All about Xeloda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2012

    Just thought I'd let you know that I've just been diagnosed with pulmonary embolism & thrombosis in my leg plus an extra fracture found in my pelvis to keep my present, long-term pelvic fracture company.  This might stop me being on the clinical trial for Sorefenib & oblige me to stop taking Xeloda also.  

    Today I've been told that my mets are still stable on the clinical trial drug & Xeloda.  My onc is trying to keep me on the trial drug & on Xeloda.  She's discussing the issue with the trial company, Bayer.  It's the company who makes the decision to keep me on the trial or not. 

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Stupid backache for 10 days now....travels from side to side and ranges from a 2 to a 9 in pain.  Called the Onc today looking for direction...see him or the primary?  He's making room on his schedule for me tomorrow.  Glad to be moving on this...but here comes the anxiety!

    It started the night before I started Xeloda.  So hard to tell who to call anymore!

    Hugs!
    Robin 

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  • Frapp
    Frapp Member Posts: 1,987
    edited October 2012

    Here's hoping they help you get the pain under control.  Maybe once the xeloda kicks in it will subside?

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Thanks Frapp....how are you doing processing the upcoming surgery?

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited October 2012

    My stupid backache turned out to be fractures. I hope yours isn't.

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  • Frapp
    Frapp Member Posts: 1,987
    edited October 2012

    I'm getting there Robin, Thanks.  Just saw copies of my scans from last week.  It show a 4mm nodule in my lung and collapsed lung tissue!  WTF, the doc said all else was stable?  Lucy has some splaining to do when I see her on Wednesday.

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Oh Chick, I hope not!  It travels...so I am thinking maybe not?!  When and where is your cruise?

    Hugs

    Robin 

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Oh Frapp....good grief!  Keep me in the loop!

    Hugs!

    Robin 

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited October 2012

    I ignored my backache last year for weeks. Never occurred to me it was anything but a strain. I paid a heavy price.



    Cruising in 10 days, 6 hours, 15 minutes and ................

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Well, the cream I was using to ease the pain just gave me a burn. Now I am hunting down the Solarcaine! Damn sensitive skin. :shaking head::



    Chick, did you have to wait for the fractures to heal? How long? I'm so sorry you had to deal with that!



    Where is the cruise? What line? We did NCL

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited October 2012

    Robin, I had a collapsed vertebra the first one and ended up hospitalized. My back was hurting and my son offered his hand to help me off the couch and I experienced the worst pain of my life. Vertebroplasty is a procedure to inject a stabilizing cement into the vertebra. I had to work my way from bedridden to wheelchair to walker over about 6 weeks. A couple months later another pain in my back, X-rays found two fractures. We went right for the procedure and I healed much quicker.



    Anti hormonals weaken your bones. Don't ignore pain. It can be anything from simple aches to something more serious. I still wear out sooner standing up and I can't easily pick things up off the floor. I don't try to lift things over 5-10lbs just to be safe.



    Anyway that was last year and this year I'm going on a cruise and I plan to dance at the pool party, even if I look a little stiff.......maybe I should do the robot! Oh the ship is Carnival Magic out of Galveston.

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Thanks for the info. I will let you know what happens. The Magic sounds perfect for you ! It will be magical!



    Robin

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  • gail5
    gail5 Member Posts: 143
    edited October 2012

    Jac53 - hope you can stay on the trial.

    Chickadee - that's a remarkable recovery you had. Enjoy your cruise and try to forget about the scans until you get home.

    Robin - good luck with onc appt. Good they're fitting you in quickly and hope the pain is nothing significant.

    Frapp - it's so weird how some areas can have a good response to treatment and others have progression. Sounds like you're team are quite proactive about removing the new tumours though as some units seem to be reluctant once it's travelled.

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  • LilSchatzie
    LilSchatzie Member Posts: 430
    edited October 2012

    Sort of a little disappointed. After my second month on Xeloda, my Tumor markers are showing mixed results. My CEA is down, but my 15.3 marker is up a couple points. I am trying to stay optimistic and awaiting for scans later this month.

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  • Frapp
    Frapp Member Posts: 1,987
    edited October 2012

    could be that your markers are picking up dead cancer cells.  Let's just plan on that being the case.

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  • LilSchatzie
    LilSchatzie Member Posts: 430
    edited October 2012

    Thanks Frapp, that's what I'm hoping for!  Or that the change is so minor that it means stable.  I also took a 1/2 week break from Xeloda for the ophectomy I had  last month....Not totally devastated, but was hoping that I'd get a bigger bang for my buck on Xeloda.

    I hope everyone is well.  I try to follow this thread....I need to read back a little and catch up on everyone!

    It's funny, I know scans are always coming...but the second I have one scheduled.  The scanxiety starts.  So scared that my scans at the end of this month are going to show something that requires a change of treatment.  I'm hoping that I can stay on Xeloda through the Holidays and if I have to switch it happens after ther Holidays.

