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All about Xeloda

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Comments

  • slowloris
    slowloris Member Posts: 85
    edited July 2013

    Hi all! I just got back from a weeks vacation at the Jersey shore. (LBI).  My 2 daughters each brought a friend because I knew I would be too tired to do alot of things. Going to the beach in the late afternoon was therapeutic. Unfortunately, it was my 2nd wk of round 3, so se's were really kicking in. But I had a very nice time none the less. 

    While walking the dog, she pulled and the leash scraped across my hand, and also my 2nd toe on one foot. Huge bubble like blisters appeared on my fingers and toe. The blisters themselves are not sore, but my hands and feet hurt terribly. They feel as if they are swollen and tight, like I cant bend them well, and it hurts to even try to make a fist.

    Has anyone gotten these types of blisters before from trauma, and does the hand foot syndrome get worse with subsequent rounds, or does it level off? I can tolerate the se's if I know this works, which I won't find out until atleast the end of August. Any other tips to minimize se's besides lotions and creams? Wondering if ice baths for hands and feet would help.

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited July 2013

    stagefree - Thanks for the info.  I see the onco this Thursday and am going to bring this up to him and see if he wants to do some scans.  I am due for scans in August or September but he may want to do them sooner.  I had scans in June and things were the same but I know how quickly things can change.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited July 2013

    Does anyone have excessive thirst on Xeloda?

    I'm finding I need to drink a litre or 2 of water during the night & am constantly thirsty during the day....

    Not sure I've read of anyone complaining of this but would be interested to hear if anyone has experienced it. Maybe it's not from the X...

    I've been on 2000 mg in the am & 1500 in the pm since mid February this year...

    Thanks for listening girls.



    Karen xox

  • jeanieb2
    jeanieb2 Member Posts: 130
    edited July 2013

    Kazzie61 - I have not noticed any difference since I started Xeloda 2 years ago, maybe others have but I have not.  I drink quite a bit of water all day and everytime I get up in the night but have always done that so nothing new for me.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited July 2013

    Thanks Jeannieb.....I'm thinking it might be related to the big D....

    What about swelling anyone? My fingers are quite swollen & I can't get may rings on...



    Karen xx

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    I have random swelling of both hands and feet in addition to red, tight skin and more recently, peeling of the skin.  What I find helps the most is soaking in cool water after activity such as walking, then lotioning and elevating.  Double sock when walking (2 light socks, such as 1 nylon).  Constant lotioning; using gloves when doing anything that may cause friction in the hands; more recently added aloe juice from the actual plant to the reddened areas.  Any heat aggravates the situation, so after showering, I cool the hands/feet with cool water.  The idea is to constrict the blood vessels.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited July 2013

    Syrmom......thanks for all that info.

    I have an aloe plant in the garden so might just put it to good use!

    It seems there is a build up of symptoms, so I can't imagine taking the X for 3 years....although I do hope it works & i get to stay on it for some time yet!!



    Karen x

  • MamaPeg2
    MamaPeg2 Member Posts: 19
    edited July 2013

    TXGigi - you've been on Xeloda for over 3 years? That gives me hope. Just completed my 2nd round, less SEs. Dark spots on my tongue, hand/foot syndrome, and a bad rash on my arms and legs. I'd be happen to get rid of the rash. It's summer and it looks bad! Oh, let's not forget the big D. I could put up with the SEs if it gets rid of the spots on my liver.

  • DianeKS
    DianeKS Member Posts: 36
    edited July 2013

    Hi everyone,

    Just finished my first round of X. 2weeks on, now on my one week off. I am also on Lapatinib/tykerb. Kazzie61, I have had a really dry mouth and therefore drinking lots of water but it is early going for me. Love that you have aloe in your garden!

    I have a question about hand and foot issues and lymphedema. Anyone have any flares with lymphedema with Xeloda? Should I post in the lymphedema thread? Also, what lotion are you using with affected side? I have hand swelling so I use a glove sleeve (all in one). Wondering about petroleum and the glove...

    Thanks,

    Diane

  • saskie
    saskie Member Posts: 71
    edited July 2013

    I definitely have dry mouth and wake up several times during night - keep a bottle of water on night stand.  Lips are usually dry and/or chapped.   Xeloda keep on working your magic - TM's are coming down - tumors are shrinking.

  • stagefree
    stagefree Member Posts: 360
    edited July 2013

    Karen, I was thirsty conctantly the first 4-5 cycles but now it's uncer control. As normally a cactus-oriented person requiring minimum water, I now even have started forcing myself to drink more water!!! 

    My feet & have swollen, wedding ring already off, feet enlarged a full size all due to swelling. But as far as TM's are lowering, I am fine with that.

    About eye swelling, could that be the need to o to bed & close eyes?? Cos I've started doing that regularly each afternoon & waking up from a 2-3 hour nap I, especially my eyes feel much better. I concluded for myself sleeping helps the eyes from the SE's of X.

