All about Xeloda
Comments
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Chichimaine -
I never experienced any HFS with Xeloda. I kept waiting for the other shoe to drop, and it never has in almost 2 years. I am unusual from what I read here, and from what my onc tells me, but it is possible! Also, it's worked very well for me, keeping my CA-27-29 at 11-14, not 1100-1400 but ...11-14 for nearly 2 years now. I am scared about when it will quit working...since I'm hitting 2 yrs. - but I try to not think about the day I have to switch. It'll come when it comes, and no amount of worrying about it will change anything, or better prepare me to accept that news. I figure I'll cross that bridge when I get to it.
LL
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LizLemon, wow! Congratulations. Can you please tell us more about your doses?
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Hi Leah,
Sorry, didn't catch the Israeli dermatologist's name. It did sound like she is returning to Israel though. I will ask the next time I see my dermatologist. Sorry I can't be more helpful!
Lisa
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Hello ladies, sadly Xeloda has not worked for me. I did six rounds and am finally doing well on it and unfortunately I've had progression in both my liver lesions and my lung lesions. So, I'm on to Halaven and wish you all the very best to beat these nasty tumors back. CLare
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I'm sorry you've had progression Clare, just when you were getting used to X
I hope Halaven does a number on your mets and treats you well
All the best
kt
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Well, ladies, I guess I am done with Xeloda. After 3 1/2 days on it, I had what appeared to be a heart attack. Very scary, ambulance to ER, heart catherization, three days in icu. I'm one of those that have the 5fu deficiency, apparently. So, no more Xeloda for me. It's on to Navelbine starting next week. I'm so happy for those of you that are having success with the Xeloda and wish you many more years of continued good results. I'd like to check back in once in a while to see how all of you are doing. Thanks for all your encouragement...maybe I'll still see many of you on the Liver Mets thread. May God bless you all and keep up the good fight!!!
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What a shame chichimaine- I hope navelbine is kinder to you!
A fellow kiwi on our forum also had a bad reaction to xeloda- she's on taxol now.
Really scary for you- hope you're feeling lots better.
Bless you too
kt
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I have just joined your group coming from an unsuccessful 2 months on Faslodex to Xeloda. Before that I was on weekly taxol for five months, so it has been one hectic summer. I have just completed one whole week of Xeloda today. I am having really bad nausea but otherwise so far it all looks bearable. I have been reading this thread, though not all of it.. it is so many pages and learnt that I should not spare on the anti nausea meds and that has helped a lot!
Looking to having some success with Xeloda.
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Welcome, Tigre55, I can relate to your time frame and treatment sequence, as I was dx stage 4 in April also. I was on Taxol weekly from April thru August, and have just started round two of Xeloda. I had the same experience with how vicious the nausea could be, and also heartburn. I am now religiously taking meds for each of those side effects when I take the Xeloda. I am super motivated to get this to work for me, as the next step would be back to the chemo lounge and starting AC. My hair is slowly coming back, my nails are improving, and the thought of losing those tiny triumphs is tough to take. Obviously, I will do what needs to be done, but I do whine a bit before I adapt to changes.
I hope you can be patient with getting your Xeloda routine worked out. Keep us posted, and I wish you the best.
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Thanks, kt1966! Doing lots better...back to work tomorrow and on to Navelbine on Monday. Thank God for the small victories!!
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Hello Tigre55,
My recommendation is to be proactive to minimize the hand foot syndrome (HFS) side effect. According to researchers it affects about half of Xeloda patients. If you want to know more, please read this article.
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Welcome, Tigre. I've been on Xeloda since November, 2013 with minimal HFS but my white counts are always low, so been on reduced dose for the past few months. I sip ginger tea throughout the day and nausea has not been a problem for me. Wishing you the best results.
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Hi Tigre,
I've just finished my 4th cycle of xeloda- initially I had nausea but not anymore
My biggest complaint is fatigue, just can't do as much as I used to. The HFS is not too bad, I use creams day & night & it seems to help (moo goo & udder cream)
just a bit of redness & burning feeling from time to time. I did have blisters & cracks but they cleared up reasonably quickly with me taking more care & not doing too much hard work.
Hope your se's settle soon too
kt
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hi ladies. I was wondering How long into your off week did you have nausea and fatigue?
I was doing 2 weeks on and 1 off but I stopped 5 days early due to severe SEs. Trying to determine if the nausea and fatigue I've been having the last couple of days is from the xeloda or from going off of decadron.
Isnt it terrible how all of the SEs and symptoms intermingle?!
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Hi DP,
I find that the week off I still have fatigue & tingly/burnt feet. I don't get nausea at all anymore.
So I think it takes more than a week to get out of your system.
