All about Xeloda
Comments
-
I'm with most women that the two weeks that I'm on Xeloda, I'm exhausted and need to nap and go to bed earlier than usual. What I have found is that last month I was hospitalized because I was so pale, sweating when I walked or did anything to the point of it running down my face and back (I'm someone who all her life never sweated, could be in a sauna for hours and have little to no sweating). The conclusion was I had a terrible flu. Doctors stopped Xeloda for two weeks and then I started back this week and again the sweating and chills. I looked at the Xeloda on the web and it says that pale skin, sweating, and over all ill feeling is a rare but is a side effect. Are any of you ladies taking this more than 9 cycles have had such later or sooner?
Hansaim I'm right there with you. I'm on the same cycle as you and I too rest most of the day and save my energy for later in the afternoon and evening to share with my daughters who are grown. I sometimes fall asleep while watching a tv on the weeks on then on the week off I'm the opposite, have trouble sleeping or falling asleep. Xeloda has kept me from progressing any further and next month will have PET Scan to see if tumors in lungs, liver, kidneys or spine etc., have shrunk or have begun to shrink.
0 -
Elisimo, good luck with the next tx. Hope it is gentler on you..
MandyMo thanks for the good wishes.. yep, the fatigue is in the package.. I prefer afternoon naps as well, to have some energy for the after school hours.. glad already retired.. As X's effect is cumulative, I find dealing with fatigue harder, so definitely need the midday nap. Family & friends have already adjusted to this.. so no problem..
I had the flu two-three times during the earlier cycles, and did use lots of antibiotics.. Guess my immune system got used to the situation and feel better now.. Though shortness of breath and tightness of chest remains. Already on heart pills as well..
I put on a few pounds during the first few cycles, then they were gone themselves in time.. My appetite is normal..
Found out walking each day helps the spine and decreases the pain as well as making you feel more energetic.. definitely suggest that!
hugs all
Ebru
0 -
I started Xeloda in January at just half the dose and one week on, one week off. I also started incorporating turmeric drinks while on it after reading this:
http://www.ncbi.nlm.nih.gov/pubmed/22147524
In just a couple months my Ca 27.29 went from 1,278 to 601. I've had quite a bit of fatigue but not napping, and I'm working a full-time challenging job. I refuse to change up the dosage even though my doctor is pushing me to go full dose. With the cancer dying off that fast I find it uneccessary especially when I don't want the side effects. I'll even skip some doses when I feel too many side effects, and I quit taking it a few weeks when I was in Europe. I was not going to deal with chemo while there. I also have to keep working to provide for myself and keep up the very active lifestyle I love. I'll have my Ca 27.29 checked again next week. It's been working great with incorporating the turmeric.
As far as the HFS, I have had some sporadic sharp pains in my hands and feet. I've experienced some dry skin and peeling on my feet, but nothiing serious. I use essential oils from Young Living to help with that and keep my feet and hands moisturized.
0 -
Carrie, it is nice to hear that X is working for you and that you appear to take it at your level (we are all different, and so our drug reactions are also different) . I agree, with what you are doing (and it appears to be working for you). I think that most of us would have had to take a break from X for one reason or another (usually SEs), however, most of us started with the maximum dosage and then gradually decreased the dosage. Good on you for refusing to increase the dosage of X as the guidelines for X clearly state to start at the higher dose and then gradually reduce if necessary. I have copied and pasted a paragraph of the Guideline, which your doctor may not be aware of.
2.2 Dose Management Guidelines
General
XELODA dosage may need to be individualized to optimize patient management. Patients should
be carefully monitXored for toxicity and doses of XELODA should be modified as necessary to
accommodate individual patient tolerance to treatment [see Clinical Studies (14)]. Toxicity due to
XELODA administration may be managed by symptomatic treatment, dose interruptions and
adjustment of XELODA dose. Once the dose has been reduced, it should not be increased at a later
time. Doses of XELODA omitted for toxicity are not replaced or restored; instead the patient should
resume the planned treatment cycles.
