update on Brenda3.16

amyb15
amyb15 Member Posts: 109 Member
edited March 2014 in Colorectal Cancer #1
hi everyone:
just thought some of you might like and update on my sister (Brenda) well.. things did not go as she had hoped. Xeleri did not work. Last scan showed progression of disease, with a substantial amount of progression in the liver. Onc. put her back on Folfox. She has gone through all of the standard treatments and is not a candidate for erbitux (SP?) (something to do with KRAS). She is tired much of the time. She is also jaundice (whites of eyes are yellow as is her skin) Biliruben levels are very high. PA was going to with hold chemo due to biliruben levels went from 6.2 on 12/1 to 13.3 0n 12/7. PA checked with Onc. and he said to go ahead with treatment as there were not a lot of options. Has anyone else had jaundice and high biliruben levels? She had chemo on 12/7 and went back to get an IV to prevent dehydration on 12/9/and 12/10. She is hanging in there and doing her best to stay positive. Any ideas or suggestions would be appreciated. Any prayers would be appreiciated too. Thanks. You guys are great :)

Amy

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #3
    Amy
    I'm so sorry to hear of the progression. Please give Brenda a big HUG and I will say prayers for her.
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    Amy:
    Thank you for sharing with the board the news you shared with me a week or so ago. As you know, I am so sorry the news could not have been better.

    Have you looked into the major cancer center yet? Perhaps the board could shed some light on a major cancer center and come up with a few names of doctors for you. A friend of George's (mid 40's) with Stage IV Rectal just met with some docs in Baltimore and were were very impressed. He has a pretty heavy load in his liver and is experiencing awful reactions with chemo. If you want me to get the name, etc. just let me know.

    I was recently reading, I don't know if it was here or Colon Club, that people who were not eligible for Erbitux in the past are now getting it, they combine it with something else. I don't think it was a trial but I'm just not sure. If I find it I will pm it to you or maybe someone reading this will have more info than I do. Send her oncologist a e-mail and have him check into it if you can't find more info on it.

    Hang in there, I know firsthand how tough that can be.

    Hugs - Tina
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #5
    Amy
    Thanks for letting us know how Brenda is doing. I am sorry the news isn't better. I hope they figure out a great plan for Brenda + that she will feel better. I have missed Brenda here.
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #6
    Amy
    Amy,

    I was hoping that Brenda would get a break. Know that I am keeping her and you in my prayers.

    Aloha,
    Kathleen
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #7
    Sorry
    I'm sorry the news was not good. Praying for a better outcome soon.

    *hugs*
    Gail
  • Aud
    Aud Member Posts: 479 Member
    #8
    Amy
    I'm so sorry to hear that your sister, Brenda, is not doing as well as you and she hoped. Let her know that she is in my prayers.
    Holding your sister in the Light for hope and healing.
    ~Aud
  • Nana b
    Nana b Member Posts: 3,030 Member
    #9
    Aud said:

    Amy
    I'm so sorry to hear that your sister, Brenda, is not doing as well as you and she hoped. Let her know that she is in my prayers.
    Holding your sister in the Light for hope and healing.
    ~Aud

    I'm so sorry to hear that
    I'm so sorry to hear that Brenda is not doing well. I hope they can help her soon. Please tell her to try and stay positive and talk to her ONC about diet and supplements.

    Hugs to you both!
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #10
    liver flush/detox
    Hi Amy,

    Thanks for updating us on your sister. I am sad to hear Brenda isn't doing well.
    If I were you/her, I'd google liver detox or liver flush. I would think just getting some of the bad stuff out of the liver might help with the jaundice. My thought is even if the PA or onc don't mention or recommend it, Brenda should do as much as possible to help her liver function. There's lots that can be ordered on the internet- it can be confusing I know & maybe she'd feel better under the guidance of a TCM specialist. Personally, I am planning on contacting one myself soon. I guess I just hesitate cause of needing to pay for it myself, but hey- it could save your life- nothing to lose especially if the chemo isn't doing it for her. Also- don't know if it's a scam or helpful, but I have now done a foot detox bath and figured it can't hurt & maybe it will actually help. Definitely at least tell her to take milk thistle- that is something that my onc actually did recommend, but I'd go farther with it than that- now is the time to take matters into her own hands!

    I will be praying for her health and encouragement- and you too, of course- thanks again for the update.

