All about Xeloda
Comments
-
Goldie-I personally don't like Vegas at all. I hate to see people gambling! I know how hard my DH and I work for what we have and I rather buy something than gamble-- but that's just me!
Babs
0 -
hello ladies. Just getting back on the boards. I was no evidence of disease for 4 years and it all came rushing back. New tumors in chest wall and lymph nodes, not responsive to chemo. TONS of brain mets that I've done gamma knife twice. Hopefully round 2 does better than round 1. I'm starting Xeloda tomorrow. It seems like many of you have been on Xeloda for quite some time. Has it seemed to help control the disease? I know that nobody know the future, but I want to get as much more time with my 3 girls as possible!!! As I know everyone does
0 -
survivor- was put in Xeloda in December of 2012. Still on it. Had one solitary liver met that was surgically removed. Otherwise have been NED since. Xeloda has been partnered with either tykerb ( first 2.5 years) then herceptin for 9 months. Now on Xeloda only. So far so good. So I am counting my Xeloda blessings as it has been working for me.
0 -
leftfiitforward
That is wonderful news for you! Thank you for your info! I'm staying as positive as possible and am taking the summer off from work to focus and relax. Hopefully Xeloda will really put the kibosh on and I can go back eventually!!
0 -
Goldie, how did you learn about cannabis oil? I've never heard of it. Just looked it up and read about this guy who cured his cancer with it!?!? If it helps you sleep and cures cancer, I'm in!
http://reset.me/story/the-biochemist-who-cured-his-cancer-with-cannabis-oil/..
Just curious, does anybody take Reishi mushroom supplements or take the Apricot kernels?
0 -
Babs, we aren't huge gamblers, but we do play a little. Highest bet might be .50! It's the International Hardware show we are attending. So with the money we save, NOT gambling, we are going to Donnie and Marie show.
Survivor, I'm sorry you have to be here. I was NED for 6 years. Been on Madame X for a little over a year. It has been working for many of us. I'm not NED, but I'm still here. Praying you get many more years with your girls.
Nicci, I did the apricot kernels. NOTHING! You have to be careful with the cannabis oil, and be sure to only get so much THC if you are ER+. I've read that too much can cause the cancer to spread. So a bit scary as well.
0 -
Oh crap! I think I better stay away from the cannabis oil. I don't have the best luck. I am taking the Reishi supplements but have not tried the apricot kernels just because of the cyanide. I was too chicken.
0 -
Hi everyone. My name is tshilidzi. my mom is in stage iv and metastatic breast cancer. she is using xeloda for treatment. It is her second time and they have increase the dosage. my problem is that she does not sleep at all, she is always in pain crying. If it is not her shoulders it is her chest especially mouth/teeth. The gave her tramacet for pain. Please assist me with any painkiller pills that i can suggest to the doctor. When i told the doctor about the kind of pain she is feeling its like it is a game or something normal to him. The other time we where assisted by a female doctor, she changed the medication that we were given and my mom was so much better. But it is a huge problem when we find the male one cause whatever he gives to us my mom become worse. But we were advised not to choose between doctors as the both work together. Please assist.
0 -
how important is it to wait 30 minutes after eating to take Xeloda? Obviously, staying well hydrated is super important, so I'll take all the liquids. Just wondering if timing is super important or not. Same thing with separating doses. Wait 12 hours, or just breakfast and dinner. I'm in a crapload if steroids, so I eat ALL the time! Hahahah
0 -
You don't wait 30 minutes. You take before 30 minutes has elapsed. I take my pills immediately after finishing my last bite. I need a full 16oz of water to get my three pills down completely. I have my schedule at exactly 12 hours apart, but evidently, an hour more or less doesn't make a difference.
Ah yes. Steroids. Might as well just plop yourself down next to the fridge for the duration!!! :-)
*susan*
0 -
Survivor, yours is a common misconception as to how to take Xeloda. I believe the packaging says "take within 30 minutes of a meal". This confuses people into thinking they must WAIT 30 minutes before taking Xeloda.
