All about Xeloda
Comments
-
Have been pretty stable with mets for 10 years but no longer. I have cancer in the omental. As I have gone through most of the anti-hormonal stuff they are recommending I start xeloda. I have never taken any chemo drugs in all of my 20+ year history with b.c. and I am very nervous.
When I read the side effects especially the irritation of the hands and feet I have to admit to being, well terrified.
I have not told anyone about this, not even my own family. My MIL is dying of cancer at the moment and is truly a trial for my husband. His brother and sister are fighting everything and it is generally a dysfunctional mess. I feel like he is hanging on by his fingertips most days and I can't seem to tell him what is happening with me.
Never a dull moment it seems.
Angela
0 -
lazeechic -- welcome aboard the X train. Xeloda seems to have cumulative effects; for me at least, they built up gradually. Try not to be terrified. Maybe you'll be one of the lucky ones with minimal side effects. You never know! Hugs to you, with all your family is dealing with.
And a wee update from me -- it seems my time with Xeloda isn't quite over after all. PET scan yesterday shows... drum roll please... complete resolution of the liver mets! Bone and lymph node mets areas are all measurably smaller too. So, I start cycle #11 of X next week. My hands and feet are taking a beating, but I will embrace it and deal with it, as long as it keeps giving me these good results on the inside.
0 -
Hi all! My mom is just finishing up her second cycle and I thought I would share an update and hopefully some helpful tips based on her lack of side effects. Her supraclavicular lymph nodes which were enlarged can no longer be felt and the debilitating pain she has had for months now has almost resolved! She went from walking with a cane on the days that she was able to even get out of the house to being able to walk the mall and shop all day and do all of her housework without pain meds! She has only had 1 or 2 ibuprofen tablets in the last week! She doesn't have scans till after her 3rd or 4th cycle but it seems to be working. Even her anemia that the onc blamed on the significant bone met progression has resolved!
She has had no side effects and will be increasing her dose by one pill a day starting next cycle. Currently she is on 3 pills in the morning and 3 in the evening for a total of 3000mg per day.
She keeps her hands and feet lubed up by applying a few times a day and sleeping with her hands and feet slathered in lotion with cotton gloves and socks on that we got in the nail care section of Wal-Mart for just a couple dollars each. When she takes the pills she doesn't handle them with her hands at all and instead uses 2 little spoons to coat each pill in a little bit of marshmallow fluff so that the pills never actually come into direct contact with her skin or mouth. She drinks a lot of water before and after taking her pills and always takes them after a decent-sized meal even when she's not feeling hungry.
Hope that helps some of you have an easier time with Xeloda
0 -
Thanks Canadagirl, thanks kebab.
Your posts are helpful. I am very thin an can actually see the outline of this stuff on my stomach and it is creeping me out. I know I need to do something and this seems to be the only real choice I have. I guess I have been spoiled the last little while, no progression and manageable pain.
I am so glad to hear kebab that this has been working for you. Hope you had a big celebration!!!!!
Sounds like it has been very helpful for your Mom Canadagirl, you must be so pleased
You both have given me some courage, so I guess I will just have to put on my suck it up hat and get going!!!
Angela
0 -
great news, Kebab! So good to hear good news.
Angela, starting a new chemo is always scary for me, but Xeloda is very doable, plus I get to keep my hair! Found my 1st cycle very easy, so be of stout heart, here's to X kicking your cancer's butt!!
Started my 6th cycle on Saturday, have had some vomiting - sudden nausea & my stomach twists & whoops! Just comes out of the blue. Its happened in the middle of the night & early morning, on the last day on & first day off . So we've lowered my eve dose by 500mg, I'm on 1500 twice a day. By the end of my last cycle I didn't feel good at all, but on the 4th day off I start feeling better. The hfs seems to not heal on the week off & each cycle is worse, my hands feel like leather. That with the neuropathy back I'm so clumsy, & I can be clumsy at the best if times, but I'm dropping things all the time now. I tripped over something in the garden the other day & ripped the nail off my big toe, just for good measure!!
Big scan at the end of the month - abdomen, liver & chest, with contrast. But the good news is that my son arrives from Israel to visit on Saturday!! He'll be here just over 2 weeks, can't wait to grab him in a big bear hug!
We're going to celebrate my 60th birthday twice - once here where I live & then we'll do it all again with family in Johannesburg!
Life is good, most of the time, I just try to enjoy as much as I can each day. Like now I'm going to enjoy a bit of a read and a nap!
