All about Xeloda
Comments
-
Yea!!!!!!
0 -
Hi Gail5 and all you lovely ladies..i am a uk chick bit of an oddie tho!
I started Xeloda...about 14th September first one! I was ok taking 3600mg a day...
I went to London for a second opinion...2 days before i went...i started with this leg PAIN...wow some pain...started above knee...this NEW to me consultant ..plus he wasnt nice at all...said oh its probably cancer in your Femur....then he said a lot mre negative stuff..after that and my cance on my breast wound site was ALL cancer...my own sugeon didnt come up with that one! He told me to throw calamine lotion at it! i get home next day....on loo and i suddenly hear 'CRACK' across my back plus tissue ripping..i cant move for pain...since this i now have PAIN in the other knee and right wrist....now i might be an oldie..but i sure dont look it not finished yet....i like to have blonde hair with streaks and bright red lipstick...i dont have a big head ...just a good sense of humour cos you need it in the UK.....
If any of you suffer arthritic type conditions...i do well i would wouldn't i ? i get everything going...i was told i had osteopenia..now there is something far more serious that does not get picked up called Osteomalacia.and tell what you think? please? i am sorry i am a bit drugged up at the moment...but i have stopped my painkillers..for now i thought i had sent Liverpool football cluc $4000 by mistake.....oops
Dulcie xxxx
0 -
Robin - That's fantastic news. Long may it continue to work for you.
Buburuzza - I've also been told they don't usually give you hormonals and chemo at the same time as they could interfere with the chemo working. Also I think they like to keep them in reserve to give you a break from chemo. My onc said when things were under control it was an option for me.
0 -
Robin, sooooooooooo happy for you! Keep it up! Great news!!! So happy X is kicking that cancer to the curb:)
Hugs
0 -
Marsha i take x with tykerb gave me bad D on my off week dropped tykerb by 1 pill now its do able also heres a weird one that really helped grated beets with lemon juice . got real good report from onc he said no scans this month cause he doesn't need a scan to tell him how well it is responding. hope aall are doing well and have agreat weekend
0 -
Dulcie, go to Holland&Barrett, buy a bottle of horsetail, taking maximum dose (6 pills per day, 1 pill each time). It may help. Anyway, no harm.
0 -
Dulcie - how are you doing? I think you're post crossed with my last one. Can't see what good calamine lotion would do. Hope your pain is more under control.
Braids3 - that sounds like good news, hate having scans.
0 -
Hi Girls
Thanks for the congrats on the nodes shrinking! Started cycle #2 today...hope it kicks the back pain out! Fighting a head cold...laying low. Onc on Thursday...will post TM results then.
Hugs!
Robin
0 -
Hi Girls
Onc agress that both nodes have shrunk and no longer there. TM's were up again...now at 1100. Onc says Xeloda can give bouncing numbers and he's not worried now. getting the mediport put in 11/5....scan the end of November (after 3rd cycle of X) and start Zemota early december after Onc. visit. All in all, a good news day. Now if this cold would just leave......lol
Hugs!
Robin
0 -
Robin - great news. Hope the next scan also gives good results. Try not to worry about TMs.
0 -
Hi girls, new to this thread. I started Xeloda in July and my markers have come down and go for an MRI on Tuesday to see what is happening with all the bone spots that were there in June. For those of you who have stomach issues my oncologist has me on Rabeprazole Ec. This really helps with all the stomach acid. I had surgery on my back in March this year where they replaced 2 vertebrae that were pushing on my spinal cord as well as removing a rib that had a large tumour on it. I lost use of my legs and had to learn to walk all over again. It has been a challenge wearing back & neck brace for over three months but feel pretty good now. When the weather gets cool out though my back does start to seize up - great for heading into our Canadian winter- LOL. Have been reading your thread and just thought I would say hi to all you lovely ladies - we are survivors and we will fight this dreaded disease. Saskie
0 -
Hi Saskie - good to hear you're feeling better now after surgery. Not looking forward to winter either, although I think winter is worse in Canada than Scotland.
0 -
Thanks Gail, Guess I will just have to learn to layer real well. Do you ever notice that you don't get hot flashes when you are cold and could use one.
0 -
Hi Saskie
Welcome to the X group. Good luck on Tuesday....let us know how you did!
Gail...I try not to worry about those TM's. I have to let it go.