Warm hugs
Mandy
0 -
Has anyone here been put of the " generic" version of Xeloda. It appears that my Medicare Advantage HMO will pay Zero of the Brand Name but possible may cover some of the generic , the social worker thinks. At $700 to $1200 per month I don't think my SS will be enough to cover all my expenses.Rene
0 -
GrammyR - I started receiving the generic version a couple of cycles ago. The only difference for me has been that my copay is lower with the generic. The pills look just the same as the name brand and seem to work the same for me too.
0 -
I have been on the generic brand since my first cycle in October. My TMs went down and have plateaued and a recent PET showed no progression, so it is working so far for me. Often when things switch to the generic version, the company that makes the patent drug just starts making the generic, so it's probably the same thing.
0 -
I started the generic brand about 3 sessions ago, don't notice any difference in side effects. My hands have finally healed up and look quite good, my feet are still peeling, but I mentioned to my oncologist today, that I didnt have the pain in hands and feet this last session, and my hands have healed. She replied that my body is finally adjusted to the medication, and so My hands may not react the way they had been doing. Ive been on xeloda for a year and a half, so if this is the case, any ladies having hand problems , how long have you been taking it. I just wondering if her observation is correct, or if they will go back to burning and paining. If she is correct , then it means good news for ladies with bad side effects, your body may adjust. It might take over a year, but - anyway don;t know if this is good news or just being in dreamland. Judi
0 -
kebab- I wss initially told Zeloda not covered at all on my plan then today hearing that it is covered on Part B Medicare but not Part D ( pharm plan) . Even co- pays can get expensive. If I will need Zofran it will be a 50% co pay.
Mompsych- I surely hope things will stay on hold if I go on it. I have read good reports so far.
Justjudi- yes the SE are rather worrisome as I already have neuropathy in both feets and right hand . I have managed that pain for a long time so will pray and hope I can handle it. Buying a little more time on this earth may just be worth it.
Thanks ladies. Will be talking to my MO more on it Friday. What kind of dosage are you on.
Rene
0 -
Quick question - I'm doing 10 cycles of Xeloda (got 2 more to go), and have been stable. My onc says if after the 10 cycles, my ct scan shows stable still, we should think of having a break in chemo. When I questioned him as to why stop if it's still working and that I understood you could use X for as long as it works and you can tolerate the se, he said that's right that Xeloda can be used for a prolonged period if you are able to tolerate it. He said there is no clear consensus if long term therapy has a definite benefit, but he's happy to discuss this with me after the 10 cycles and then would be happy to continue on therapy if the CT scan continues to show benefit and if I feel that I can continue physically. He says we need to tailor the therapy to me personally.
My question now (always have questions after seeing my onc!) is can you take a break from Xeloda (3 months or more) and then go back on it if there is progression again? Will it be effective again? Does anyone have any idea?
I love the idea of a chemo break in that I know I'll get stronger and feel better again, but on the other hand I'm terrified - it's nerve wracking to know it's there and not be doing anything about it. I've become a chemo slut, omg!!
I'm not feeling bad, have nausea and the hfs has not been drastic, a couple of horrible cracks and peeling, but it was better the last cycle. I get the fatigue and weakness, sometimes more than others, but get around and do stuff just fine. So I feel that I could carry on with this forever, as long as it's keeping me stable! But if I'm really honest, I also know that I'm getting more worn down, I battle to keep my weight stable, am so skinny, Xeloda kills my appetite and nausea doesn't help. When I get really tired my mood goes down and I guess it is taking a toll.
Maybe I'm jumping the gun, and should just wait and see what the ct scan in July shows an then take it from there? He tossed me a curve ball, and I'm all confused again.....
0 -
Hi Carolben,
My Onc seems to have a different view - not sure what is "better." I have been on Xeloda since October, just had a PET and everything is stable, so I am staying on it as long as I am stable. Would you go back on an aromatase inhibitor? Are your TMs and CTCs within the normal range? I have mid to moderate hfs and I'm fairly fatigued, but I will try to stay on X as long as I am stable. My Onc seems to have the "if it ain't broke, don't fix it" view. So, Xeloda it is for me intil either I show signs of progression or SEs become unbearable.