0 -
Got my scan results back and the X kept the older tumors in my liver from growing and some have even shrunk down, but there were also three subcentimeter tumors visible on the CT.
Since the tumor growth was so slight and I think X really packed a wallop overall, I was given the choice of either Halaven (a chemo) or Arimidex (an aromatase inhibitor). I chose the Arimidex since I no longer have ovaries and am really loving having hair at the moment. I hope it works for a while. The change couldn't have come at a better time as my fingertips are so mutilated. It's largely my own fault -- I'm a major dermatillomaniac and can sit and carve my hands and feet with a cuticle nipper literally for hours -- but I am also hoping I can regain some energy. I don't know how long the fatigue lingers and Ritalin isn't all it's cracked up to be.
BEST OF LUCK to all you X'ers!
)0 -
sorry to hear of the new tumors, DancingVeggie, but good the older mets are stable and some regression. I hope Arimidex will be an effective one for you. Totally understand about wanting to keep your hair! Good luck!!
0 -
I have a questions regarding zoloda. I am going on vacation which was well planed way before med switch. The week I am on vacation I will be on Zoloda. Has anyone taken vacation on this drug and how was it. Its not a vacation where I walk alot and sightsee its more of a beach vacation just to get away from all the medical problems.
0 -
stellaratovsky, I've travelled with my Xeloda and it was fine. Just made sure to rest when tired & it was very manageable.
I know I can call my oncology unit and speak to my onc or my chemo nurse if I have any problems. Take their contact numbers with you, just in case?
In fact I'm traveling to my sister soon & it'll be my week on again.
Hoping the break will do you good, Stella, soak up lots of that sea air!!
0 -
Thank you Thank you Carolben, I have traveled with all the other drugs and it was fine but I was not sure with Zoloda. I actually feel great right know thank god for that. I hope I continue to feel great. I am just concerned with all the side effects but I will make sure I dont over do anything and get plenty of rest. I hate this disease how you have to get premission to do anything with your own body.
0 -
I felt like my body betrayed me, after being so healthy & active. I didn't trust it anymore. I felt lopsided (still do at times) after my mastectomy. I still plan outings & don't know if my body will manage the activity, so I have to go with someone.
I have found that my spirit carries my body, it's not the other way round. I'm not a religious person, but since dx I've felt that light inside of me shining more brightly, I feel more intensely alive.
This horrible disease does bring gifts; one of mine is to see & know just how much I'm loved by many people, a totally goosebumps, humbling experience.
Glad you're feeling we'll, me too right now!!
0 -
I just started X on Monday and have noticed that I'm having trouble urinating. I feel like I have to pee all the time but when I sit down to go, I can't. I usually have to turn the water on to go. I have the urge to go, I need to go, but I just can't seem to relax those muscles enough to go. And a lot of times, once I finally start, I'll stop several times mid stream and have to go through the whole relaxation process again in order to finish. It doesn't hurt or burn at all. It's just like my muscles aren't working right. Anyone else have this problem? Sorry if TMI!
0 -
mkahle - Yes, it's the Xeloda. I'm on round 3 and I have the same problem. I get up 3 to 4 times a night. Go to the washroom and stand up and there it is again. I found it helps to strain a little and move side to side while sitting to get emptied.
P.S. In my opinion, there's no such thing as TMI on this board. We are here to help each other. Good Luck trying that routine.
Lots of love and healing energy,
Karen
0 -
Well, all, I haven't posted much, but I am leaving the Xeloda thread, as scans last week evidenced new tumors in chest and neck. FYI, the neck stuff has made me virtually lose my voice and makes swallowing food difficult. So, I'm off to the Taxol and Carboplatin land. My first chemo where I lose hair; I'm actually more distressed about that than anything else! If anyone has been on this treatment, please console me! I'm feeling a little overwhelmed.
0 -
Hi X ladies. I haven't posted for a while and like Dancingveggie and Rockinlife I have had progression in liver. I start Navelbine on Tuesday 18th. Really apprehensive as I have yet to hear of anyone having good results. My onc seems to think that it will suit me. Does anyone know of a thread on this site that addresses issues with Navelbine?. If so would love to hear from you. Good luck to all and thank you so much for the support you have given to me and others.
Regards and (huuuugs)
Helen
0 -
Sorry to hear about progression, ladies. I wish your next treatments are easy and effective.
