Hi, new to this site. Need advice

khl8
khl8 Member Posts: 807
edited March 2014 in Colorectal Cancer #1
Hello,
i am new to this site and am amazed at all the people that are supportive, I have been on another site since my diagnosis, blogforacure. They have helped me as well as I struggled through this past year.
I was diagnosed with rectal cancer last year Novemeber 2008. I have been through alot, 28 radiation treatments along with Xeloda for the 28 days. Then a colon resection and hysterectomy along with a temporary illeostomy, then 9 Folfox treatments and finally an illeostomy reversal this past September.
I maaged to get thorugh all that, no nauses, no hair loss, however I was left with neuropathy in my hands and feet. And they say there is nothing they can do, no meds or anything.
Any suggestions?????
Kathy

Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #2
    Time heals all wounds.... :oD
    Hi Kathy and welcome!

    I completed FOLFOX in mid August and my neuropathy worsened about a month after tx ended and then leveled off. I DO think I'm starting to notice some improvement, tho.

    From what my onc said and what I've read here and on Colon Club hot link , this can last a year or so. I read today that chemo brain can last 2 full years and a small number of people never 'unfog'.

    Welcome and best of luck!

    Diane
  • khl8
    khl8 Member Posts: 807
    #3
    dianetavegia said:

    Time heals all wounds.... :oD
    Hi Kathy and welcome!

    I completed FOLFOX in mid August and my neuropathy worsened about a month after tx ended and then leveled off. I DO think I'm starting to notice some improvement, tho.

    From what my onc said and what I've read here and on Colon Club hot link , this can last a year or so. I read today that chemo brain can last 2 full years and a small number of people never 'unfog'.

    Welcome and best of luck!

    Diane

    You are so right

    Thanks for the welcom!
    My neuroprathy kicked into high gear about a month after the last treatment too. Last Folfox was in August, then Bam it hit.
    I do have the chemo brain as well.
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    Welcome
    Welcome to the board. My hubby is fairly new to this and like you is suffering from the neuropathy. He just completed his first round of the whole Folfox/Avastin thing. I don't have any suggestions and just wanted to say hi and welcome - Tina
  • lmliess
    lmliess Member Posts: 329
    #5
    geotina said:

    Welcome
    Welcome to the board. My hubby is fairly new to this and like you is suffering from the neuropathy. He just completed his first round of the whole Folfox/Avastin thing. I don't have any suggestions and just wanted to say hi and welcome - Tina

    Neuropathy
    I completed chemo in September and the neuropathy kicked in the middle of November. Weird. but i started taking L'Glutamine and B6 again so that might help!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Welcome
    I welcome you to the board and so sorry that you had to find us. I know that your first post was on my message post so I thank you for posting your support to a person you don't know and a board you just joined. You are going to be a big part of a new family here and we will be here to support you any way you need. As this is a board that covers many situations, including the intimacy. I see you had an ileostomy too.

    I have been taking B6 for my neuropathy but I agree that it has gotten worse since I discontinued chemo in September. Even my fingers started bothering me this past week, but I'm not sure if that isn't related to the cold weather. I'm not sure what to tell you about your hands and feet because I am struggling as well.

    Hope you find an answer and if I do I will post it here. Again, welcome to our group.

    Kim
  • khl8
    khl8 Member Posts: 807
    #7
    Annabelle41415 said:

    Welcome
    I welcome you to the board and so sorry that you had to find us. I know that your first post was on my message post so I thank you for posting your support to a person you don't know and a board you just joined. You are going to be a big part of a new family here and we will be here to support you any way you need. As this is a board that covers many situations, including the intimacy. I see you had an ileostomy too.

    I have been taking B6 for my neuropathy but I agree that it has gotten worse since I discontinued chemo in September. Even my fingers started bothering me this past week, but I'm not sure if that isn't related to the cold weather. I'm not sure what to tell you about your hands and feet because I am struggling as well.

    Hope you find an answer and if I do I will post it here. Again, welcome to our group.

    Kim

    Thanks
    Thank you everyone for the welcome! I am so encouraged by reading all your stories and although I don't like the "cancer club" that I have had to join, but the other members are wonderful.
    I have been lucky in my treatment and hope to stay that way. I do need to know though, NED? is that an acronym for No Evidence of disease?
    Kathy
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #8
    khl8 said:

    Thanks
    Thank you everyone for the welcome! I am so encouraged by reading all your stories and although I don't like the "cancer club" that I have had to join, but the other members are wonderful.
    I have been lucky in my treatment and hope to stay that way. I do need to know though, NED? is that an acronym for No Evidence of disease?
    Kathy

    Yes. Ned means no evidence
    Yes. Ned means no evidence of disease. that is what I am shooting for.

    Good luck!
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #9
    jmaddox915 said:

    Yes. Ned means no evidence
    Yes. Ned means no evidence of disease. that is what I am shooting for.

    Good luck!

    Now Guys and Gals ,
    everyone knows that NED has 2 different meanings..
    1. No Evidence of Disease
    2. Naked Estatic Dancing
    and the second happens right after the first one is heard
  • khl8
    khl8 Member Posts: 807
    #10
    Buzzard said:

    Now Guys and Gals ,
    everyone knows that NED has 2 different meanings..
    1. No Evidence of Disease
    2. Naked Estatic Dancing
    and the second happens right after the first one is heard

    NED
    Now this is priceless!!!!!!!! Laughing my butt off.
  • Shayenne
    Shayenne Member Posts: 2,342
    #11
    khl8 said:

    NED
    Now this is priceless!!!!!!!! Laughing my butt off.

    Hiya Kathy!!
    I just came to say Hello and Welcome to a wonderful family!! I hope you like it here, and post away! I haven't been on Folfox at all, I'm on Folfiri, so no experience with neuropathy yet, but you never know, they can put me on it as well! But so glad to meet you!

    Hugsss!
    ~Donna
  • khl8
    khl8 Member Posts: 807
    #12
    Shayenne said:

    Hiya Kathy!!
    I just came to say Hello and Welcome to a wonderful family!! I hope you like it here, and post away! I haven't been on Folfox at all, I'm on Folfiri, so no experience with neuropathy yet, but you never know, they can put me on it as well! But so glad to meet you!

    Hugsss!
    ~Donna

    Thanks
    I am really glad to be here. Note I put a pic of myself. This was taken 3 months before my diagnosis. My 17 year old son had a wish from the make a wish foundation and wanted to go to Hawaii. He has Cystic Fibrosis, so I have to be healthy for him.
    Kathy

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