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All about Xeloda

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Comments

  • hansaim
    hansaim Member Posts: 68
    edited January 2014

    I am starting cycle #4 today.  TM (CA 15-3) has been going down each cycle.  Bone pain and mobility have been improving, so I am praying that X is doing the job.  The scan is in 5 weeks that is after 6 cycles.  I I do not have any HFS so far.  Fatigue is the major SE for me.  I do not do much during the day and conserve my energy for after school time with my kids.  Healing thoughts to everyone...

  • mutherflush
    mutherflush Member Posts: 85
    edited January 2014

    Hi Lynn1. I have just finished cycle 7 (14/7). HFS started for me at 3rd cycle. It was quite bad and I was given a extra week off and the dose was lowered by 25%. My ca15-3 and cea still dropped and after my scan after 6 cycles showed no visible signs of mets. My bones and lungs showed no  new activity and some of bone mets lesions were smaller. I have tried all sorts of things for HFS and by far the best for me is regular slathering of pure aloe vera gel. It takes the heat out of it and my feet and fingertips (which were quite bad) have now recovered.

    I wish you well on X and keep positive.

    Hugs Helen.

  • stagefree
    stagefree Member Posts: 360
    edited January 2014

    Helen hi,

    Sadly we've lost Lynn1 İ guess last year. Such a wonderful spirit, may she rest in peace!!

    Everyone, hand, feet, chest, face whever there is rash, Sebamed or Nivea Q10 eye cream works in no time!! İ've also suggested MO to suggest other patients.. 

    Hugs

    Ebru

  • CalicoCat
    CalicoCat Member Posts: 299
    edited January 2014

    I think I've been through about 5 cycles of X.  Got my PET results Tuesday and they were "mixed", with some things worse and some things better.  The onc is making no changes to my X dosage/schedule at this time. 

    I asked the onc what comes after X, and he said weekly intravenous chemo, and his goal was to keep me going as long as possible with as few side effects as possible.  I knew that was the case, but it just really knocked me over to hear it.

    Congratulations to everyone who's getting a home run out of X!!!

    xoxoxo

    Calico

  • mutherflush
    mutherflush Member Posts: 85
    edited January 2014

    Hi Ebru. Sorry I read first thread by Lynn1 and replied in error. Chemo fog set in I think. Thank you for the Q10 tip. Will give it a try. I have missed you over past few weeks. You are a great inspiration to us all. How are things going with you now. What are your CA15-3 markers at now. Mine are 79 (still high) but they have come down from 325 since starting X. It seems to be working but slowly. However, liver mets have gone and no new activity in bones, lungs or lymph for past 16months.Hoping it carries on working for long time.

    I see from your picture your hair has grown and you are looking well.

    Loads of hugs

    Helen

  • stagefree
    stagefree Member Posts: 360
    edited January 2014

    thanks Helen.. 

    Currently on cycle 15.. So far so good.. Though I try to take good cate of myself, not much working with hands & feet. No serious HFS yet as I paced things down and do things once at a time. So blessed to have family & friends not expecting the old-Ebru performance from me in any way.. :)) 

    One thinks it really can be possible somehow.. Just not be too hıgh maintentanence & rest first & foremost for sparing energy to the loved ones as the day turns to night.. 

    I can feel the buildup of X in my system with each cycle and the week off (14/7 still) actually feels like the week on but as I try to spare energy everyday.. İt helps.. Like not drinking an entire bottle of water in 2 weeks.. Occasionally I feel as if nothing's wrong with me and overdo stuff.. Well my body immediately sens me to detention, my bed for an entire day.. 

    Each of us have our responsibilities, basic duties, daily chores.. But prioritising of the crucial things ( not easy with chemobrain I know) helps so much. Sometimes not feeling up to it, I leave the dinner table to be collecte the next morning..noone knowing me well would believe it!! I do.. 

    So thankful to each sis.. We share & learn so much from each other.. 

    Edit: TMs in normal range for the first time in two years.. Down from almost 3000 in a year.. Don't really know how reliable they are still, but definitely feel happy about the current status 😀. Hope for even better results fır you all!!!