0 -
My onc put me on xeloda back in 2011 for 8 cycles for extensive bone mets. By cycle 8 I was NED. At that point he said there are two options. Some onc continue until xeloda stops working and that is it, it can't be used again. Otherwise I could stop and go back on a hormonal and see how long that worked for me and if there was sufficient gap between uses xeloda can be effective again. I actually took a complete treatment break and had no treatment for 6 months before my TMs started moving up again. At that point I went onto Femara. That held me stable for 18 months until liver mets in Aug last year. Then I did Taxol and FEC with no result and increasing liver mets. So now I am back on xeloda and hoping it will indeed be effective again. Too early to tell as I am only on the start of cycle 3. GGT markers are dropping on blood tests so hoping that is pointing in the right direction.
I think it is one of those make a decision and then live with it cos as we all know there is no definite answer as to whether it will work as they say it will. All hit and miss as far as I can tell.
My onc does tell me that as we progress through each chemo they become less effective, so the first ones are generally more effective and each subsequent ones less so. But that is only a general rule of thumb too.
Not sure if my ramblings have helped but it is no unusual to switch from xeloda and hold it back for later treatment choice.
Moira
0 -
I just s/w my MO to confirm I wanted to try the Zeloda. I have progression to chest wall, lungs and scapula muscle. I still have to get Bone Scan and CT abdomen on May 30, before I can start. I also asked to start low dose but he didn't answer that one. He is nice enough but does not spend enough time w/me. This was by phone. I just had a week from hell dealing w/ all this . He just sticks to things he is going to order and no other discussion. I am guessing also that until I ask to come off or rapid further progression I would stay on it long term.
0 -
thanks for your input Mompsyche & Moira, it really helps. I also feel "if it's not broke dont fix it". But also good to know I can go back on X after a break. I'm triple neg, so don't have as many treatment options, would hate to waste one that so far is working!
My onc isn't that keen on the blood markers (that is the TMs & CTCs isn't it?), only had that done when they found my mets & it was all in normal range. So we go by ct scans.
Moira & Mompsyche, I hope Xeloda will do the trick again! It is a very do-able chemo, I've found.
Had a femoral hernia repair done last Wed, & didn't expect it to be this painful - pulled the skin below the cut when drying after a shower this morning & nearly hit the roof! I stood there yelling with the pain - my poor dogs got really spooked! So I'm in bed with my electric blanket and book. Taken pain killers & plan on staying right here! It's black & looking like rain out, so it's the best place to be!
Bonus is I got an extra week off X to let this heal, my hands & feet are better & my appetite is also a bit better.
GrammyR, sorry about the progression & not getting what you need from your onc. Oncologists treat the whole person, my onc wants to know all about what's happening in my life, apart from the physical care, I trust him, he's intuitive & warm & caring, also frank with me. I sometimes wish he'd speak more about some things, but it's up to me to ask & then he does. I really like him, give him a big hug when I see him. Guess I'm lucky! I really hope X will kick butt for you! Good luck with your scans!
0 -
Carolben - I hope you're healing well from your surgery.
I'm almost done my 14th cycle of X, and my 2nd cycle on the 7/7 schedule. Hands and feet are a lot more manageable, but still pretty thick and sore on the last day or so of pills. I've had a new SE crop up since I started back on X after my 3 week break. On days 2-4 of my cycle, I have the most wicked low back/hip/pelvic pain. I can barely hobble around and feel like I spend all day and night trying to find some position that will make the ache go away... and on day 5 I wake up good as new. So weird, but it's happened on exactly the same schedule the last 2 cycles, so I don't think it can be anything other than a new SE. It's crappy, but, again, I'm certainly willing to put up with it if the meds are doing their job on the inside. I just might need to buy stocks in ibuprofen and pain meds to deal with it.
Hope you're all doing ok.