And girls...I am outside of Buffalo, NY. My winters beat both of yours! lol
0 -
hi ladies
im new to this post and would appreciate your input/advice.....
i started X last thursday and until now no s/e except a bit tired in the afternoon(could be age..lol)
today and last night i have had a tightning in my chest ...no pain apart from when i try to eat or drink...i wondered if it was indegestion(never experienced it before to know) it feels like ALL the pills i have to pop are wedged in my down pipe(sorry dont know wot its called) has anyone had this?
i have loads more id like to ask but i dont wanna make a nuisance of myself...(just yet,,
)all the breast
tracy..xx
0 -
tracy108 - Welcome to the site. Don't even think about being a nuisance. You just ask all of the questions you want. Everyone on here is so good to respond and it is a big help to have people that have experienced it tell you what did or did not help them so ask away. I did not have any pain in the chest but I take Nexium everyday and that helps with indigestion. I only have the nausea and hand and foot syndrome, and some fatigue of course. Other than that I have not had to many problems with it. It is one of those that I can live with if I have to, at least things are manageable for me. I am on the 7 days on and 7 days off regimen. I started a year ago in September, taking four 500 tablet in the morning and four 500 in the evening, in December was cut back to 4 in the AM and 3 in the PM due to hand and foot and nausea being bad. I was cut back again to 3 AM and 3 PM in February, in April I was cut to 3 in the AM and 2 in the PM. In September we did scans and found that it had spread to the Omentum so I started on Taxotere and Xeloda at the same time, that is when he cut me to 2 in the AM and 1 in the PM until I am done with the Taxotere then I am sure when I get done with that chemo he will increase the dose of the Xeloda again. You take care and ask any questions you may have, I am sure someone will be there to help you out.
0 -
Tracy - welcome. I haven't had the chest problem but do get acid reflux and digestive problems seem to be fairly common.I would give your chemo unit a call to check it out. Feel free to ask more quetions, you're not being a nuisance if you do and there's a good chance someone will have an answer for you. I get tired too and finding it harder to get up in the morning, especially on the week off when I don't have to force myself up in time to take the pills. I'm at the end of cycle 6.
Jeanie - I am so glad I only have Xeloda to deal with just now, TAX was bad enough on it's own. Hope it does the trick for you though.
0 -
Hi, everyone - I'm officially joining this thread. I was dx with mets to lungs and bones 2 weeks ago. It came out of nowhere, I had zero idea. I was supposed to start X this past Monday, but woke up with a killer sinus infection. So doc said antibiotic first for at least a few days. As of Wednesday he said I could start basically whenever I wanted. I've been playing a little game with myself - "Well, I'll start Monday...maybe Saturday...and I've finally decided it's today.
I have a hilar node(s) thing going on in the right lung that's 3.8 cm, (in addition to other nodules in both lungs) and I swear now I can feel it (feels like a dull ache) when I take a deep breath. I couldn't feel it two weeks ago - so now I'm freaking out about that, and I realize that the time for mind games about starting the X is over.
I am scared of it to be perfectly honest - even after reading everyone's mostly positive experiences. It scares the hell out of me. But I know I need it. That dull ache tells me I need it NOW.
I am going to be on 2000 mg. per day 14/7. I will try to faithfully post any and every SE/weird feelings/whatever so that others reading may compare their experience if they want to.
I feel like I'm about to jump off a cliff right now. Gotta' make myself something to eat first, and then it's go time.
Thanks!
LL
0 -
Hi LL - sorry you've had a mets diagnosis but at least they're not wasting any time starting you on treatment. Hope you have minimal SEs. Psyching yourself up to start is hard, but beats the alternative.
I'm getting my first chemo 'break' after cycle 6 to let hands and feet recover. So will hopefully get supply for cycle 7 in a week instead of today. Luckily have onc appt next Friday too so will be at hospital anyway and she can check them before I have chemo. I don't have any blisters or peeling yet at least, but was starting to have problems doing fiddly things (like cleaning contact lenses) and they are a bit more painful now.
0 -
Gail,
I'm so sorry to hear of your pain. I type all day long for my job, and I fear losing my dexterity due to pain. But as you said, it sure beats the alternative.
I guess I feel like I'm going to get zapped with lightning or something when I swallow the pills. Today is the best I've felt physically and emotionally since my dx, and I just don't want to ruin it. Between crying my head off, having to travel to tell my son, then getting good and drunk with friends two nights last weekend, and waking up to a sinus infection on Monday (and of course working the whole time), I was really feeling like complete and I mean complete crap in every way possible and totally exhausted.
Now the sinus infection is easing up, so I don't feel like someone punched me in the face, I've gotten a grip on the "weepies" and my anxiety, but these damn pills are staring me in the face. DH and I decided I'd start tomorrow, but I was gonna be brave and just start it today so he doesn't stare at me all day tomorrow worrying too. Wanted to say, "Look what I did, and I'm totally fine!!" Don't know if I can do it though. I've thoroughly freaked myself out totally.
They need to make a specialty - Psychiatric Oncologists!!!! Lord, maybe they have it, and I just don't realize it. LOL!
0 -
gail5 - Did you take Taxotere also? If so did you have many side effects from it? I have been on the Tax site and posted some but do not remember if I saw you on there. I swear since I started taking it my mind sometimes does not remember like it use to. I don't know if it is because I am in a fog for a week and a half after treatment or if it is a cumulative effect. I so hope it takes care of the progression along with the X. My doctor said his goal is to get me to a point where he can give me a chemo break. I have had 3 rounds of Taxotere and go for a CT and bone scan on November 7 then see the doctor the next day to see if it is working. My tumor markers have gone down some so I am hoping that is a good sign that this is working but will find out on the 8th and have another treatment of Tax. He thinks we will do 3 or 4 more rounds of it, if it is showing improvement on the progression, if not, well he will probably switch to something else. I just wondered how you did on Tax.