    Hugs,
    Lisa
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    #11
    lisa42 said:

    liver flush/detox
    Hi Amy,

    Thanks for updating us on your sister. I am sad to hear Brenda isn't doing well.
    If I were you/her, I'd google liver detox or liver flush. I would think just getting some of the bad stuff out of the liver might help with the jaundice. My thought is even if the PA or onc don't mention or recommend it, Brenda should do as much as possible to help her liver function. There's lots that can be ordered on the internet- it can be confusing I know & maybe she'd feel better under the guidance of a TCM specialist. Personally, I am planning on contacting one myself soon. I guess I just hesitate cause of needing to pay for it myself, but hey- it could save your life- nothing to lose especially if the chemo isn't doing it for her. Also- don't know if it's a scam or helpful, but I have now done a foot detox bath and figured it can't hurt & maybe it will actually help. Definitely at least tell her to take milk thistle- that is something that my onc actually did recommend, but I'd go farther with it than that- now is the time to take matters into her own hands!

    I will be praying for her health and encouragement- and you too, of course- thanks again for the update.

    Hugs,
    Lisa

    Thanks everybody. I didn't
    Thanks everybody. I didn't have it in me to post about myself for a while. You are all great. I am sitting on my couch, listening to Santa Craigs Cds looking at my Christmeas tree.

    As My sister Amy put xeliri didn't work so I am back to Folfox which I did in March 09 . The first treatment went well much more toleralbe for me than xeliri.

    I am really worrie about my high bilirubin numbers 14. Skin is tan, eyes yellow. Oncs hope is Folfox will get some cancer in liver and numbers will go down. I am praying that is what happens.

    Lisa 42. I did a foot bath last week. The water was black by the end. They recomened Milk Thistle supplements. I didn't get any. My onc is also against supplements with the chemo.

    Today I am going back for some iv fluids and hopefull 2n folfox on Mon. Brenda
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #12
    Brenda3.16 said:

    Thanks everybody. I didn't
    Thanks everybody. I didn't have it in me to post about myself for a while. You are all great. I am sitting on my couch, listening to Santa Craigs Cds looking at my Christmeas tree.

    As My sister Amy put xeliri didn't work so I am back to Folfox which I did in March 09 . The first treatment went well much more toleralbe for me than xeliri.

    I am really worrie about my high bilirubin numbers 14. Skin is tan, eyes yellow. Oncs hope is Folfox will get some cancer in liver and numbers will go down. I am praying that is what happens.

    Lisa 42. I did a foot bath last week. The water was black by the end. They recomened Milk Thistle supplements. I didn't get any. My onc is also against supplements with the chemo.

    Today I am going back for some iv fluids and hopefull 2n folfox on Mon. Brenda

    Brenda hope things goes better with folfox!
    I pray for that!
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #13
    Brenda3.16 said:

    Thanks everybody. I didn't
    Thanks everybody. I didn't have it in me to post about myself for a while. You are all great. I am sitting on my couch, listening to Santa Craigs Cds looking at my Christmeas tree.

    As My sister Amy put xeliri didn't work so I am back to Folfox which I did in March 09 . The first treatment went well much more toleralbe for me than xeliri.

    I am really worrie about my high bilirubin numbers 14. Skin is tan, eyes yellow. Oncs hope is Folfox will get some cancer in liver and numbers will go down. I am praying that is what happens.

    Lisa 42. I did a foot bath last week. The water was black by the end. They recomened Milk Thistle supplements. I didn't get any. My onc is also against supplements with the chemo.

    Today I am going back for some iv fluids and hopefull 2n folfox on Mon. Brenda

    sent you a PM
    Hugs to you my dear Brenda! I just sent you a PM...

    Lisa :)
  • sfmarie
    sfmarie Member Posts: 602
    #14
    Brenda3.16 said:

    Thanks everybody. I didn't
    Thanks everybody. I didn't have it in me to post about myself for a while. You are all great. I am sitting on my couch, listening to Santa Craigs Cds looking at my Christmeas tree.

    As My sister Amy put xeliri didn't work so I am back to Folfox which I did in March 09 . The first treatment went well much more toleralbe for me than xeliri.

    I am really worrie about my high bilirubin numbers 14. Skin is tan, eyes yellow. Oncs hope is Folfox will get some cancer in liver and numbers will go down. I am praying that is what happens.

    Lisa 42. I did a foot bath last week. The water was black by the end. They recomened Milk Thistle supplements. I didn't get any. My onc is also against supplements with the chemo.

    Today I am going back for some iv fluids and hopefull 2n folfox on Mon. Brenda

    Brenda
    Hugs and prayers for you! I am sorry to hear about this set back. I pray every day for you and your sister Amy. She loves you!

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