at least on a "normal" rhythm. I tried finding some new normal when I started the Ibrance but the bone pain was the worst ever and now I know it was because it wasn't working and the mets were having a party. I am praying X will allow me some time of stable and then maybe a new normal that I can adjust to and live my life. I've been dealing with Stage IV for 8 years now, but most of those years were fairly do-able so maybe I'm spoiled but I want do-able back!!!
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Susan, it would be worth a call to your RO to let them know the esophagus pain returned. He/she may say that's normal. But, once mine was gone- it stayed away.
I understand your desires! I haven't had more than a one year run on anything yet. Ready to settle into X and have it work a nice long time. The new brain issue complicates all that though. I hate not being able to make plans! My poor DH is just trapped here with me. He loves to travel, and that has been drastically reduced for quite a while now.
Onward
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Susan R, I had rads to thoracic spine a year ago, but only 10 sessions of 300 greys each for a total of 3000. Do u know the strength of each session? I assume it's pretty standard to do 300, but who knows. I do remember my esophagus was pissed for a few weeks. My ro prescribed pepcid ac, but it didn't help. Only time will.
I'm having rads again to lumbar area, and it's Mr colon's turn to be pissed off. RO says I can go back on X once I'm done this week. Since I've been off X for 2 wks now, my fatigue is better.
Good luck, and let your ro know.
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Lita,
I've been wondering about Xeloda and fatigue. I feel like I've been hit by a freight train the past couple of weeks. But, as I look back on the last 4 months it's been lots of X and rads! Had a week off x last week- but was still exhausted. And the less you move, the weaker you get!
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Yes indeed, X causes fatigue. Even though it's oral, it's still chemo...essentially a POISON that's supposed to KILL cells. Our bodies get very tired trying to clear this crap from our systems, ergo the fatigue. The cancer itself is fatiguing, too.
Months b4 my dx, I noticed I was more tired than normal. I thought it was just "aging." Now I know better. The fatigue is VERY frustrating for me as I have to plan my entire day around it and limit the number of things I can do in a day. MO said fatigue can be worse on off weeks as the body is trying to clear X out...and then we start all over again.
I try not to think that I'll have to be on some form of chemo poison for the rest of my days. 😥
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Ladies, I'm trying to understand the purpose behind having X 30 minutes after a meal. I'm especially struggling because of this esophagus issue and eating anything is hard without worrying about when I'm taking X.
So, is the reasoning behind the "30 minutes after a meal" so that it is absorbed better, or is it so that it isn't hard on your stomach? If the absorption issue is the case, does it have to be a full meal or could it be a few cheese and crackers, or a hard boiled egg? I have never eaten in the morning in my entire life, but of course will do what is necessary for the X.
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My understanding is that the food helps X get in your system better. Someone on here said it needs to a be meal. Probably especially st breakfast when your stomach is empty. I was having trouble with the evening one. My MO said that could be a lighter meal.
Really, I suggest ask if you could wait for the esophagus to heal before taking x.
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I usually take my X as soon as I finish my last fork full. You don't want to wait more than 30 mins bcuz your stomach will start to empty. You need the food to help absorption and also protect against nausea.
Just eating a piece of fruit won't do it. Something with protein or a little fat helps. Cheese, eggs, PB sandwich, etc.
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Lita,
I try to view taking Xeloda like daily vitamins. It feels less depressing and more "normal". After all, vitamins are life-assisting or health-enhancing, so I try to focus on X as a positive.
I know the side-effects aren't positive but again, I try to focus on the alternative, which is not good, so my outlook is to try to stay focused on destroying cancer cells.
Amy
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Just saying hello and letting you know I have been reading for hours, last night and now. I will begin Xeloda in two weeks after rads to lymph nodes that are crushing two airways. Have been on Faslodex / Arimidex - stopped working. The Ibrance / Femara worked three moths or less. My onclogist referred me to trials or a different onc, I said no and what do you have. This was his first choice. He knows I was adverse to chemo but I never said never. And with the "improvement" of Xeloda (I guess improved since not a port now) then this is the best choice for me now.
Many suggestions and experiences are in my notes. The oregano oil capsules, the B6, Vicks Vapor Rub for hard HFS cases. The urea in the salves. Special socks and where to find them. That the lesser dose seems to be as effective as the greater end. And 7/7 helps the SEs when 14/7 is too much.
My oncologist is beginning me on the low dose at 14/7 and working up to what I tolerate. Dealing with a MTHFR issue so have to take folate and use detoxing supplements.
If anyone has answers to any of my questions, I would appreciate experiences and knowledge on these. THANK YOU!
QUESTION: Does anyone know about glutathione supplementation being used along with Xeloda?
QUESTION: Has anyone with chronic hypothyroiditis (Hashimoto's) needed to increase thyroid meds?
QUESTION: How many are on the Xeloda only until NED and then onto a preventative? I know it seems most are on for months or years until the Xeloda stops working. So which is the preference for us as patients? To have it in the back pocket for return? Or just stay on?
QUESTION: What is the preference for the companion - such as Faslodex, Ibrance, others?
Have added this to my favorites, so will watch and respond.
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thank you. MO reduced x by 500 mg seems to be working well. Feet are healing from the last cycle yes it could be much
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Bluebird:
The only question/comment I can add is the third one - although I achieved NED after four months, I continue to take it two on and one off at 3,000 mg/day.
After the first month of 4,000 mg/day my one reduced it to 3,000 which has helped my hands and feet immensely. They are still a little tender but not fiery red and peeling like they were before. I an hardly believe the improvement.
Good luck to you -
Amy
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Hello, everyone. I am starting Xeloda next week, or as soon as it gets here. I'm to be two weeks on, one off. 2500 mgs daily. With Ibrance and Letrozole I had some fatigue and lots of gastric issues. Hoping that will go away with Xeloda, although I'm not looking forward to the HFS. I'm very active and like to be outdoors. Anyway whatever the SEs,, fingers crossed it does the trick.
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