Donate to Breastcancer.org when you checkout at Walgreens in October. Learn more about our Walgreens collaboration.
Join us for a Special Meetup: The Benefits of Exercise for Anyone With Breast Cancer, Oct. 16, 2024 at 2pm ET. Learn more and register here.

All about Xeloda

1102103105107108465

Comments

  • RangerMom
    RangerMom Member Posts: 205
    edited July 2013

    Also, want to add that after 3 rounds, my bone scan showed one area smaller uptake but also a new vertebrae involvement.  We did 2 more rounds and today I had a follow up bone scan to see what affect the xeloda is doing.  I have new pain in my left thigh midway between the knee and hip and my ribs have been aching.  I am anxious to see the results tomorrow. 

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited July 2013

    RangerMom - I always seem to get Big D when I finish my 7 days on.  It usually starts the 1st or 2nd day after I finish.  This time it seemed to last longer, but I do not know if that is because I had a Taxotere treatment a week and a half ago, then a Neulasta shot, sometimes I think the 3 things combined make it worse.  When I was only taking X I always ended up constipated while talking it but then the day or 2 after had Big D.  As far as the bleeding, I think you should mention that to the onco, I would be inclined to think like you that it is so irritated and causing that to happen, I have had it happen and it went away after the D left, but still may not hurt to mention it to the Dr.  Hope you have good results on your scans tomorrow, be sure to keep us posted.

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Rangermom, even though a couple of us have reported this side effect, you still have to make sure the calf pain is not a blood clot.  Usually, a blood clot will cause pain, swelling, redness and is often warm to the touch.  That being said, the only true way to know is by having a doppler study of the calf - it's painless; a sonogram, if you will.  I "knew" it wasn't a blood clot, yet, the pain was so intense and it's not worth taking the chance as clots can travel.  Often they travel to the lungs - the last thing I need.  

    I haven't had the big D or spotting, yet.  Don't know if spotting is a known side effect.  Usually any spotting requires a D&C when post menopausal.  I have noticed increased irritation.  Are you familar with or considered trying replens?  Over the counter and contains no estrogen.

    I have been eating 1 super yogurt a day.  Don't know if this is keeping the big D at bay, but figured it was worth a try.

    I'm back on 7/7 myself; could only make it to day 12 with hands/feet screaming.  What dose are you on?

  • RangerMom
    RangerMom Member Posts: 205
    edited July 2013

    Hi SyrMom,

    I'm on 1500 mg twice a day and this is the first round doing 7/7. So far I like it. The SEs are less. 

    I have good news from my bone scan this week, no new lesions comparing to the last bone scan 2 months ago. Nothing has grown and nothing smaller but I'll take it. stable is good - Yeah. I hope its the xeloda

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited July 2013

    Fabulous news Rangermom.....stable is awesome!

    Long may it last......



    Karen xx

  • slowloris
    slowloris Member Posts: 85
    edited July 2013

    SyrMom, Yes , I also have watery eyes, and a runny nose. Very thin clear mucous, almost like hayfever allergies. I don't know if it is an allergy to x or not, but I have no rash or hives, so I'll continue taking it. I have only 1 slight bout with big D, last day of 2nd round, and now i'm finishing the first wk of round 3. It seems with each round , a different se shows up.this round, it's my finger tips. I'm not doing anything about the eyes, other than dabbing with a tissue. I use cream on my hands and feet, and other than a spot which I actually cut, there has been no peeling.I think the skin doesn't heal like it normally would, so be careful not to get cuts or scratches on your hands or feet.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited July 2013

    Hi girls.....yes the runny nose & watery eyes are a side effect of X!!

    I spoke with me onc about it last visit & he confirmed that, said he could give me something for it but that the medication would create a whole new lot of side effects, dry mouth, ulcers etc.....can't win! I decided to just put up with the runny nose & eyes.....



    Take care....Karen x

  • TXGigi
    TXGigi Member Posts: 39
    edited July 2013

    SyrMom

    Been on Xeloda for 3 years and 6 months. My eyes water constantly and now they pain me in the morning when I try and open them up.  I have to put water on them to get them to open all the way.  Not sure if there is any help.  I have heard ladies say they can put stents in the eyes.  I was told they water cause the tear ducts get clogged.  Makes no sense to me.

    Gigi

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Rangermom ... awesome, stable!!  That's what I pray for.  Good for you!!