LizLemon - I felt the same way you do when I first started X. I took it and thought that I would instantly feel something. I had no problems except for the nausea and kept that under control with Zofran and/or Phenegran. I am sure you will do fine and will actually feel better once you start taking it, just for the fact that you feel you are doing something to help yourself by taking it. I hope you have good luck and minimal side effects from it.
0 -
jeanieb - Thanks so much for the encouraging words. I hope you get great results on your next scans. Will be thinking of you...hope you will enjoy the weekend!
LL
0 -
LizLemon, it's time to jump in the deep end......even if the water turns out to be ice cold.....you will get used to it and I hope the few side effects are kind to you.
Right now I'm on 7 on 7 off 1500mg, and other than dry skin and crappy cuticles, it's been very doable. Went for scans this morning, won't see onc until Tuesday. Hope I can stay with X but preparing for a change if I have to.0 -
Hi, Chickadee!
Well, I totally ate my breakfast, and started the count down of the half hour...and yeeeeah....didn't take them. But, I WILL take them tomorrow a.m. That was my plan with DH, and I have to stick to that one. He seriously should've been a nurse, because even though I feel fine and all that, he has totally switched to care taking mode (which, of course, I love him for, and am so grateful for).
I hope your scans turn out great when you see the onc Tuesday. Are you feeling like you might need to change?
LL
0 -
Had a blood test just before last weeks vacation and the liver numbers caused the onc to be concerned. So the scans might confirm what I hope isn't true.
0 -
Chickadee,
Oh no... I hope there's nothing there. You will be in my thoughts on Tuesday. The waiting is the worst. The finding out isn't so spiffy either...
Gentle Hugs,
LL0 -
Hi Tracy
Welcome to the X group. I have had acid reflux and felt like a knife was twisting from the breastbone to the middle of my back. My primary started me on Omeprazole and it took that feeling away. I hope you called and that is all it was.
LL...Welcome to our X group. I know how overwhelming the first few weeks...just keep breathing. All of the girls have given you sound advice...and I want to tell you my story. When I started Xeloda, I had a really enlarged lymph node in my neck and one in my armpit....and by the end of my second week on Xeloda...the neck lump was gone and my armpit had reduced by 80%. (It's now gone too). My ONc was surprised with my quick results....and yours may not be the same. BUT you have to take the meds.
Wishing both of you the best of luck and keep us posted in your journey.
Hugs!
Robin
0 -
LL - hope you've managed to start the pills today. I found SEs kicked in gradually, but if you get severe SEs in first cycle make sure you contact your unit as you might need a dose reduction. Also, a few people are missing an enzyme that is needed to convert the Xeloda and get bad SEs fairly quickly, so it won't work for them. It's quite rare though so you'll probably be OK.
Jeanie - I was on FEC-T for primary dx (4 cyc;les FEC/ 4 cycles Taxotere) before I found this site so hadn't posted at the time. I found SEs mainly sore feet, general aching (but was also taking neulasta jabs so not sure how much pain was due to that), fatigue and crap taste buds but all these for just a few days. Also had longer term peripheral neuropathy but this wasn't too bad.
Robin - that was impressive results.
Chickadee - good luck with scan results. Hope you can stay on X.
0 -
Robin, Great news about your swift and positive results.
Liz, It's always a bit scary starting a new drug not knowing how it will affect you. I've been on Xeloda for over 2 years now - 3500, 14/7 - and it's still keeping me stable! No nausea, no hair loss, no diarrhea. I do have hand/foot problems, but it's a small price to pay for staying stable. I occasionally take a break to let my feet heal from the inflammation. I hope X is as good for you and that it works for a long time.
Chickadee, I hope your scans turn out well. Scan time is always worrisome -the uncertainty, the waiting. My onc, post scans, greets me with either your scans look good (yaay) or we have to talk about your scans (crap). Wishing you good results and a reason to celebrate.
0 -
Well, ladies, I swallowed the pills yesterday, day one was (Saturday, 11/3). Lightning didn't strike, and I only noticed the following...my hands developed a pretty good tremor about 3 hrs. after I took the first dose in the morning, but that subsided, and then went away completely. Later in the evening, I noticed slight constipation. But that was it. No nausea, no diarrhea, and nothing else different at all.
Thank you all for talking me off the ledge!
Robin - what fantastic results! I am so happy for you and to hear that you had such an excellent response from this drug! I am hoping for the same.
Jill - wow - that is awesome that this drug is keeping you stable, and that you have tolerated it well all this time. This really gives me tremendous hope!
I will continue to log any and all SE's here.
Thank you all so much - it is so great to know you are here. I would've completely lost it by now without you wonderful ladies.
LL0