    Hugs

    Ebru

  • Elisimo
    Elisimo Member Posts: 1,262
    edited January 2014

    Hey there everyone, 

    I start Xeloda on Monday and my onco has me taking 4 in the morning and 4 in the evening.  I am a little scared at the moment after reading all the SEs on the Xeloda website.  I was on Femara for almost 3 years and then it stopped working the on Tamoxifin for 6 months which did not work so now I am going to Xeloda.  I had thought I would go to Aromidex or Aromasin next but now I don't know what to think.  Any thing to help calm me down will be appreciated.  I am in panic city right now.

    AJ

  • stagefree
    stagefree Member Posts: 360
    edited January 2014

    AJ, not all SEs are the same for everyone.  For instance İ was more miserable on Tamox & Femara though only stayed on those for just a couple of months.. Still was in despair when received the news İ'd be back on chemo when learned (as much as İ tolerated the SEs for the sake of not going back on chemo) Aİs didn't work at all for me... 

    MO offered Navelbine (in pill form) first.. Somehow İ felt there were unresolved issues with X from the first time İ tried it, since it giving me a heart attack (! Probably the worst ever thinkable SE, right??) just on the 5th day of the first cycle.. 

    So İ put my big girl pants on and asked to try it once again.. İ'd been on heart protection pills since the attack anyway.. And there wouldn't be another chemo (last time it was Tax) accompanying X. 

    MO was impressed by my courage 😃.. Guess that's what X did as well.. Since Last March İ've been on it.. And frankly the SEs have been managable this time round, İ am leading quite a normal (thogh a lazy ha ha ha ) life.. 

    The best thing about using X is the dosages / schedule can be played with according to your response.. İ started out with 3+3 14/7, now that my TMs have back down to normal range from mm 3000 (!) İ have been lowering the dosage the past couple of months to see if it keeps working still.. And happily it does so far.. 

    Many of the SEs are managable if you take action in time.. 

    Please use stomach protection meds (ones ulcer patients use, not antiacid ones we pop every now and then.. Your MO should know, if not consult a gastro doc) it has helped me wonders.. Turns out not just for X, but as patients on strong painkillers & moodmeds if not anything more, we need that protection right at the start. İ suspect these meds help with my mild nausia as well.. Not really on nausia meds right now.. 

    You have lots of suggestions at hand for every possible SE already.. Ask for it to treat you kind dear, it's not the enemy, but our friend ( as my DH rightfully warned me on a day İ was not feeling so happy to have more meds on my table than makeup kits) to help kill those c-buggers. And hopefully it will treat you kind. 

    Welcome aboard!

    Hugs

    Ebru

  • CalicoCat
    CalicoCat Member Posts: 299
    edited January 2014

    Hi, AJ, I was in a panic, too, when I  had to move from hormonal therapies to oral chemo.  It hasn't been nearly as bad as I thought it would be.  Everybody doesn't get Hand and Foot Syndrome, but if you do, don't suffer in silence.  Yelp!  Let your onc and/or his/her staff know and they will adjust your dosage and/or your schedule of usage until the SEs are tolerable.  For example, my onc first let me go from a 14 on/7 off schedule to a 7 on/7off schedule and then also let me take 2 weeks off at one point.  I'm back on the 7/7 schedule now and things are much better.

    I take a ranitidine (Zantac) every time I take X because I found I was getting hearburn from the X.  The ranitidine did the trick and no  hearburn now.

    The ladies here have lots and lots of wonderful suggestions for treating HFsyndrome.  With the adjustment of my protocol, and using the ideas here and from my onc, mine is very tolerable.  And you may not get it at all.  And many have fabulous results from the drug for a long time!  So relax and know while transitions are hard, you'll soon be an old Xeloda pro and doing fine.

    xoxoox

    Calico

  • Elisimo
    Elisimo Member Posts: 1,262
    edited January 2014

    Ebru and Calico, thanks for the encouraging words.  I talked to my onc yesterday afternoon and he said I "could come in any day any time to see him about anything", that has helped also.  I had a dear friend that also had a heart attack on Xeloda.  She passed away this last year, she was my rock and we had great trips, visits and talks together.  I really miss my Marybe.  I think that may be why I went to panic city when he said he was putting me on Xeloda.  