I don't take decadron, so don't know about that.
So anyway that's my opinion, others may feel differently.
Hope you feel better soon
kt
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Chichimaine - I am shocked and saddened to hear of your heart attack! I don't even know what to say, except I'm so sorry you had to experience this. If I may ask, what were your symptoms? How did you know this was happening to you? So glad you are recovering, and hope that Navelbine is the right one for you.
Gciriani - I have been on 1000 mgs. in the a.m. and 1000 mg. p.m. 14 days on, 7 days off until last 2 cycles. Onc reduced it to 500 mg. a.m. and 1000 p.m. to see if that would help my sometimes overwhelming fatigue. The ritalin he gave me (finally) seems to help that as well. I take 20 mg of that each morning, and it helps me get through the day alert. However, when I 'exert' myself, like when I go to a mall or something, and walk around, I just want to pass out afterwards. I'm keeping an eye on my CA-27-29, and if starts creeping up, I'll pretty much demand to go back to 2000 mg a day. I also take an AI, and have significant pain as a side effect - I think that tires out my body too. It's very draining dealing with constant pain.
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Anyone have suggestions on how to minimize the red spots on your skin from Xeloda. They are on my neck, chest, back, arms and hands. I never go out in the sun without long sleeves and sunscreen on any exposed skin. They seem to come out and itch worse whenever I get warm. The shower makes them burn when the water hits them. Riding in the car for a long time makes my back break out more and all spots are more prevelant after a night under a light weight cover.
I try to hide my hands when in public because they have numerous bright red spots all over them. The MO only says that it is Xeloda rash.
It really is just a nuisance condition and a bit of vanity on my part. The H&F is much harder to deal with so I probably shouldn't be complaining. Kind of reminds me of putting lemon juice on freckles to try to get rid of them. It didn't work. Any how if someone found a way to prevent them or even make them fade, I would be happy to hear about it.
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We are looking for personal stories from our amazing members who are willing to share their experiences on being diagnosed with a recurrence or metastatic breast cancer, and would love some of them on the site by October 13, for MBC Awareness Day. What has helped you get through the initial shock, and make treatment decisions that feel right for you? What are some of your special and challenging moments, and strengths that could help to guide others. What has helped you when you feel anxious, uncertain, or overwhelmed? How has your diagnosis affected therelationships in your life? What words of inspiration would you offer others who are going through this journey, or have just been diagnosed with a recurrence or metastatic breast cancer? Please also provide your age, country where you live, and a high-quality image of you or something that represents you. We'll have a section of your stories in this section: http://www.breastcancer.org/community/acknowledgi..
Thank you so much for sharing.
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crone, I had really bad rash and then burned the tops of my hands by being in the sun for 10 minutes. I tried everything on it and it just burned. Then I got the okeefes working hands yesterday. It took the heat out of the burns overnight and it is starting to heal already. It is an amazing product so far for me anyway.
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LizLemon,
I had only been on Xeloda for three and a half days when I suddenly started to just feel generally un-well. I felt a bit dizzy and achey. Shortly after that, I had what seemed like a "head rush" that traveled down my arms. I then felt a huge pressure in my chest and felt my heart start to race. I use oxygen at night for emphysema, so my husband got my oxygen and put my pulse oximeter on. My heart rate started at 125 and quickly went to 155! It was one of the scariest thing ever to happen to me. We called 911 and they were there within 10 minutes and told me I was having a heart attack! After all was said and done, what was happening was that the coronary arteries were spasming...closing and cutting off blood and oxygen to the heart. This is an unfortunate side effect for a relatively low number of patients. It happened twice more the next day so they gave me calcium channel blocker and I have not had any more episodes since. The docs feel that now that the Xeloda is completely out of my system this will not happen anymore. Thank God!!! Hope all is well with you and blessings and my best wishes to all of you!!
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Chichimaine, how very scary for you! I hope all will be well and your new tx will work for you.
Let me tell you, the last few days of the second week pack a wallop! The first week the fatigue was getting to me but I didn't feel too bad, But the second week - oh my. Just feeling weaker and more and more tired, and the HFS increased a lot. I also just feel generally ill, though not nauseous.
Today was Yom Kippur, the Day of Atonement. It is a day of fasting, prayer, and repentance and we are in synagogue most of the day. I am not allowed to fast - I have to drink but I'm OK not eating. I wasn't able to stay in the synagogue most of the day - I needed to lie down, and I also slept a lot. A lot of the time we are standing, especially during the last service (I had returned for that). I wasn't able to stand for most of it this year. I was too weak and I found that standing for too long made my feet burn. It made me realize how much in my life has changed. I used to stand for the entire last service and didn't find it difficult. Not any more.
