All about Xeloda
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thanks Goldie. My cousins mets are everywhere - confirmed in bones, bone marrow, deep chest; not confirmed but see spots/shadows in lung and liver; was in brain but gone now. For someone like her, with aggressive mets, I don’t know if we should wait for more mets to be shown in image or we should change medications now since both TMs are out of range and trending up. Of course we will consult her doctor next Tue, but I wanna hear some thoughts from you girls. What would you do? Appreciate your comments.
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Boo-that is awesome news. I guess the mo thinks I’m stable for now so I’ll take that. Scan did show less cancer in my abdomen. So that was a positive.
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My feet were a mess last week. My pcp prescribed this which is normally used for athletes feet and it is working really well. My feet have really cleared up. I have never had issues with my hands. Xeloda was my excuse for finally getting a dish washer lol.0 -
Thanks for sharing Goldie! I took 3 this morning and around 1pm, I started feeling light headed, then nauseous in the grocery store. Of course I forgot to throw some Zofran in my purse. I had the barf bags out on the drive home! I made it w/o having to use them. Now I am nibbling saltines and sipping ginger ale. I used my cbd oil when I got home, still nauseous! But less so. I'm assuming that the first week is the hardest???? Im so happy to hear about the people who have been on it a long time!
Claudia
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My wife just got through talking with her oncologist. Numerous new mets and uptake in SUV. It hasn't gone wild, but the Xeloda has stopped working. Next it's on to a port, which she's had before then infusions of epirubicin (whatever that is). Said three to five cemo options left after that, then perhaps a phased study. Dr. said she's responded well to chemo before and got 16 months out of Xeloda. Oh well, "Once more into the breach."
Mike W.
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I am so sorry Mike! I wish that I had some pearls of wisdom for you, but I don't. Know that you and your wife are in my thoughts and prayers.
Goldie, I guess I should not have brushed the pool down this morning. I did apply lots of sunscreen! I can't take warm showers in the summer here, it is too hot and muggy! I take lukewarm or cool showers. I may end up on two in the am also. My body hates medicine!!!
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my hands and feet were a royal mess, saw my derm last night and she knew about this madam x, she gave me a cream to use....clobetasol propionate, to be used twice a day, stay tuned for results! Hope it helps to clear things
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When I first started Xeloda I had a great appetite. After 8 months I have to force myself to eat. Has this happened to anyone else
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not yet! I do tend to only eat 2 meals on most days and sure not quite as hungry! Have not lost weight yet
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Kid, I'm very sorry for what your cousin is dealing with. It's hard to say what one should do, especially since we all react differently to treatments. Wish I had an answer for you. FOR ME, I do not want to do IV chemo again. And I want to squeeze every bit I can out of X. If I have to change, and next treatment fails, I would want to try X again. I guess you just have to trust your gut. Afterall, we won't be cured, just hoping to live longer. Which I think is happening, considering all of the new treatments. Perhaps most of us would not have lasted as long as we have.
Diana, I think I might ask for that cream. I had to laugh at you getting a dish washer because of your hands. I have a dish washer and never use it! Except for a drying rack! My appetite is fine, no problems at all.
Big, you took pills in the morning then again at 1 in the afternoon? What time in the morning? When I'm outside, which isn't for long as it's just too stinking hot. A tee shirt where sleeves come almost to my elbows, and shorts. I'm just not in the sun long. Another reason is that my eyes are so so sensitive to the sun, thank you Madame X!
Mike, I'm sorry X has quit working foryour wife. Hopefully she will get a long run out of her next treatment. At least she has great support from her husband. My husband seems to ignore my diagnosis. I guess because I feel so good. Good as normal actually. If I hadn't been told I had cancer again, I would not have known.
Proud, I have some Clobetisol, but only use it when the bottoms of my feet are itching like crazy. Maybe I'll give it a try twice a day. It's a very small tube, so will use it generously and with some coconut oil. I just don't think there is anything to get rid of it. It's caused by the chemo leaching through our hands and feet. And as long as we are on it, it's going to leach.
Proud, about a year ago I just started dropping weight for no reason. My eating habbits had not changed. I am 5'9 and weighed about 155. I got down to almost 130. Way too thin for me, it was actually scaring me. Then all of sudden, still no change in diet/eating, the weight started coming back on. I am currently holding steady at 145, which I like!
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Goldie, 108 at 6000 feet! Yuck!!! I always wondered if it was hot in the higher elevations there in the summer, now I know! Too hot for me! Of course, Florida is too hot for me in the summer too! We were supposed to go on a trip this summer with our horses camping out west! Then life happened! Stuck here for the summer! Oh well, s%#& happens!