    Regarding watery eyes; NP said watery eyes most likely from X (I know it is) and it can mean they are actually dry, but compensating by watering.  Advised to try artificial tears.  I'm trying that.  No big change yet, but will keep at it.  This is the first day I'm trying it out. Decided to try allegra 24hr for runny nose, can't hurt.

    Thanks for all the responses confirming the side effect.

  • RangerMom
    RangerMom Member Posts: 205
    edited July 2013

    I too have the eye problems and hurt in the morning to open them. I have an eye exam tomorrow and I'll ask him what he suggests and let you know if he comes up with anything interesting other than eye drops.  Take care all,

    Linda

  • LauraOntario
    LauraOntario Member Posts: 60
    edited July 2013

    I also have the runny eyes, but I have to go see the eye doctor soon because I am way overdue for new glasses.  I'll ask him for some advice.   I don't know if he'll know anything about this, though.

  • saskie
    saskie Member Posts: 71
    edited July 2013

    Rangermom I would mention it to your onc just to be on the safe side.  From someone that used to be constipated all the time having loose bowel movements every day is nice.  But there are some days when definitely can't stray too far from a bathroom because when you gotta go it is right now.  Hope it is nothing to worry about for you but should mention it.  Sometimes these meds can be so harsh on the stomach lining that you want to make sure the bleeding is not coming from there.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited July 2013

    Hi all.....for all the girls having trouble with the leg cramps, I had my onc appointment yesterday & he suggested magnesium supplement....

    So I'm going to give that a go & see if it makes a difference.

    Just thought I'd share.



    Karen xx

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Kazzie ... thanks for the info ... note on magnesium - you will know if you've taken too much by a bout with Big D.  Been told to not eliminate it if that happens, just back down the dose.Smile

  • RangerMom
    RangerMom Member Posts: 205
    edited July 2013

    For eye problems, the eye doc said to use special gel drops at night at bedtime. I got some over the counter and will give it a try.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited July 2013

    SyrMom......thanks for the info. I did wonder about that as when I have constipation ...mostly form my meds....I take a magnesium based product.

    I prefer the big D to the big C......within reason if you know what I mean!! :)

    Have a nice weekend girls.



    Karen xxx

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited July 2013

    Linda- Bright red blood indicates that there is some sort of bleeding very near the end of your rectal tract.  You might have hemroids or very local irritation that is caused by the big D.  I would mention it to your oncologist.  Having suffered from Ulcertive colitis for over 20 years, I can tell you that it is much more worriesome to have dark black stool than bright red.  Bleeding however still needs to be addressed. It can cause anemia etc if it isn't addressed.  I too get blood in my stools near the end of my cycles and my onc and I aren't too concerned.  You should however talk to your doctor as this is a new SE.  

  • stagefree
    stagefree Member Posts: 360
    edited July 2013

    Hi everyone, due to my bone mets, I've already been prescribed by MO Osteocare (UK based product), which says on the box take 2 daily, but I take just one. It's a calcium, magnesium D3 Vitamin combined product. I prefer the chewable, but it is also in pill & syrup form. As far as I know calcium works best in liquid form, btw.

    MO explained people on Zometa / Xgeva need supplements., so I advise you check with your MO.

    hugs, Ebru 

  • stagefree
    stagefree Member Posts: 360
    edited July 2013

    Since TM's down considerably, I'll have 7-8th cycles 1000mg am/1500mg pm 14/7, starting today. Will see whether it will help my rash & more importantly the decrease in TMs. I sure would like "less is same, if not more!" Wink

    hugs, Ebru

  • SophieJean
    SophieJean Member Posts: 38
    edited July 2013

    So delighted to hear your news Ebru, I hope the dose reduction helps and means that you can stay on this drug for years and years 👏🎉celebrating with you,

  • DEbeachgirl
    DEbeachgirl Member Posts: 16
    edited July 2013

    On day 6 of my first cycle of Xeloda, 7 on/7 off.  Only having mild SE such as fatigue and eye soreness (didn't know that was a SE until I saw it on here).  I've been reading through all the posts and just checking in.  Everyone have a good Wednesday.  Laughing

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    DEbeachgirl ... welcome ... my advise would be to keep your hand/feet well lotioned.  Perhaps you can avoid the hand/foot syndrome that I've found to be so bothersome. 

  • stagefree
    stagefree Member Posts: 360
    edited July 2013

    Thanx SophieJean! Smile

    hope the same all of us! 