    Just completed 7th cycle yesterday & will have my first bloodwork on lowered dosage tomorrow, wish me luck please..

    hugs,

    Ebru 

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    I've certainly been making a conscious effort to drink loads of water.....

    Yes, hands & feet are swollen, I can't wear my wedding rings either.

    Get a bit fed up with it all but it sure is the lesser of all the evils......

    I've been on Xeloda for 6 months now, 1st scan showed an extra tumour on the liver, 2nd scan showed shrinkage of one of the liver mets, bones stable & I've just had my 3rd lot of scans this week & go to the onc for results today....feeling slightly nervous, will keep ya all posted.



    (((Hugs)))



    Karen xx

  • TXGigi
    TXGigi Member Posts: 39
    edited August 2013

    Just wanted to say that my 3 1/2 years on Xeloda has come to an end.  I am going to start armorsin (SP).  Tumor markers have been rising the past few months and I knew it was just a matter of time before I would start a new treatment plan.

    Hope Xeloda keeps working for all you ladies and you all have the great results with it that I did.  Keep in mind that Workings Hands works wonders.  I put it on my feet and hands and for the first time in 4 years I can actually walk around the house bare foot.  Looking forward to my eyes not watering constantly but I am still scared about this new chemo.  Another chapter in the war on bc.

    Good luck to all of you.  I am so happy for all the tips I have gotten on this board.  You all know more than the oncs know about SE's.

    Gigi

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited August 2013

    I get fluids everyday I'm on Xeloda. I can't keep my food or water down. I'm soooo tired that week. I get Aloxi and Zofran that week. Last time, I spent a week in the hospital trying to figure out why I couldn't keep anything down.



    I'm glad that they taught my DH and DD how to hook me up at home. My 11yo DD pushed her way into learning how to do it. After a week of her asking how to do it, we gave in and let her learn. The first time she connected me, I felt horrible because no 11yo should have to learn how to do it. She the type of kids to wants to be a helper. She even had her 8yo brother help so he wouldn't be scared of it. Salt water really isn't scary.



    The only bad day I had last week was the day after I didn't get my fluids.

  • SyrMom
    SyrMom Member Posts: 575
    edited August 2013

    Gigi, good luck to you.  You have defin. been an inspiration to me ... 3 years!  Wow, that's a lot of time.  Pls. let us know how your new tx is going.

  • veggy
    veggy Member Posts: 4,150
    edited August 2013

    I'll be joining this group soon. Two months ago my PT scan showed no evidence of diease. Last week I was in the hospital with sever belly pain. Turned out my liver had cancerous lesions. My oncologist is putting me on this next. I am so scared and depressed. Any advice?

  • stagefree
    stagefree Member Posts: 360
    edited August 2013

    Dear Spam I sooooo can relate with you! hope you feel much better soon and your little ones celebrate your conditon getting better. btw how about trying drinking yogurt's water (not yoghurt drink). The liquid forms as a layer on top of the homemade plain yoghurt. I can pm you details of how to make it traditionally if you are interested. It more than occasionally calms the stomach and helps hydration.



    hugs Ebru

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    Hi girls......I got my scan results yesterday (been on X for 6 months now) & the bone mets are stable but the good news is the liver mets are barely visible on the scan!!

    So I'm pretty happy as you can all imagine....:)

    On the down side, I'm having a brain scan this morning as I've been having a few 'head issues'......but I'm not too worried, hopefully it will just give me peace of mind.

    Just wanted to share my good news & hopefully give others some hope xxx



    (((Hugs)))



    Karen xxx

  • stagefree
    stagefree Member Posts: 360
    edited August 2013

    goooood luck Karen. glad the other mets are under control!!! ;)



    hugs, Ebru

  • amgsc
    amgsc Member Posts: 4
    edited August 2013

    Hi. I'm new to these boards and to Xeloda. I'm on my second round. My first was 2000mg a.m. and 2000mg p.m. 7/7. After that round they decreased the dose to 1500mg a.m. and 1500mg p.m. and put me on the 14/7 schedule. I really do have a hard time when it gets to about day 9 or 10 and would like to go back to my 7/7 schedule. Maybe I'll ask my MO next week. I haven't had a scan yet so don't know what he'll say. Has anyone else had this happen? I haven't read through all of the pages yet, there are so many but it looks like a lot of  helpful information from all of you.