0 -
Hello, X ladies. I was supposed to start cycle 10 tomorrow, but alas, my neutrophils count is too low. It was 0.6 this morning. It's always been low at about 1 since I started X. Though the guide line is that it should be 1.5, I've been getting away with 0.9 - 1 for the last few cycles. I will go for another blood test next week, and go on 2 weeks on and 2 weeks off cycle. Anyone else out there on 4 week cycle? Anyone else with low neutrophils count? I am wondering if there is anything that I can do to increase the count. Other than that, I am doing well; less pain, better mobility, just fatigued.
0 -
kebab- I am starting X very soon but as a retired RN your symptoms sound like urinary tract or kidney. So maybe discuss w/ MO as to check urine if it continues.
Hansaim- Not much you can do about low WBC- do they give you Neulasta shots when its this low. My last chemo some years ago I dropped every cycle , some people just drop lower than others. Avoiding infection is critical. Wear a mask when out among crowds and family w/colds and flu. I will be carrying a mask in my purse all the time.
0 -
Kebab, that's wierd, I've also been having lower back, hip pain! Am on day 8 of the 2 weeks on. I know I have some deterioration in my spinal bones, around that area, had a trapped nerve there last year, so I've been waiting nervously to see if it gets worse, but so far not. I do speak to my onc about back pain and dead toes. We're not sure if the toes are neuropathy from Taxol or from my back. I guess it's a bit of both, as both feet are affected. I hope it is something that can be dealt with, Kebab, and hoping it'll stay away, you do sound like you get into a lot of pain, poor you - hugsx
HFS has been better the last 2 cycles, some little splits, peeling, my feet still have not cracked but look horribly dry & flaky (despite tons of creams & socks), but not sore. I loose my appetite and feel nauseous on X, trying to just keep putting food into me. Smells upset me more now, too! I had a tub of crushed garlic in my fridge that I smelled first thing one morning - omg - into the dustbin - it was horrible. Had to deodorise the whole fridge! Also for the last 2 cycles I haven't had the mouth sores until like my last day on X, and they heal quickly once I'm off. This time only my tongue is all red and sore, go figure!
I'm good again after the hernia op - it was more painful than I expected - I landed up staying the night in hospital cos I had a spinal block and it didn't wear off till 8pm! Boy, am I grateful that I did stay the night, pain was bad so they gave me pethadine, it would have been horrible to be alone at home with that pain! It took about a week till I felt comfortable again, am seeing my surgeon tomorrow just to check it out, but it's looking good. Now, no more hospitals for a long time, hopefully! I've been so good and haven't driven my scooter for the required 2 weeks!
Sorry about the low neutraphil count, Hansaim, hope it improves. I had neulasta once and it worked a charm! My wbc count has been dropping steadily, but is still within limits. Good advice from GrammyR about avoiding infections. I wash my hands regularly and have the alcohol stuff too (then cream, it could keep me busy all day!), avoiding kids too as they always seem to have cold germs, and not hugging everyone I meet, as I usually do! I cannot get the flu again this year, had pneumonia the winter before last, bronchitis last winter and was so sick I thought I was gonna die!! Can't do that again... I usually have a scarf which I wrap around my face if necessary. I'm on the 2 weeks on, 1 week off, but we did adjust my dose to slightly lower and it's been much easier. I hope the 2 on 2 off will be easier on your system, Hansaim!
Then there is the other thing - I have to move house too! Too much stuff happening. I think I've found a place, which is not my dream place, but it's good for my dogs and I can make it into a comfy home. So I'm calling in the troops to help me pack and move - am dreading it. Of course, there is then the unpacking to do too! This place is very 70's in style - olive green bathroom sink & toilet, dark green carpets! It can be made nicer with lots of colour.
Life keeps on happening, it's just harder to deal with stuff out of the ordinary, or lots of stuff at the same time; I get so overwhelmed, then want to crawl into my bed and pull the covers over my head!!
I'm thinking that the best thing is to carry on with X (if my medical cover will authorise it) if my scan shows still stable. Sitting around, doing nothing chemo wise, waiting for the cancer to progress or spread just doesn't do it for me. X is working so I'm happy to keep on it, but lets see my scan first - that's at the end of June.