    Thanks again for the encouragement.  I will report anything and everything to my onc that bothers me and I'll keep coming back here and checking in on my and everyone else's progress.

    Hugs

    AJ

  • Carolben
    Carolben Member Posts: 265
    edited January 2014

    Kebab, I had 6 months of Taxol before Xeloda and the X has definately made the neuropathy I had, worse.  My onc said it could do that - aggravate an existing condition.  I had red and burny feet but no peeling, but my hands are peeling and dry and blister, am using lots of cream, and it's not debilitating.  This cycle the nausea is (so far) not as bad as the last one, but my mouth is all inflamed and burning, down to the back of my palate, and I have that thing in my throat that makes swallowing difficult?  So it's soup, mashed potatoes, watermelon & cream cheese - not a spice in sight!  Boring!!

    Went and spoiled myself and got take away grilled fish with creamed spinach and mashed butternut for supper tonight - all very soft and easy, and healthy.

    Great news, DancingVeggie may X continue to kick butt!!  I too am a picker and ripper off of skin - am trying not to do that.  May try a gentle file on my hands?

  • Loveforlife
    Loveforlife Member Posts: 67
    edited January 2014

    So sorry to hear so many leaving this thread. Hope that the next treatment is the right one!

    I just started cycle #5 (14/7) - fatigue is the worst part for me right now. Although my shortness of breath seems to be coming back... I'm hoping I'm not going to be the next one to move on from X, since I'm triple negative and the amount of drugs to use are limited.

    I was supposed to have scans last week but a blizzard caused the center to cancel all tests that day! So, I have to wait until the 22nd to get scans and the 23rd for results.

    HFS is okay so far - a little peeling on fingertips.

    Thinking of you all and hoping for good results.

  • Carolben
    Carolben Member Posts: 265
    edited January 2014

    Loveforlife, we will be having scans on the same day, results next day too, tho I get them to email me the results on the same day.  Don't know what to expect, coming up to the end of cycle 3 - last day on is Thursday.  Been getting some pain in the same place in the one lung.  Part of me thinks that the X has worked for so many, why not me too (also 3neg)?  Then I get scared to hope that it is working in case it's not, my head just gets into a mess at scan time!!  Hope we'll both have good news!

  • mutherflush
    mutherflush Member Posts: 85
    edited January 2014

    Hi everyone.

    Do any of you X ladies take supplements?. My onc has offered me B6 for my hands and feet as they are quite bad. I have read that it can give you neuropathy so am a bit apprehensive.

    Carolben. I had a scan after 3 cycles and my mets had disappeared in the liver and mets in bones and lungs showed no new activity. I too had the odd pain but they have subsided now. Apart from the HFS I feel really well. In fact I find it hard to believe I have mets in almost every bone in my body and lungs.

    I wish you and Loveforlife good scan results. Look forward to hearing from you.

    XXXXX Helen

  • Loveforlife
    Loveforlife Member Posts: 67
    edited January 2014

    Carolben - I hope we both get good news too! My tumor markers came down 3 cycles in a row, but now that I'm having more SOB and pain, I can't help but wonder if it's not working. Being triple negative is scary since we have fewer chemo options. My next step will likely be a clinical trial at Sloan Kettering in New York.

    Hope everyone is having a good day.

  • saskie
    saskie Member Posts: 71
    edited January 2014

    Hi girls, well I just got my CT results and Yeah the Xeloda is still keeping the cancer stable.  I have been on it for a year and a half now.  The HFS can be hard on the hands, feet and lips but if gets too bad my onc usually will give me a second week off to get things under control.  New girls don't be too afraid - the dosages can be adjusted and the onc's can give you an extra week break now and then to let things settle down. 