I took my first dose at 8am, 1pm was when the nausea started. Cbd oil helped, but no appetite for dinner. Took second dose at 8pm. I brushed down the walls of our pool yesterday morning and this morning my hands sting, my feet also. Probably should not have walked on deck barefoot. What shooes do you wear outside? I can't stand closed shoes in this heat. I live in sandals when outside, barefoot inside. I have been applying cream with urea diligently. Any other suggestions?
Dianarose, staying the course is good!
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Hi Everyone,
Kid....sounds like things are moving quickly, so a change in treatment might make sense, but as Goldie has said, you and your cousin should make a decision you're comfortable with. It's all about balancing drug efficacy with side effects. There are a lot of new drugs that have been approved over the last few year. Hopefully the next one will be the one...with a long run.
Mike, sorry to hear about the progression. Hopefully next treatment will be a good one, with limited side effects.
Goldie, do you mind if I ask where your mets are?
I saw my MO yesterday, and we made the decision to stay on X for another 3 cycles. MO felt that this is a reasonable decision, given my recent profession has been fairly minor in two on my spots, with the rest stable. Although I don't love being scanned as often as I am, at least it tells me what's going on. Interestingly, my MO did comment that in North American, we tend to monitor the disease through scans, while in other countries, management/monitoring is by symptoms, like Goldie is doing. I am comfortable with the decision to give X a bit more time, and hopefully we can get things under control. NEAD would be great, but I'll take stable. As I mentioned, as far as drugs go, X is good for me from a side effect perspective. I feel totally normal. It allows me to work full time, and do all the things I did before my cancer diagnosis, which I am thankful for.
Again, I am sorry to hear about progression from a few of you, but hold on to the fact that more and more research is being done on MBC (I truly do believe this) with breakthroughs all the time. New drugs, immunotherapy, etc.
Wishing everyone a great weekend.
Anna
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Big, I have some plastic/rubber flip flops I wear, outside if I can. It helps keep the oil/lotion on my feet better, but being outside and the dirt, it sticks pretty easy on those oily feet. I also have a pair I wear in the house. I have no carpet and don't want to leave oily foot prints everywhere.
Miss M, not at all. Mets are to the bones, hips, spine and skull. My onc tells me this is my ship and I'm the captain!0 -
Goldie and missmonty, thanks for your responses! Really appreciated. We will make a decision after seeing her MO next Tue
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I noticed that I am loosing my hair more and more. Not like 10 years ago, but still, each time I brush my hair, its getting thinner.
Oh boy, I hate that.......
Any advice please.
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Mamita, I have not experienced any hair loss at all. Are you one any other treatment? I would mention it to your doctor. I was losing hair awhile back, but it wasn't from treatment, it was thyroid. So maybe have that checked as well?
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I am on cycle 8 of 2,000 a day and had hair loss until a month ago. I don't know if it was from my nasty clinical trial in January, but more likely was the start of Xeloda.
The loss has now stopped and new hair is growing in, TG.
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This is weird. I am so blessed of this site, of you Ladies. I researched a bit, and found out that the pain medication I am on
causes 95% hairloss. No doc, no nurse, no pharmacist told me. I had to find out myself. Its not like 10 years ago when I lost all my hair, its just
my brush after combing is really full. I am stopping this pain medication, and will blast my doc for not mentioning this high % of that medication.
And again, and again.......Lesson learned, ......You have to research on your own.
Have a wonderful week.
Carol
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Carol-what kind of pain med are you on?
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Dianarose -- I'm so glad that I am not the only one not hungry on Xeloda. I can't take Xeloda on an empty stomach, if I want to have a pleasant day or evening. So I was making myself eat when it is time to take my meds and finally it got to the point where I didn't want to take my medication since didn't want to eat at medication time. Then I started buying pre mixed protein shakes, went through them all Ensure then Boost, etc..but I like the Atkins drinks the best, even though it is made with soy. It was thick enough to coat my stomach and taste pretty good to me. It helped me take my pills and removed the dread of force eating for my meds.
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bewitching- I choke down half a banana in the morning to take mine. I am a bit hungry today but if eating wasn’t necessary I wouldn’t eat at all. Some how I managed to gain weight on Xeloda. Nine pounds! I think because I’m less active and getting older.
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Bewitching, VegaSport has some good protein shakes, all natural, organic and no soy. You can get it at some healthfood stores or online. I liked the berry one and tropical. They also have a chocolate and vanilla.