0 -
My mother is another Xeloda gal having severe low back pain, though hers is limited to when she first gets up and it gets better after moving for a minute or two. This only started after a couple cycles of Xeloda but she also started back on Zometa at around the same time and that's been known to cause back pain as well.
She had her first scans since starting Xeloda and all of her bone mets are showing healing and she no longer has any enlarged nodes (her mets were extensive bone and 2 supraclavicular nodes). All organs are still also clear, thankfully. I'd say that's as close to NED as she will get since we don't do PET scans here. Whatever you call it -- we are thrilled!! Xeloda knocked down the cancer after significant progression in just a couple of cycles. She was anemic when she started and unable to leave the house because of pain so this is wonderful! Her HFS is getting worse so instead of 2 weeks on and 2 off like she's been doing, the onc has asked her to hold off an extra week before starting the next cycle and will look at her feet afterwards to see how they should proceed. It's been very manageable and her feet have only recently started to flake a little. I guess he wants to nip it in the bud before it gets really bad.
0 -
Hello All,Had a CT scan and oncologist appt. yesterday. The Xeloda is working well for me! I've gotten a good response to it.
Oncologist said an interesting thing to me yesterday and I just want to share. As she was examining my cruddy hands and feet and listening to my short list of side effects from Xeloda she mentioned when she sees Xeloda patients who don't have side effects, more often than not Xeloda isn't going to work against their cancer.
In other words, the fact I'm having side effects is a good outward sign in my doctor's opinion. Side effects equals Xeloda working against the cancer.
I'd never heard or seen this information before and thought I'd mention it. This is just anecdotal information from my doctor but I thought it was worth telling you.
Kessala
0 -
it figures...you gotta feel crappy one way or another...
0 -
Kessala- Thank God- so glad its working- Have bone/ abdomen scans today. Will start Zeloda very soon. With most drugs SE is not a sign of working or not I still suffer bad neuropathy since Taxol in 2006 and obviously it did not work to well as I am back w/ return since last year. This is my last try w/ chemo so am hoping for great results w/ only a few SE. The h/f one is the worrier as I have neuropathy in 3 of 4 extremities.
Hugs to you.
0 -
Hello, ladies. I did the blood work again this week but the neutrophil count is still too low at 0.8. It was 0.6 last week. I was hoping it would be at least 1.0 to start cycle 10 today but it is not happening. Spoke with my MO on the phone. The plan is another blood test next week and go 10 days on and 14 days off. I was on 14/7. I am nervous that X may not do the job as well with the new dosage and schedule. The MO says not to overly worry, but that's easier said than done. So another week of nerve-wrecking break for me. Hugs to all.
0 -
Hansaim, my onc wanted to put me on 14 day on and 14 day off regime, (28 day cycle), however after some negotiations, I am on 10.5 days on and 10.5 days off (21 day cycle) and this has been working very well for me since January this year. My body cannot tolerate the full 14 days and if I take X for 12 days, then I get extreme tummy cramps, diarhhea, nausea, split feet etc. I just did not want to take the 14 day break, so this suits me just fine.
However, I have had a 14 day break twice with no problems, (been on X since November 2012) when my side effects were extreme, so, perhaps you may need the break for your body to recuperate. I just do not feel comfortable having a longer break than the amount of days that I need to take X. (((hugs))) xx
0 -
Hi all!
I've been on Xeloda for 25 cycles, 19 months = 1 and 7 months. Kessala, I can tell you that your Onc is wrong wrong wrong about no side effects equaling the drug not working. In case anyone with no side effects is lurking...I wanted to raise my hand. I was dx in Oct 2012 with mets in lungs and bones. They started me on 1000mg of X twice a day 14/7, (I'm still on same dose) and my tumor markers started to come down immediately! My CA 27-29 is currently 12. I have never had any HFS at all. Nothing! And rarely have I had any mouth sores. If they seem like they're going to pop up, they are very mild, and usually resolve within a few days without any special treatment. In the beginning cycles, I would pass out in my recliner at about 7 pm and also would be terribly constipated. The constipation passed after the first few months. My CTs and PETs have shown shrinking of the cancer or stable all this time-no progression. Strangely, before X, I used to bruise if you just looked at me wrong. Ever since getting on X, I now bruise like a normal person, which is to say hardly EVER. Even tho my platelets are down. Onc doesn't get it nor do I. But it's been a pleasant surprise.