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited January 2014

    I admit that I am extremely paranoid about HFS because of the lingering CIPN (neuropathy) and it is often difficult to sort out whether symptoms are worse from weather (cold weather makes it worse), activity (using fingers makes it worse) or whether it is early signs of HFS. Both feet and hands feel "odd" with a little itching of palms and soles, but I have not noted any redness. Just finished 2nd cycle, so am off for the next week and see my MO before starting cycle 3. Do the symptoms seem to come on gradually like this and then resolve fairly quickly if they aren't too bad? Or can things get bad very quickly? Just curious (and yes, paranoid!) about time frame of onset, how long it takes to get severe, how long it takes to resolve. Will I know it if I get it??? Problem with the CIPN was that I knew after the first dose that things were not right, that I had tingling in my fingers, but the MO I had at the time just blew it off and assured me things would get better, and I ended up having to discontinue taxotere after 3 doses and 3 years later still have problems, so I also have a lot of trust issues, even though I do trust my new MO more than the first one.

    Thanks for any encouragement and advice. I AM trying to use lot of lotion, but such a hassle ..... *sigh*

  • CalicoCat
    CalicoCat Member Posts: 299
    edited January 2014

    Hi, Linda, I have neuropathy in my hands, too, but not from chemo (spinal cord compression in my neck).  I haven't found that X exacerbates it.  

    I had no HFS symptoms on my first 14/7 round.  It wasn't until the second week of 14/7 that it really got bad, and by bad I mean large swaths of the soles of my feet and hands peeling, and redness and burning (but not burning like neuropathy).  My onc gave me 2 weeks off and put me on a 7/7 schedule.  I've now done the second 7/7 and have minimal HFS problems.  So just work closely with your onc and his/her staff and holler if you have problems.  LIke Saskie said, they will adjust the dosage or scheduling to manage the symptoms.

    You asked about onset of symptoms and improvement times.  I found onset was fairly quick, i.e. about day 10 of round 2, I suddenly noticed burning of feet and hands and peeling.  This abated about day 4 of my off week, and peeling continued, but wasn't painful.  I was worried if I kept that up long enough, that I'd run out of layers of skin, and would start bleeding, but that never happened.  Just don't suffer in silence, and you'll be fine.

    I have found that slathering "Udderly Smooth" lotion on my hands and then putting on disposable vinyl gloves to wear at night do seem to have helped a good deal.  I didn't have any faith in it, but decided to try it, and have to say the hands are better. but maybe that's just because of the 7/7 schedule.

    My PET results were "mixed", and after dropping like a rock for several months, my tumor markers are the same as the prior month.  I'm concerned that maybe the X has worked as much magic on me as it will allow.  Any insights appreciated.

    xoxoxo

    Calico

  • stagefree
    stagefree Member Posts: 360
    edited January 2014

    The SOB that I had in the first few cycles lessened with each cycle & the dosage adjustments sure helped with that.. I have the neuropathy & tingly feeling in hands & feet for some time, thankfully nothing more yet. Though I don't push too far, working them.. I did mention about Q10 eye cream before, well it worked wonders on my face (literally had HFS on face!! ) so please do try it.. I used Sebamed's..

    hope the X journey be kinder on us all.. 

    hugs

    Ebru

  • DancingVeggie
    DancingVeggie Member Posts: 47
    edited January 2014

    Scans looked awesome! X is really doing great things for me so far.

    Fatigue is still a problem but less so.  I am amazingly lazy most of the day and then do a bunch at night before bed. Bad because I really need to get some exercise but can't later in the day because kids.

    I have two sores -- a hole on the middle finger of my left hand and a cut on the outside of my right thumb -- that are just not healing.  I've tried neosporin and bandaids, argan oil, coconut oil, vaseline, and they are so painful because they are constantly in use. Anyone have deep cuts that has a tip for me? Super Glue?

    Hope you're all taking care of yourselves.  Big hugs from the arctic tundra of Chicago.