My mother would literally set the oven timer to 30 minutes after finishing her meal and then take Xeloda. Yikes!
I take Xeloda right after I finish eating. And the 12 hour thing? Doesn't ever happen. My meals don't time out that way and I won't make myself crazy trying to separate my Xeloda doses by exactly twelve hours.
For instance it's now 12:30 in the afternoon. I overslept and just now ate breakfast/lunch and took my morning Xeloda. Will I wait until after midnight to take my evening Xeloda? No way. I'll probably eat supper around 7:00pm and take my Xeloda then. I've been told taking the two doses is more important than fretting over how far apart they're spread.
Kessala
0 -
thank you so much! Takes away some worry!
0 -
I am all prepared for the start of cycle 6 tomorrow morning. The pills are out of the shipping box and waiting for me at my 'place' in the dining room. A bagel is thawing on the counter. The smoked salmon is thawed as well. There is cream cheese ready to be opened in the AM. I have my rye sponge started so I can make more rye bread tomorrow. I will eat rye bread for my breakfast for the rest of the cycle or until I can't take having the same thing every morning any more.
I am disappointed and concerned that my feet and scalp have not improved at all during this healing break. This is the first break where I didn't feel substantially better towards the end. I see my Onc at the end of this cycle and will discuss with her [along with some scan results] then.
*susan*
0 -
Susan, what is happening with your scalp?
FWIW, I have had some cycles where I did not feel like I bounced back before the off-week ended-- but then the next cycle would be better. Two cycles back, I wallowed in bed the last two days, achy and tired and miserable. Then this last cycle, I went to six baseball games in 7 days to watch my son play, with no time for naps.
Who knows what causes what anymore!
0 -
I have a similar history ...mets to liver ...at six years
Have been on Xeloda since mets was diagnosed in 2013 May ...so it is three years this month...cycle 49
Tumor marker was nearly 3000 ...went as low as 22 but is creeping up now...35 last lab...
Side effects that are most troublesome include hand and feet red and peeling with pain , diarrhea moderate. It controlled , visual problems...can't wear my contacts...and most recently bouts of colitis ( abdominal pain with chills and anorexia)'
Recent cat scan showed large tumor still shrinking, several small tumors and a couple of new small ones and some new liver regeneration...
Next step is Ibrance /faslodex combination....as tumor marker rises...
I am getting tired of the struggle ....this next regime if it works is good for up to 24 months I hear....the test group was small..164 ...I read somewhere...
I bake bread using a sponge ...will bake tomorrow...made sponge today...what is the sinificance of rye bread here?
Landaffqueen1
0 -
lulubee,
My scalp is itchy and just plain hurts. When I have this side effect, I notice that I loose hair at the same time. Basically, I seem to have the hand/foot syndrome on my scalp as well. And it just feels weird.
Your recent adventures with your son are so exciting! To witness his "life goal" is so wonderful! I only say life goal with quotes since, at this age, a life goal is so immediate, isn't it?
For me, I am waiting for my first grandchild to come into the world. I will be responsible for this child two days a week from the day s/he is born so that my daughter can take a class that is required for her doctorate. This child will not care about my feet or my scalp. I hope that it will just love me, even with my thinning hair and aches and pains! I suspect that I will make this happen, the same way you made seeing your son play his games work.
*susan*
0 -
Have been on Xeloda for three years for liver mets with good results...for the feet peeling I wear gel socks at nite...by morning they look and feel normal...but dry out during the day.
I have small cuts in my fingertips which I cover with liquid bandage....hurts going on but seals and allows cut to heal faster....is waterproof
Toe nails ns fingernails are not NICE....
JUST STARTED MY 49 cycle....but tumor marker is starting to rise and there are several me small tumors in the liver
Am experiencing colitis now ( from Xeloda) like knives in my abdomen with chills and anorexia...