Denny, I may have asked before, but forgive me....what clinical trial are you on. I think I did ask you what treatment you were currently doing, but you are such an inspiration to all of us. I don't know of anyone that has been LIVING longer with stage IV, other than you.
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I'm just popping in to say that I have now been on Xeloda for a year, and TM is still low normal! I just decided, with my onc's blessing, to reduce from 2500 to 2000 per day, keeping the 14/7 cycle. I think that will be more sustainable as I hope to stay on X for a long time. I needed to reduce the fatigue a bit and make sure my hands and feet stay well. My onc is in favor of this because the side effects are cumulative and my TM is good. I'm also going to take an extra week off for a family vacation.
I have been having more trouble these days with losing things and forgetting things, and my onc says that does sound like chemo brain. Other cognitive abilities seem ok. I can think logically and I can remember choreography, but keeping track of an important paper or remembering my yoga class, not so much . Anyone else?
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Shetland-yes, definitely having issues with forgetting things-boiling water on stove, etc. At dinnertime when my family seems to bombard me with questions and requests, I can get totally muddled. I cam empathize with you!
My appetite is definitely decreased on Xeloda, but I am able to eat enough. Have been intentionally losing weight due to a new diagnosis of Type II diabetes. I think I have turned into a fruit bat, since it is what i enjoy most.
Best to each, MJH
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Shetland - great to hear that X is proving effective for you, one year in. Very encouraging.
I'll be a year in August, but last scan was a little bit mixed, with some minor progression Staying on X for three more cycles to see if we can some stability, and then will scan again end of August. Hopefully I'll be able to report one year of success too.
You were actually one of the first people who answered my questions when I asked about Xeloda vs. Taxol. Your advice was super helpful in my decision making process.
Thanks for that!Thanks for the update and here's to continued success for you.
Anna
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Goldie-Thanks! I was on Poziotinib in January, but only for 8 days since I had severe reactions. I keep checking my Poziotinib post to see if others have tried it, but no one has written so far. But it did put me into NED !
I do know that there were a few ladies also on the clinical trial at the Hillman Cancer Center in Pittsburgh, PA...which is 35 miles from me. No idea how they did on it....HIPAA rules.
I started on Xeloda Feb 23 with Herceptin.
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MJH, do you have any desire to sleep hanging upside down?
Yes, it's the little things that I need to do as I go about my day! Between the kitchen and the car, I can lose the keys I just found and forget the paper I just printed. I have tons of reminders in my phone to try and help.
MissMonty, I'm so happy I could help. You are almost to a year yourself! Hoping the August scan is stable or better.
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Xeloda can be a great drug. I have been on it for almost 6 years with only 3 months off. It has me stable again when combined with Tykerb do I’m hoping it gives me many more years.
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amazing the long times on xeloda, i am struggling with skin problems on my hands and feet, i am using tons of creams but still a problem. I wear cotton gloves at night and white socks at night, both on top of lots of creams, is it me or maybe i should stop the gloves and socks? I use bag balm and another goopie cream, can not remember as jar is upstairs now.
But, my numbers have been heading down the last 4 months so i need to figure it out!
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Shetland, congrats on a year with the Madame. Wishing you many more! Forgetting things, well I've been nick named "Scarecrow", ya know, the one that doesn't have a brain! And nothing wrong with taking an extra week off. I just did that, but it wasn't for vacation. Had to go to Michigan and try to sell some stuff out of my moms house.
MJH, I am not a diabetic, but I thought you were also supposed to limit fruit, due to the natural sugars in them? Good luck on the weight loss. There was a time during my treatment, that I would forget what I was talking about mid sentence. That hasn't happened in awhile tho. But I will go to say something, and if I'm interupted, then told to go ahead and say what I was going to say. Well, it's gone, I don't remember now. Or walk into a room to get something, and when I get there, I have forgotten what I was going to get or do!
Denny, on a drug for only 8 days and it put you NED??? WOW! Never have heard of that drug.
LFF, that is so awesome. Is the Tykerb for ER-/PR-, or the HER2. I'm totally opposite of you!
Proud, there is nothing that will get rid of the HFS, except going off the drug! The chemo leaches through the hands and feet. Lotions and such are only soothing for the moment. I find cotton socks and gloves just absorb the lotions. I have mentioned before wearing latex gloves after putting on the lotion/cream/oil and silicone socks at night for as long as I can stand them. Before I found the silicone socks, I put plastic bags on my feet and then socks.
I have labs the end of this week, but if they are up again, I will still remain on it for another cycle, since I took a 2 week break. My numbers are wavering in the 150's.
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