  • Kessala
    Kessala Member Posts: 91
    edited January 2014

    Yep, Super Glue.  Or Krazy Glue or whatever brand name you choose.  I use the glue to close painful hand and foot cracks and cuts caused by Xeloda.  The pain is gone, the skin begins healing.  The glue lasts a couple days of daily living and then might need more glue applied.  But this is the best thing I've found to deal with painful Xeloda damage to my skin.

    Kessala

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2014

    brain MRI and  full body CT scan tomorrow.  My insurance denied the PET scan.  I can't wait until tomorrow is over.  

  • rockinlife
    rockinlife Member Posts: 14
    edited January 2014

    I'm on my sixth cycle of Xeloda.  The first 4 cycles were 2 weeks on, one week off.  Then, after cycle three and four, my week "off" was filled with digestive issues and diarrhea.  My weeks ON Xeloda usually brought severe constipation.  So, my onc dropped me back to a one week on, one week off and that took care of all the digestive problems.  I also started taking acidopholus every day, and I'm totally fixed.  I think the acidopholus stabilized my digestive system.  Take note of this, everyone, as I had severe issues with this and am now totally fine.

    I just had scans and will find out Monday how they look.  However, 15.3 and other cancer markers dropped dramatically after the first two cycles -- like from the 700's down to the normal range!  I haven't conquered the HF syndrome.  I do my best to slather on lotion, but nothing has really been the magic bullet.

    Has anyone suffered from hoarseness on Xeloda?  If so, please tell me what you have done to help. I am a singer and right now really can't sing very much. 

    For anyone new trying this drug, the potential response is totally worth all of the side effects.  I think the important thing to remember with ANY new therapy is that you have to give yourself an adjustment period and just be patient.  After your body adjusts, you can breathe a sigh of relief that you've bought some time and the drug is helping!

  • Carolben
    Carolben Member Posts: 265
    edited January 2014

    Yay for Saskie & Dancingveggie!  Hope the X will keep working for a long time!  1 and a half years is a long time, Saskie, you give us all hope for the same!

    Loveforlife, yes, I also worry about chemo options available to us 3negs  I see you have had the carbo/gemzar - what about Halaven or Epirubicin?  Hang in, I hope the scans will be good news!

    Motherflush, I also feel like you - I can't believe my lungs are full of mets and I'm stage iv - I mean, what is stage iv supposed to feel like??  I give thanks every day to be feeling so well (all things considered), and am just praying it will last!

    Linda, take heart, I found each cycle different - first cycle was a really low dose and I just had indigestion/gas that Maalox Plus helped.  2nd cycle I had just horrible nausea and tossed my cookies a couple of times.  The fatigue started too, also was very emotional, crying at the drop of a hat.  My hands blistered just below the cuticles and skin started to peel on my fingers.  I also had about 3 days of intense vertigo and trouble focusing, but tablets for travel & motion sickness helped that!  The skin on my chest and shoulders broke out in an angry rash, and my legs too, big red, raised spots.  My onc didn't like those, so we'll just keep an eye on it.  The sun definately aggravates that!!!    sigh, I'm a total sun lover! 

    This 3rd round, the nausea was much better, just had a couple of days, my hands are like a desert, dry, cracked and the fingers get like yellow blisters under the skin that dry and crack and peel.  I have cracks at the joints of my index fingers that hurt, I've been keeping them covered with bandages.  If that doesn't work I'll give the superglue a shot!!  I've used the Xeloda cream (think it's udder cream), cream with vitamin e oil in, cream with urea, now I'm trying a gel that really helped my skin after rads - it's made from the sausage tree, but don't think it's available anywhere except in my neck of the woods.  Oh and the tips of my fingers are numb and dry and tender too.  My feet, so far, are just fine (apart from the neuropathy, which got worse), I get a burny tingling, but that's all.  As a trade off for not getting the nausea I got mouth sores that went to the back of my palate, inside my lips, cheeks, tongue - really painful.  Ate ice cream and frozen yoghurt a lot!  Eventually I got a local anaesthetic that I used, even mixed it with water and gargled!  And fatigue, but if I can get myself going it is better.  Oh yes, I got that funny obstruction thing in my throat, had to swallow small amounts, chewed to death, and stretch my throat to drink.