Landaffqueen1
0 -
Hey fellow X'ers. I have a question about fatigue-type symptoms. I don't feel what I would describe as fatigued, weak, low energy or easily exhausted on this drug but have become extremely sleepy, if that makes sense. Is this typical? I work full time and feel fine while there and exercise as much as before but have a difficult time getting out of bed, even with a full night's sleep, feel extremely drowsy when driving since I started this medication and feel like I could go to sleep while I am running (my body has energy to keep running, but my eyes just want to close while I continue running; it is odd!) Fortunately, my DH now lets me sleep in on the weekends while he takes care of the baby until I wake up. However, getting up for work is becoming hard. I am worried about the driving issue and am going to talk to my doctor about it on Friday and may try to get on Provigil. I didn't have this problem on my last treatment (Aromasin/Faslodex/Ibrance). No sleepiness there. Anyone particularly experience extreme sleepiness without fatigue/weakness/low energy/exhaustion? Does this improve? Do you take anything that helps - Provigil, Nuvigil, Wellbutrin, etc?
0 -
hi everyone! This will be my first summer on Xeloda and I want to know how the sun affects your skin on Xeloda. I live in Scotland where we don't get a lot of sun (lol!) but even in our moderate weather where I have not been sitting out, I already have large freckles on my face and I havemoderately fair skin. This is more than I normally have in the Spring. Going abroad on holiday soon to a warmer climate. I will probably buy a sun block to protect my skin but I thought that I would ask you all as a lot of you live in warmer climates to mine. How has the sun affected you and have you been badly sunburnt while on Xeloda?
0 -
I live in Seattle and when I get into the sun I burn and sometimes get a rash. So I wear sleeves and a hat. I hope you fair better than I do in the sun.
0 -
Definitely freckle more easily now. Had 110 spf on at a ballgame last week and still freckled a bit.
In other news, I had a good checkup this morning! Tumor markers still normal.
32 months so far!
0 -
Hooray lulu bee!!!!!!
0 -
Chemocare says that we should avoid sun exposure. I think that this is the general rule of thumb when on any chemo. I hardly have any pigment, the daughter of a red head, so I have avoided sun all of my life.
*susan*
0 -
The rationale for reduced sun exposure, is that chemo depresses your immune system, and in case of sunburn one would be more exposed to infection (and perhaps slower skin repair). Therefore, as long as one is careful not to burn, sun is OK.
0 -
Slower skin repair-- FOR REAL. I have had spots and dry, peely patches on my face that take 6 months to a year to totally heal-- and then often leave hyperpigmentation areas that last for another year or so. Just this afternoon I saw a new bump coming up on my jawline and thought, "Well great, maybe it will be gone by Christmas." Not even kidding.
I'm just now seeing some of the dark spots fade from my 2012 Afinitor rash!! That was awful. (ALSO: Afinitor "rash" my patootie-- it was more like acne.)
Skin care is a bona fide hobby on these drugs.
0 -
Thankseveryone. I'll definitely have the sun block on!
0 -
I believe it on the skin repair, 100%. The wrinkles around my eyes have gotten more noticeable in the months since I started Xeloda. Stinks, but it seems like it's the price we have to pay.
JFL, I am right there with you about sleepiness. I'm not feeling physically worn out, just sleepy. Like the other Xeloda things, it seems like it comes and goes, some cycles worse, some not a problem at all. This week, I'm really struggling with it! I'm having bloodwork tomorrow and I'm wondering if it might be anemia related, we'll see.
0 -
Wanted to share my good news.
TM's are continuing down-thank you madam X. CA15-3 was 70 last month and it's 46 this month. Normal is 36. January it was 248.
CEA also down from 18.1 to 12.7 Having issues with the SE's. My MO lowered my dosage from 3500 to 3000 this time. I hope this helps. My hands and feet are awful but I can deal since X is working
Babs
0 -
babs,
I was just thinking about you yesterday, wondering how you were doing! That is quite a dramatic drop. How exciting for you! My "normal" was, once upon a time, a 44. The 'normal' number isn't an absolute. I would be delighted with a 46.
I hope your new dosage level allows you to stay on Madame X for a good long time.
*susan*
0 -
yay Babs
0