I'm fatigued every day, but I work full time and travel for my job, etc. the fatigue I feel is hard to fight. I just want to nap all the time. It's difficult to "care" about the work stuff. But work I do. Then there are days when I feel like someone slipped me a Mickey, and I cannot keep my eyes open. I seriously sometimes feel like like someone drugged me. The times when this hits are unpredictable. I think I've gotten used to feeling kind of crappy in the energy and fatigue department. I had surgery last year and was off X for almost a month. I started feeling old energy coming back, and I was like, wow...I didn't realize how tired I actually was. I feel like the general fatigue has gotten worse over time. I think I have worse SEs from my Arimidex. It really gives me aching muscles and joints. The pain gets pretty unbearable when I travel a lot and have to lift, twist and bend with heavy luggage for days non stop. But as many of you have said, if it ain't broke I will deal with it as long as it works.
Having been on it this long feels like a double edged sword...one the one hand, wow -awesome, 1 yr and 7 months. On the other hand, omg is it going to shop working any minute? I've got to be pushing my luck now. In reality the longer I am on it, the closer I am to that inevitable point where I hear that it's stopped working. That scares the hell out of me. Just had blood done and a CT yesterday...so we'll see what those results are.
0 -
Liz, thank you for your input regarding side effects equating to X working or not working, that has eased my mind a bit as my side effects have reduced somewhat.
I sometimes feel like you as to when is it going to stop working but today I read about someone who has been on X for over 2 years successfully, so that has eased my mind a bit. Lets hope it keeps working for a very very long time. lol xxx
0 -
I know exactly how you feel Lizlemon. I have been on Xeloda since Dec 2012 and wonder every day when it won't work anyomre. It scared me to no end, especiallyl since my body didn't tolerate the Hercetptin treatment. I will have limited options when Xeloda stops working.
mandymoo- Just wanted to tell you that I love your home town. I stayed in Moana for a week in March. We traveled to and had a lovely day in Victor Harbor. Beautiful place with a very friendly atmosphere. Kids loved it as well.
0 -
Leftfoot, thank you. Yes, I agree, Victor Harbor is a very lovely place. The grand kids love coming here. Always lots of tourists. Its good to know that there are quite a few of us who have been on X for over 18 months. Lets hope it keeps working for a very long time. xxx
0 -
Liz, I'm glad to hear Xeloda is working so well for you!You say you disagree with my oncologist and her theory about Xeloda patients who have no side effects meaning the drug possibly won't work for them.
In reading your post it seems to me you've had a lot of side effects from Xeloda. You've listed mouth sores, fatigue, constipation and low platelets. Side effects from Xeloda are a lot more than only hand/foot syndrome.
So, your having side effects AND getting good results from Xeloda supports my oncologist's theory.
I hope your blood results and CT scan come back with good news. I'm so pleased to hear you've been on Xeloda for so long. I wish you continued good results!
Kessala
0 -
I'm really hoping that (a) the theory that lots of SEs means good work by Xeloda and (b) the crap that I am feeling is, in fact, SEs from Xeloda are both true. The back pain is seriously intense this cycle -- just a constant ache from my shoulder blades to my thighs that nothing can touch. I spend all day doing nothing but thinking of ways to try to ease the ache. I have an appt with my onc next week. I'm hoping she'll order a scan for me. I'm so worried that it's mets acting up instead of just plain ole SEs. But either way, I need to find some way to deal with the pain.
I've been Googling and back pain seems to be a more common SE for people with colon cancer on Xeloda. Some of them have said that a drug like Welbutrin helps a lot. Maybe I'll ask my onc about that too.
Thinking of you all and hoping for good days for you.
0