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  • gail5
    gail5 Member Posts: 143
    edited October 2012

    Lil - I don't have a clue what my tumour markers are as onc has never told me but I think it's quite common for them to go up slightly in the early stages of treatment before they come back down. Not sure why though.

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Well, I know why my back hurts now....bone mets!  3 small lesions.  Disappointed, but at least 2 of the spots are exactly where I hurt.  And the semi good news is .... Onc agrees that my lymph node is WAY down.  SO....the plan is to continue on Xeloda (I'm only finishing my first cycle) and see him in 2 weeks.  Pain meds to help me control the pain till then.  We did talk about radiation of those spots...but one is very near to my esphogus (sp?) and that made me nervous.

     Come on Xeloda!

    Hugs!

    Robin 

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  • Swannay
    Swannay Member Posts: 98
    edited October 2012

    Just wondering, if anyone knows what meds we can safely use for indigestion while on xeloda? Thanks in advance.

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited October 2012

    Robin, glad to hear you know the source of your pain. I had radiation to some spinal areas too. Relief. I hope you can be free of the pain soon.



    Swannay, I've used Zantac.

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  • LilSchatzie
    LilSchatzie Member Posts: 430
    edited October 2012

    swannay, I'm having the same issue and my onc wrote me a script for Prevacid.

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  • gail5
    gail5 Member Posts: 143
    edited October 2012

    Robin - Sorry to hear you have new mets to worry about. Hope the Xeloda works on them. I think rads are supposed to work quite well on bone mets. Maybe you can at least have it on the other 2. Are you going to get Zometa as well?

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  • Frapp
    Frapp Member Posts: 1,987
    edited October 2012

    Robin, sounds like the xeloda may be starting to work already if the node has decreased in size.  I hope it starts to reduce the tumors in your back so the pain in relived soon.

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Hi Frapp - thanks so much.  There is a significant decrease in my neck and I am praying it will help my back too.  Thank goodness I have been able to work standing up alot.  Sitting is compressing my vertabrea right on top of my lesion.  

    Hi Gail - I have heard that too for radiation.  I probably should have just did it and got it over with.  I don't know why I got such cold feet about it. I have never had radiation.  Yes, Zometa is now in my near future, but I have to get a port done first.  My veins are not tough enough for IV infusions.  The nurses in the CT office all try and take their breaks when I walk thru the door!  lol

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  • gail5
    gail5 Member Posts: 143
    edited October 2012

    Robin - I used to have great veins pre-chemo. Now they look good and deceive the nurses but I did good this week on my blood tests as they got a vein first time. I had rads for my original breast tumours before I was due to have surgery (which didn't happpen yet due to mets) and compared to chemo it's not too bad.

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  • mnmom3
    mnmom3 Member Posts: 319
    edited October 2012

    Question started Xeloda last Friday with Tykerb, I am taking the Tykerb about 3 am, I am really nauseous.... And vomited this morning. I did Xelda only a couple of years ago, no nausea issues. I didn't have nausea with taxol and carbo.



    Any suggestions.? Do they lower Tykerb doses? I am taking 5 pills at a time.



    Thanks,

    Marsha

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  • buburuzaa
    buburuzaa Member Posts: 57
    edited October 2012

    Hi everyone, this board has become an important part of my life since my mom was diagnosed...thank you for listening:)

    My mom started taking Xeloda today because of progression in liver(2 spots 1cm and 2 cm) and her doctor wants her to take femara as well as Zometa. I thought hormonals weren`t supposed to be taken with chemo....because the chemo becomes less effective...thoughts?

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  • jeanieb2
    jeanieb2 Member Posts: 319
    edited October 2012

    buburuzaa - I had asked my onco about taking Femara with Xeloda and that is what he told me also.  As for the Zometa it is to help prevent osteoporosis but has also been shown to help with breast cancer so I still get that monthly but he said NO to the Femara or any like that.  I am sure they all have different opinions, I have gone to my onco for 20 years, ever since I was diagnosed in 1992 and I just have lots of faith in him, and I think that is one of the important things, trusting your onco and liking him.  It will be interesting to see what other doctors have said about this also.  Hang in there and just keep asking questions, that is important also.

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  • Frapp
    Frapp Member Posts: 1,987
    edited October 2012

    My onc at Dana Farber told me no to hormonals while on xeloda. She said the xeloda goes after fast growing cells, which is what cancer is, and the hormonals will slow them down possibly interfering with the xeloda.

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Morning girls!

    Just thought I would post a bit of GOOD news.  I completed my first cycle of X...and am half way thru my "off" week.  The node in my neck is gone and the one under my armpit is shrunk by 75%.  The lesion on my T6 is not hurting at all.  The only spot left is the lesion on my 3rd left rib and that one is still a painful bugger.  I may have to radiate that one.  BUT...all in all...I am thrilled!!!  I can't wait to go back on treatment next week and to see my ONC on Thursday.  LOL.  Who would have thought I would be so anxious to get my bloodwork done!  

    Hugs to all!

    Robin

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