My son got sick with a stomach bug after a field trip and he passed it on to me! You'd think that stage 4 BC should be exempted from anything else, but alas, my week off after cycle 6 was vomiting and diarrhea. The blood work was good with TM still down, but my cycle 7 is being pushed out by a week to give my body time to settle down. I think I am at the end of it and will be able to start X on Wed.
Kebab, way to go girl! Keep kicking the mets back.
0 -
It's been quiet here lately! Just wanted to share my good news - scan last week showed still stable!! So I've been dancing with the stable boy for about 3 months now! Love it. Onc says if there was no regression after the first 4 cycles, there probably won't be any, but stable is good for me and there's no visible spread either!
HFS is doing a number on my hands and feet - big cracks in heels and on finger tips and joints, which are painful, the fatigue is another thing, but on a lower dose my mouth is not so bad, just sensitive, not covered in sores! Also my BP is very low.
So we'll do another 4 cycles (am on cycle 7 now) and scan again. How we live from scan to scan.........
I'm so clumsy with my hands, usually drop everything at least once, can't open jars, unscrew caps, but seriously, if that's the worst se, I can live with it. Nausea comes and goes too, and I have no appetite. But I'm stable!!!!!!!!!!
0 -
That is good to hear Carolben. I have been told that I was stable in the fall. Hoping it stays that way but having a lot of pain in back, hips and legs. Hard to tell whether there is something else going on or whether it is this crappy cool damp winter weather. Bring on spring.
0 -
Congrats Carolben! Always great to hear good news. That HSF is a real bitch. I have a plethora of different lotions by my bedside, including urea cream which has to be prescribed. Are you taking B6? I also got a shot of B12 at the Onc's office which really seemed to help. Keep the stable boy by your side!
0 -
I was wondering if you all are on name brand Xeloda or the generic? My insurance company is now telling me that my copay for brand name is $425.00 for a two week cycle and generic is just $10.00. My first cycle was covered under the xeloda copay assistance but now I have to go through a different pharmacy, not sure why. I'm guessing its a no brainer and I get the generic but just wondering what you all take. Thanks!
0 -
I have been taking name brand but this last time I refilled I received the generic.
0 -
I received the generic version with this refill too. Apparently it just became available (that's what the pharmacy folks told me, anyway). As long as it works the same, I'm happy -- my copay dropped from $30/cycle to $10 per cycle with the generic!
I'm on cycle 12 and HFS is getting tougher to take. I was getting a respite from the pain/burning/thick feeling on my week off the drugs, but that has stopped now. It's 24/7 day after day after day. I think my most frustrating part is that my fingers are no longer able to handle the fine-motor/detail jobs. So the days when I only have enough energy to lie in bed and read, I get frustrated trying to turn the pages in my book!
I'm with Carolben though -- I can handle it as long as it keeps doing the good work on the inside!
0 -
Well, those were brave words from me just a few days ago. I called my onc today and I'm seeing her tomorrow to talk about making some changes. My hands and feet are just too sore and I am throwing in the towel. I can no longer make meals for my family because I can't open a jar, pick up a pot, or hold a knife. I'm okay to hobble around the house in thick socks, but I've been housebound the last 2 days because just the thought of putting on shoes makes me cry. I can't sleep because every time my hands or feet move on the bed, I wake in pain... Enough is enough.
We're going to talk about switching to a 7/7 cycle instead of 14/7. I'm hopeful that it will do the trick -- enough of the drug to continue the good results, but enough of a break to let my hands and feet heal. My onc suggested taking a complete break for a few weeks. I'm terrified to think about that. I think the mental stress of not being on any meds would be worse than the HFS! We'll see what she has to say tomorrow though.
0 -
Stage 3 toxicity in my hands and feet.
I'm off Xeloda for at least 2 weeks. I can restart once I can make a fist and open a jar. Going onto a 7/7 cycle. Fingers crossed that it works just as well! (... well they would be if I could cross them, of course...)0 -
My mom just started her 4th cycle and was switched from the 14/7 cycle to 14/14 at the first sign of redness on her hands and feet. Just in time too as she hadn't had any problems as far as pain until just yesterday when her feet felt like one big hot and painful blister after just 5 minutes walking at the mall.
0 -
Saskie, I do hope your aches and pains are just the cold and not anything sinister, your summer is just around the corner, lucky you, we're going into winter. I'm thin and feel the cold so badly, plus I drive a motor scooter, so when I go out in winter I wear about 7 layers of clothing. If I fell down I swear I'd bounce!