Leah
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Thank you for the warm welcome and the tips. Today is only my 9th day on X and I got out of bed and realised I could hardly stand on my feet. Overnight HFS attack! I had hoped that it would take at least the second round to start. I realised that I am on almost 4000 g a day. That is a lot, right? I think my oncologist wants to give the cancer a kick since my TM were like 2000 and maybe reduce the dose later.
MameMe, how incredible we follow the same time line. I have mets in the liver and bone. How about you?
gciriani, I have been putting cream on twice a day, but I can see I will need some more drastic steps. Thanks for the link, I will have a look
hansaim, Ginger tea sounds excellent, and with lemon! I have managed the nausea to some extent by taking anti sickness tablets two hours before I eat. but it means planning and knowing ahead when I think i might get hungry.
kt, I am sorry to hear about the fatigue. I am sensing the start of it, I find that I have to take a rest after just a bit of walking.. and it is only the first round!!
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Hi All
I am on my third cycle and am really feeling weird, weak and like my head is not connected to my body, is this normal? So far hand and feet OK but I am now needing a nap.
Any suggestions?
Thanks as my kids are worried and I am assuring them it is ok, I am also out of breath a lot whilst walking.
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Sammi, I haven't had quite what you describe but did have a random fall (1meter on to concrete) I think I must have fainted at the top of the steps, next thing I'm at the bottom on my bottom! No broken bones but scared me.
I looked up se's & dizziness & loss of balance is one.
As for the breathlessness do you have lung mets? (I do) Could it be tumour flare?
You might want to check with your onc.
I'm at the hospital waiting for my next pack of xeloda - cycle 5. They want me to start 6 weekly palmindronate infusions to strengthen my bones as L1/L2 have gotten worse despite other bone mets & nodes & lung mets shrinking.
Hope everyone is doing ok
kt
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I definitely have dizziness with the Xeloda. I have come close to fainting a few times and did for a few seconds once. Fortunately I can recognize when I'm about to faint so I get down on the floor FAST so even though I faint I don't get hurt. Not. Fun.
Leah
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@ Giovanni, thanks for the info and sharing. I bought capsules and open one up and mix it with the cream.
Thanks to whoever suggested Uggs. I don't own any and got a pair of Emus, and live in them. I have concrete floors, so you can imagine.
About the B's. When on Xeloda you are supposed to avoid folic acid, which is in most B vitamins/supplements. The way around that is to take them separately as B1,2,5,6&12, making sure folic acid is not one of the ingredients. Methylcobalamin for B12.
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Hi Xeloda ladies, I'm a little overwhelmed here. My CA started climbing from normal back in February. In March they found bone mets in spine and ribs so changed me from Femara to Tamoxifin. 3 months and CA climbing, pet CT showing progression so they changed me to Faslodex. Really hoped that would work. Nada...My CA went from 688 last month to over 1100 this month. I'm just astounded. So now after trying the first 2 treatments for 6 months we are starting Xeloda tomorrow. I read a few pages of your posts and it looks like fatigue and hand/foot problems seem to be the most common? Can I do anything to prepare for this?
Thanks for any help...
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Anyone have problems getting their Xeloda. My Rx usually arrives the Friday before my next round starts on Wednesday. Usually the pharmacy calls on Tuesday, asks questions such as have you been to the ER, has your dose been changed etc. then they say it will be approved by Medicare and they will call me to tell me the day it is to be shipped over- night. Well this month they called a week early, realized they were on the wrong week and called back the following Wed, saying they would let me know when it was approved. They finally called late Friday saying they would let me know when it is shipped on Monday ( today). No call so I finally called them, well they think it will be delivered tomorrow but I will need to sign for it. I have never had to sign before and as a matter of fact the Fed Ex delivery person nerver bothers to ring the door bell. My husband is having a heart catheterization tomorrow and I can't ( won't) stay home and not be with him. We just moved to. a different home and all the neighbors seem to work so no help there. I'm sure it will work out but who needs this stress about getting the medicine that you need . Just venting but wonder if anyone else had this problem.
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Hi Rosie,
Welcome to the Xeloda thread
I hope it does the job for you- all you can really do to prepare is get lots of good hand creams & remember to apply them +++ & to pace yourself so you don't get too tired.
You may not even have trouble with SE's - theres always that chance?!
Crone, here in NZ I pick up the X from the hospital every 3 weeks when I see my onc- so that's no help to you, don't know the US system...
Take care
kt
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leave a note on the door to leave the meds. Only if private house I would not trust apartment buildings people could be so cruel I had some one through out my meds once. I live in apartment complex. My super scooped it out from trash... Heartless animals that's all.
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