  • SyrMom
    SyrMom Member Posts: 575
    edited August 2013

    Karen ... so happy for you!!  Let us know how the brain scan turns out.  I have liver mets too, so I'm hoping to get the same results.

    amgsc ... I'm on the same dose as you are, following a reduction.  Could not make it to the 14 days because of hand/foot issues, so I'm now on the 7/7.  Even the 7/7 schedule can be difficult sometimes, but I'm doing all I can to take care of the hands/feet so I can continue. I just came off a cycle where I had done a lot of walking and it really flared the feet up; the previous 7/7 was much easier, so you never know.

    veggy ... I feel your pain, I would have the same reaction. At least there's another treatment for you to try.  Take the time to read through this board as it has many tips for handling the hand/foot issues and host of other side effects.  Always, always, take the med at the end of the meal - you never want to take it on an empty stomach.  Let us know how you are doing and what we can help you with.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    Brain scan all clear....so feeling pretty happy :) 😜😜

    Got a grandchild coming in March so starting to think I might just be around to get to know it....:) 💗💖💞



    (((Hugs)))



    Karen xx

  • SyrMom
    SyrMom Member Posts: 575
    edited August 2013

    Fantastic Kazzie .... so happy for you.

  • SyrMom
    SyrMom Member Posts: 575
    edited August 2013

    P.S. Karen .... my 2 cents worth ... I've found since on Xeloda I get some strange, random headaches (have a hx of having headaches for years), so I believe this can be added to the long list of Xeloda S/E.  But of course, with our BC hx all must be checked out anyway.

  • AnacortesGirl
    AnacortesGirl Member Posts: 119
    edited August 2013

    DianeKS - I have lymphedema in my left arm. For the first year I thought I could just do the massaging and only wear the sleeve (I don't have the glove) when I was doing some sort of exercising with arm such as gardening. But I had a flare and the arm got very, very achy and hard. So it was back to PT and learned how to wrap. That got the arm back down in size but it has never completely gone down to the original size. So from that point I got new sleeves and I have been wearing them everyday. So I haven't noticed that Xeloda causes any problems because it could be from so many other reasons. Why do you think that Xeloda is causing a flare?



    Veggy - I am so sorry that you progressed. One month I just had some bone lesions and was hopeful that I would just live with bone lesions for a long time (I was on Femara and Xgeva). Then the next month the tumor marker shot up so another scan and in a month's time I went from 5 bone lesions to more bone lesions and 4 lesions in my liver. It was scary to progress so quickly. But the onc put me on Xeloda and my tumor markers started dropping immediately and significantly. Hopefully you will have good results with Xeloda and will be able to be stable for many years.



    amgsc - It is not unusual for women to try many variations of dosing and number of days. I started off with 1500 twice a day for 14 days and a week off. After two rounds my fatigue was pretty significant on that second week. My onc wanted me to have as good of quality of life as he can give me while still keeping the cancer in check. So he changed me to 1500 for 7/7. My tumor markers continued to drop for another couple of rounds but then they hit a plateau and at the last visit they had actually gone up a few points. So I'm back on 1500 for 14/7 and I find out next week if the TMs are going back down or not. This last week the fatigue started again and I was also getting some minor foot issues. But if I have to put up with some side effects in order to get the cancer to regress then that is what I'll do. I hope you have good results.

  • AnacortesGirl
    AnacortesGirl Member Posts: 119
    edited August 2013

    TXGigi - A three year run is wonderful! But I am so sorry that it has to end. I wish this was a drug that we could take for 20, 30 or 40 years....



    I am wishing you good results with Aromasin. I think that you'll find it easy to tolerate for at least a few months if not for the entire ride. It is not a chemo but an Aromatase Inhibitor. It is for ER+ ladies because it shuts down the production of estrogen. I was on it for 6 months but I was one of the few who got some nasty side effects. The first 3 months were absolutely normal but then my joints began to ache and continued to get worse until the onc took me off. That was way back when I was stage III and still working through the problems of estrogen depletion. I suspect if I was to take it now I wouldn't have the same issues because my body is used to living without the estrogen now.



    Good luck!!

  • DianeKS
    DianeKS Member Posts: 36
    edited August 2013

    Hi Christy,

    No flare, just wanted to see what I'm in for that's all...Binney also recommended wrapping if issues come up. Not my favourite thing to do, but I could do it if needed.

    Diane

  • AnacortesGirl
    AnacortesGirl Member Posts: 119
    edited August 2013

    Diane - do you were the sleeve everyday? To begin with I was really self conscious having it on my arm and everybody seems to think they have a right to know what it is. But now I'm so used to it that if I skip a day I feel naked. And the other thing I hate is that other BC ladies look at my arm and tell me that I don't have any swelling. Well, I do. I happen to have skinny arms and the skin can't stretch too far so it isn't obvious to the untrained eye. But I sure can feel the difference. Especially if I don't do massage and it starts aching!

  • TXGigi
    TXGigi Member Posts: 39
    edited August 2013

    I said the wrong chemo.  I will be starting abraxane.  I knew it started with an A just got confused.  Chemo brain I guess.

    Gigi

  • veggy
    veggy Member Posts: 4,150
    edited August 2013

    I got my box of Xeloda today. I was wondering what day of the week is the best to start it? Id like to have easy weekends. Any other suggestions?

    Thanks

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