In_cognito, thanks for posting about generic Xeloda - I didn't know there was a generic. Will definitely speak to my onc about this when I see him next week. I wonder if it's available in South Africa yet, we seem to be behind in some areas!
Mompsych, I was getting vit B12 complex shots twice a week, but got to the point that I just didn't want more needles stuck in me, so I stopped. Will definately ask onc about B6 (and the 12's). I also have a box of different creams - not just for HFS - for mouth ulcers, anti-septics, cortisone cream, piles cream, local anaesthetic cream, urea based cream, vit E based cream, the Xeloda cream and a whole bunch of others. In fact, I could probably open a pharmacy with all the meds here!!
Kebab, sorry to hear the HFS got so bad. Did your hands swell up too? I know it's scary to take chemo breaks, but look on it as a recuperation time, and Xeloda seems to be so flexible with how you take it. I hope you'll heal up in your time off X, and that the new schedule will work better. I sleep with gloves, socks and tons of cream on. It also helps when I can bandage the cracks (but that's not possible on the feet). The creams do help temporarily with the dryness, but don't seem to stop the cracking, that is the painful part. My feet are not as bad as my hands - yet! I tried to put on stud earings the other day, well, that was a circus act - impossible! Also been sewing, which is getting very tricky with sore fingertips (I get cracks on my fingertips as well as knuckles and in any folds). It's also messing with my playing of games on my i-Pod!!! Am also finding that the hfs doesn't quite heal during my week off - I can see where I'm going to crack during my next cycle (that will be cycle 8). BUT, I feel it's still a fair price to pay so long as it's still keeping me stable.
Had the most brilliant visit with my son (he lives in Israel), ending with us going up to Johannesburg for a few days to visit with all the family there. Top thing on my bucket list is to spend as much time with the amazing, loving family that I have!! Got home and had a 24 hour gastro bug. Well, it knocked me flat for 2 days - and it was scary to see how little resistance I have. Am so afraid to get flu this winter.
Hope we all have a good, pain free weekend!
0 -
Well, looks like my mom's side effects came on all at once and quickly! Her feet get crazy red after a few minutes of walking and begin to hurt/burn and now a few of her toenails have turned black and her big toenail is wiggly and getting ready to fall off! We knew the redness and was coming, but is it normal for toenails to turn dark and fall off? As she says, it's still way better than the alternative but she wants to make sure this is a normal se for Xeloda since her onc is off for a few days for Easter.
0 -
thanks for this post. I started xeloda today and this is exactly what I needed to read!
0 -
Goldengirl, l'm, not sure about the nails. I knocked my big toe and the nail came right off and it seems that my nails are lifting a bit from the nail beds, lost half of another nail on my small toe too. Best to check with your Mom's oncologist, or the oncology nurse though.
Started cycle 8 today - my wbc has started to drop below normal, not low enough to cancel chemo, but need to take good care to avoid the dreaded flu bugs! Been told to wash my hands like a surgeon, use an alcohol cleanser too. Then slather with cream - the soap & alcohol really dries out the skin. My doc also told me to cover the big cracks, if possible, with some cortisone cream on under the bandage. Between washing, creaming, bandages don't stay on for long, but he says overnight is good enough.
Depression is also been hanging around for ages and I didn't want to acknowledge it, I cover up and play the clown and come across as fine, when I'm floundering inside. So I'm going to see my shrink tomorrow and check out the meds I'm on and if we need to change or adjust them. Was told I need to see the light at the end of the tunnel - then later I thought, well, what is the light at the end of my tunnel? Seriously, not to be too negative, but I figure that light is another freight train coming at me! I get that the light is the hope and living life, just feeling pretty negative and I hate that! I even bore myself with my 'poor me' stuff! I've been treated for depression since my 20's, so it's an old foe, and I know it better, so am able to catch it before it gets too bad.
0 -
When I went to see my onc about my hands and feet, she was surprised that my nails are still good. I didn't know that nails were a problem with Xeloda, but I guess so after all.
I haven't been getting cracks. My fingertips are peeling and I get big crevices, like deep folds, in my feet. I almost wish they would crack, to relieve the pressure from the folds. I'm using a combination of cream and petroleum jelly as often as I can.
Carolben -- I hope you're able to avoid those nasty germs! Hopefully your counts will come back up. I'm sorry you're having trouble with depression. Seriously... light at the end of the tunnel? wth? That seems like a really odd thing to say to a stage iv patient. Hugs to you. I hope you can get your meds sorted and get feeling better soon.
0