    I started feeling better from about the 4th day off.

    Calico, thanks for the tip re vinyl gloves - I'll try that.  I've been looking for cotton gloves (I think of them as Jackie Kennedy gloves), but no one keeps them it seems.  I'm really hoping that the X will keep working for you, for a while at least

    Rockinlife, I had some hoarseness this cycle - it never developed into a cold, so I wonder....?  I used Viral Guard which is a "soothing throat spray" which protects against cold & flu symptoms.  It has elderberry, Pelargonium, Peppermint oil and zinc in.  Don't know if it helped really, but the hoarseness did go away after a few days.

    Leftfootforward,am crossing everything for good scan & MRI results for you xxx

    I've
    had a few really lovely swims in the ocean, it's been lovely and hot,
    and finally got myself back to a yoga class today - yay 1 I haven't been
    in about 2 months! Feels great!  Going for a haircut today - it's so good to hold onto my hair, it needs a little clean up now though.  Never thought a haircut would feel so special!

    Lovely weekend to all

  • Margaret77
    Margaret77 Member Posts: 3
    edited January 2014

    i was gong to take probiotics but the hospital pharmacist said that nutrapaenic patients can get a fungal diarrhoea on them and some have died, so they dont recommend them

  • Loveforlife
    Loveforlife Member Posts: 67
    edited January 2014

    Carolben - I was dx with mets in May 2013, so far have had carbo/gemzar and am now on X. Haven't had halavan or Epirubicin. 

    My oncologist is suggesting I look into clinical trials for triple negative mets before we try another chemo. He feels that it's better to go for a trial while I am relatively well. Am looking to get tested for the androgen receptor as there are trial available for androgen positive that seem to be going pretty well. Also looking at further genetic testing to see if there are other chemo options or trials that might be worth pursuing. Of course the testing costs almost $6,000 and insurance may or not pay... 

    So, I'm hoping to get some more time out of X before I have to make a decision.

    Also - I got cotton gloves online at amazon. I slather up with bag balm before bed and put on gloves and socks. So far I just have a little peeling on fingertips.

    Rockinlife - I do get a bit hoarse towards the end of the cycle. 

    I also have blurry vision and a nose that just starts running at any time... usually when I don't have a kleenex.

    Wishing everyone a se free day.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2014

    My scan came back and there a no visible nodules left in my liver.  I can't believe it.  I have been on Xeloda and Tykerb for just over a year (something like 18 cycles).  It has been totally worth it.  I suffer side effects and fatigue like everyone else but I will take it.  

    I hope it treats everyone else as well as it has me.

  • CalicoCat
    CalicoCat Member Posts: 299
    edited January 2014

    Many congrats, Leftfoot!!!!!!!!!  What a fabulous outcome!!!!!!!!

    Question:  Has anyone seen both progression and improvement on a scan after taking Xeloda?

    Thank you!

    xoxoxox

    Calico

  • mutherflush
    mutherflush Member Posts: 85
    edited January 2014

    Great news  Leftfootforward. I am so pleased. It gives us all a boost when someone has great results. Keep up the good work!! My scan is due late Feb. Last one showed no visible nodes in liver. Hoping now it will work on lungs and bones. I start cycle 8 tomorrow (Mon) but hands have not improved on week off but onc is giving me B6 tablets with next cycle. Says it may help.

    XXX Helen

  • M360
    M360 Member Posts: 164
    edited January 2014

    Lost where this site was and just found it again.  I'm on my fifth cycle of 14/7 and no HFS, but really tired that I fell asleep three times now when going to see  movies with family, snoring in a theatre is not appreciated.  What I'm finding is that I have stomach issues recurring 7 or 8 hours after I've taken my four pills.  I'm on Protonix and Compazine and other nausea medication (Onc has given three different ones), but still feel like not eating.  The wonderful thing is that Xeloda is keeping my cancer in check, not NED but no progression.  I'm happy with such.  Today I'm just feeling sick and tired and wish I had more energy.  Thanks for letting me rant.

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