Update from Callaloo

Callaloo
Callaloo Member Posts: 135
in Esophageal Cancer #1
Thanks so much to all of you for being here, even if I haven't been. Your caring thoughts mean so much to me. As William guessed, I have been struggling with the increasingly harsh side effects of the Xeloda. I think it has built up in my system. I took a couple weeks off to try to clear it out, but the break wasn't long enough. Nonetheless, my doctor encouraged me to continue so I have. I have been on it for nearly 12 weeks, and it's really starting to wear me down (you know, the usual-- fatique, pain, nausea), but I'm going to try to finish out this cycle. Then we'll see.

I am still doing better than most, so I shouldn't complain. I know how fortunate I am. It's not nearly as bad as it was last summer when I was on the "big cannons". I'm going to try to hang in there for a few more weeks with the Xeloda and see what the next CT scan says. I'll be sure to report the results.

My biggest regret in not having the energy to even log on to my computer most days, is that I haven't been contributing to the board. I know how much pain and fear most of you are going through and I just wish I could be more helpful. You are all in my thoughts.

Lu in Oregon
SCC EC, stage IVB

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • dodger21
    dodger21 Member Posts: 85 Member
    #3
    unknown said:

    This comment has been removed by the Moderator

    Stay strong
    Stay strong and hang in there. You are doing great and your positive mindset has a lot to do with that. Everytime I look at your great profile photo I see a very positive and optimistic person. I love how you think. Stay strong
    Danielle
  • Donna70
    Donna70 Member Posts: 852 Member
    #4
    dodger21 said:

    Stay strong
    Stay strong and hang in there. You are doing great and your positive mindset has a lot to do with that. Everytime I look at your great profile photo I see a very positive and optimistic person. I love how you think. Stay strong
    Danielle

    so glad to hear from you!!
    Hi Lu,
    Just glad to hear that you are proceeding along. Sorry the treatment is so harsh, just hope you get excellent results on your next scan. My thoughts and prayers are with you and hope you can get more energy and feel better soon. Thanks for checking in and letting us all know what is going on. take care,
    Donna70
  • sangora
    sangora Member Posts: 213
    #5
    Donna70 said:

    so glad to hear from you!!
    Hi Lu,
    Just glad to hear that you are proceeding along. Sorry the treatment is so harsh, just hope you get excellent results on your next scan. My thoughts and prayers are with you and hope you can get more energy and feel better soon. Thanks for checking in and letting us all know what is going on. take care,
    Donna70

    Lu great to hear from you
    It is great to know that you are still going if not maybe so strong. Just know that this too shall pass. I posted early in the week that since last you all heard from me I have been in the hospital, with esophageal problems and cardiac problems. Now doing better and pray that you will bounce back soon. Praying for you, Sam
  • megmacmd
    megmacmd Member Posts: 85
    #6
    good to hear from you
    I have trouble posting and navigating this site Im never sure where Im postingto personal or general Im not very computer savy I am a 57 year old female diagnosed March 2011 with stage 3 EC however even though I am a physician( pediatric neoatology hospitalist) Im still very confused as is everyone I do not have organ mets but do have perihilar lung nodes and peritoneal and ? pelvic nodes that lit up on PET SCAN, I have been on FOXFLUR(oxiplatinum,cisplatinum and 5FU) I have infusions of the first 2 then fanny pack 48 hours of the 5FU I have been doing this every 2 -3 weeeks finished my 8th treatment after my 4th treatment the lesioon was smaller nodes maybe smaller no different. I am still working schedualed for scansnext week and endoscopy So far I have been lucky I have worked through all of this occassional fatigue and nausea. I never feel like eating because everyting tastes like tin and it is uncomfortable to swallow I live on yougurt,applesause bannanas.I am NOT a surgical candidate according to several sources fine with me I hate hospitals. So far this regime is holding things status quo so I guess i should be grateful. I dont know how long this will last I quess eventually it stop working or the side effects are too bad.My goal is to get the last of my 3 great children through college he has 2 more years at UVA in environmental science my other 2 are finished out both with great jobs and the eldest marrried. My husband died 3 years ago of a brain anuersym out of the blue so this is a double whammy for my youngest. I just dont know what to expect this appears to be a very random disease with a mind of its own so ther is no telling. I have decided to just go with the flow if the chemogets too bad and is not helping then I will call it quits I am firmly committed to quality versus quantity of life. I want to work as long as I posssibly can and ehjoy life as much as I can.I would be gladto hear from anyone who faces the same choices mine is not cureable it is only live as long as can betolerable Meg
    Cell 757641-2951 home 757437-9663
  • cher76
    cher76 Member Posts: 292
    #7
    Great to hear from you Lu!
    Great to hear from you Lu! Stay strong and am sending prayers your way.
    Cheryl
  • megmacmd
    megmacmd Member Posts: 85
    #8
    How long to continuen on
    Lu you seem too have my same philosophy if you have the energyplease tell me your whole story or tell me where to find it Sincerely Meg Mac
  • Unknown
    Unknown
    #9
    megmacmd said:

    How long to continuen on
    Lu you seem too have my same philosophy if you have the energyplease tell me your whole story or tell me where to find it Sincerely Meg Mac

    This comment has been removed by the Moderator
  • unclaw2002
    unclaw2002 Member Posts: 599
    #10
    Lu,
    Glad to hear from you.
    Lu,

    Glad to hear from you. Keep the faith you inspire many folks on this board. My thoughts and prayers are with you.

    Hugs,
    Cindy
  • birdiequeen
    birdiequeen Member Posts: 319
    #11
    Glad to hear from you
    Lu, it was so nice to see your post today. You have contributed so much to this sight and the members. I have gained a great deal of insight from your post. Thank you! We will be hoping the Xeloda works and your scan shows good results. Take Care.
  • megmacmd
    megmacmd Member Posts: 85
    #12
    Hang in there
    I never thought I would still be alive or at least in the picture 6 months ago when they told me I had stage 4a esophageal cancer I wasnt going to do any thing since In the past 3 years I lost my dad to bladder cancer my sister to breast cancer my husband of 30 years to a brain anuersym out of the blue and then my mom to breast cancer but my friends convinced me to plug on and I did flofox X10 and I am still working as a neonatal hospitalist full time and hopefully I will get my 3rd anad youngest through 2 more years( maybeone but Im optimistic)of college . My latest biopsy showed no cancer in my esopagus of all things my nodes shrunk still to see aboutthose pesky pelvic nodes on a Pet scan next weekWhat a miracle who knew so hang in ther you never know I really thought it was curtains for me but I thinkI can do obne day at a time you never know what will happen as long as you are poisitive and believe until the very end my mom dad and sister did and enjoyed life til the bitter end Meg Mac

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