    Ebru

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited July 2013

    I have been throwing up almost every day I take Xeloda. I actually was in the hospital since I couldn't keep anything down. After 2 weeks straight, I became malnourished. I couldn't even keep water or Gatorade down.



    The doctor couldn't figure out what was going on so I have a cabinet full of antinausa drugs now. It seems like some of them leave me sleeping all day. My kids are home for the summer and I would really like to spend time with them instead of sleeping.



    My onc. doesn't think it's from the Xeloda, even though I feel much better without it. Home Health services came to my house to teach him how to give me fluids every night. I always feel better after fluids.



    Does anybody else have this issue and what do you take to help?

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited July 2013

    I know this isn't the top of the list of nausea medicines but I found that the compazine patch I wore on my ear helped greatly with my nausea during the worst of my AC chemo treatments. It worked better than zofran. I have found that the best drug for me to combat nausea is ativan. That of course makes you sleepy so not the best if you want to stay awake. I also found that drinking lemonaid helped sooth my stomach.  Weird I know as it is acidic but it helped me.  Sorry you are going through this. Hope you feel better soon.

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    SPAMgirl, so sorry you are experiencing this ... I have no ans. at this time as it hasn't happened to me, yet.  Have found nausea more prevalent lately.  In an attempt to try and keep the intestines balanced, I've tried to eat at least one super yogurt a day.  Have no idea if this would help you in any way, but passing it along.  Hang in there & let us know how you are doing and what helps you. One other thought, I take protonix for reflux and when my daughter had pancreatitis (continuous vomiting with it) they had her on IV protonix until she could take it orally.

  • miacouto
    miacouto Member Posts: 4
    edited July 2013

    My mother is on Xeloda for over a year now. Last CT scan (last week) showed NED but mother has been feeling very ill recently, diziness, palpitations, she is dehydrated, complains of dry mouth and lips and feels the urge to constantly drink water. Her latest lab work showed everything normal,despite the low platelets and leucocytes. Only thing abnormal was very high alkaline phosphatase (198) and TMs rising. I'm afraid Onc is not going to chance anything regarding her treatment because CT scan was good. I have a bad feeling, maybe she is suffering from Xeloda SEs and I though maybe it would be a good ideia to lower her dose a bit. I am thinking of sugesting that to her onc next visit on the 31th of july. What do you think? Did any of you had Xeloda dosage reduced and still managed to keep cancer at bay?

    Thank you all for your kind advice.

    Mia

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited July 2013

    Mia-

    I did lower my Xeloda dose once (by one pill 500mg) and I reached NED.  It is possible.  I would talk to the oncologist about it.  At a certain point the benefits of taking Xeloda are diminished by a reduction in  dose.  But many of us have had our doses reduced and cycles ajusted (go to 7.7 vs. 14/7) and are doing great.  Hang in there.  If she continues to feel this way, call the oncologist again and see if she can receive fluids at the office. She migt be dehydrated and not able to catch up just by oral fluids.

    Hugs to you and your mom

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited July 2013

    Has anyone had problems of seeing double sometimes?  I have had a couple of times I see double, I cover one eye and see fine, cover the other eye and see fine but with both eyes focusing I see double, it lasts about 5 minutes, and I have had a problem where my eye is blurry in one spot and like there is something covering part of what I am looking at like there is a black spot over it.  This is hard to describe but just wondered if anyone has had a problem.  I have taken Xeloda since September 2011, last year in September Taxotere was added to the mix. 

  • stagefree
    stagefree Member Posts: 360
    edited July 2013

    Jeanie, I had that problem before dx & therapy, so I guess it ws due to cancer, now it's under control. My doc before BC suggested it could be due to low sugar, etc.. but I am confident that it was due to cancer NOW. Strange though, no mets in brain yet dx'ed..I don't insist on finding any right now anyway so trust the CT's.. hope you find your answer soon..

    Spamgirl, I was feeling quite nausiated during the first cycle of X, then put on stomach ulcer meds (instead of nausia meds which didn't help) I found relief. Now Iam on those meds (not antiacid ones-they interact with X) and feel fine. And as always my favorite roasted chickpeas help soooo much. Sometimes I prefer them over regular meals :)

    whatever works, eh??

    Just started on reduced dosage, will answer on the findings soon enough I hope.

    hugs Ebru