anyone else stage IV

JmG86
JmG86 Member Posts: 53
edited March 2014 in Breast Cancer #1
Hi. I'm new to this site, so please bear with me if I mess up. Just wondering if anyone else is stage 4. I have been dealing with metastatic bc since 2003, and am doing really well. Just started Xeloda treatment today, and am wondering if anyone has any comments or advice?
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Comments

  • Jeanne D
    Jeanne D Member Posts: 1,867
    Hi JmG86 ☻
    I want to welcome you to the site and tell you that I am sure some bc survivors that are stage 4 will reply to you. I am stage 1, so, no help here. Sorry. I wish you the best of luck!

    Love, Jeanne ♥
  • m_azingrace
    m_azingrace Member Posts: 399
    I'm stage IV
    I was diagnosed in July this year. Click on my name, and it will take you to my blog. Since my dx is so much newer than yours, I probably don't have much to offer in the way of advice. Just want to say how sorry I am you are going through this. Hugs. Gracie
  • Alexis F
    Alexis F Member Posts: 3,598

    I'm stage IV
    I was diagnosed in July this year. Click on my name, and it will take you to my blog. Since my dx is so much newer than yours, I probably don't have much to offer in the way of advice. Just want to say how sorry I am you are going through this. Hugs. Gracie

    Just want to say hi to you
    Just want to say hi to you JmG and to welcome you to the board.

    Lex♥
  • pinkkari09
    pinkkari09 Member Posts: 877
    Hi JM
    I'm new to this too, I'm stage IIIC, (just under 4). I was diagnosed 8-18-09, so only had two treatments, however, there are many wonderful women on here, just hang on, someone will reply.
    Welcome aboard!!
    Keeping the Faith,
    Kari
  • JmG86
    JmG86 Member Posts: 53
    Jeanne D said:

    Hi JmG86 ☻
    I want to welcome you to the site and tell you that I am sure some bc survivors that are stage 4 will reply to you. I am stage 1, so, no help here. Sorry. I wish you the best of luck!

    Love, Jeanne ♥

    Thanks to you all for the
    Thanks to you all for the welcome...I can see this place offers a lot of support, and I'm looking forward to getting to know you all.
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Just a quick welcome to this
    Just a quick welcome to this amazing site. I don't have any advice but wanted to say "hi".
  • mimivac
    mimivac Member Posts: 2,143
    Welcome, JM
    And congratulations on doing so well. I cannot give you advice about Xeloda, but hopefully someone who has been through it can chime in. As you can see, there are several recently diagnosed stage IV women here. Because of your experience, you could probably give advice on aspects of survivorship yourself, too. Welcome to our community.

    Mimi
  • surfinbyrd2
    surfinbyrd2 Member Posts: 4
    stage 4 also
    yes, i am stage 4 also and just finished xeloda and ixempra treatments. Keep your skin especially your hands very moisturized, i had a horrible time with the skin on my hands cracking and splitting. It also turned the skin on my hands dark. I wasn't nauseated at all on the xeloda. if there is anything you would like to ask e mail me at [email protected] i have been on chemo since 2005 and have been on several different types. Lisa
  • chickad52
    chickad52 Member Posts: 497
    JM
    Just wanted to say welcome to the boards. I wish you well with your treatments. You will find lots of support here. Hugs, Diane
  • JmG86
    JmG86 Member Posts: 53

    stage 4 also
    yes, i am stage 4 also and just finished xeloda and ixempra treatments. Keep your skin especially your hands very moisturized, i had a horrible time with the skin on my hands cracking and splitting. It also turned the skin on my hands dark. I wasn't nauseated at all on the xeloda. if there is anything you would like to ask e mail me at [email protected] i have been on chemo since 2005 and have been on several different types. Lisa

    Thank you for answering - I
    Thank you for answering - I heard about the hands, were your feet affected too? And did you get mouth sores at all?
  • laurissa
    laurissa Member Posts: 773
    Hi
    I'm also new here. This is a great place to visit. I still don't know what stage and all the details of anything yet. I'll know Wednesday and the chemo plan. Good luck to you.
  • surfinbyrd2
    surfinbyrd2 Member Posts: 4
    JmG86 said:

    Thank you for answering - I
    Thank you for answering - I heard about the hands, were your feet affected too? And did you get mouth sores at all?

    xeloda effects
    yes my feet stay tingly but i keep lotion on them everyday and they have not split or anything like that. I lost my taste but am told it will come back. everything kinda taste like cardboard so i just add hot sauce.I have not had any mouth soreness at all. Hope this helps some....Lisa
  • roseann4
    roseann4 Member Posts: 992 Member
    Have 2 friends who are stage 4!
    I am stage 1 but have 2 friends who are stage 4. One has been stable for 7 years so far. She is estrogen and HER2 positive. Her secret is doing volunteer work, yoga, and going to her support group every other week. My other friend has just moved to stage 4 and is still struggling with the diagnosis. She has started chemo this week and is doing as well as can be expected. We all are in a support group with Dr. Bernie Seigel. He wrote, "Love, Medicine and Miracles" as well as several other books. He has a support program called ECaP which is national so there may be one in your area. Sorry, but I don't know much about treatment for stage 4 except that more and more women are living longer and longer. Where's the cure!!!

    Great to hear you are doing so well.

    Roseann
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    roseann4 said:

    Have 2 friends who are stage 4!
    I am stage 1 but have 2 friends who are stage 4. One has been stable for 7 years so far. She is estrogen and HER2 positive. Her secret is doing volunteer work, yoga, and going to her support group every other week. My other friend has just moved to stage 4 and is still struggling with the diagnosis. She has started chemo this week and is doing as well as can be expected. We all are in a support group with Dr. Bernie Seigel. He wrote, "Love, Medicine and Miracles" as well as several other books. He has a support program called ECaP which is national so there may be one in your area. Sorry, but I don't know much about treatment for stage 4 except that more and more women are living longer and longer. Where's the cure!!!

    Great to hear you are doing so well.

    Roseann

    My mom was dx stage 4 nine
    My mom was dx stage 4 nine years ago and was estrogen and progestine positive as well.

    Please know that it is not a death sentence. My mom's attitude has been one of the most important things in her fight along with prayer, and a good support system.

    This site is a great support system! You will find some awesome women are here. You are so not alone in the fight.

    She is taking Xeloda right now and the creams are important. Both her hands and feet have been extremely dry. Her feet have turned dark, but not her hands. Mouth sores haven't been a problem. She's experienced some nausea and swelling in her hands and feet, but we're not sure if it is caused by the Xeloda or something else.

    Don't give up!
    dh
  • JmG86
    JmG86 Member Posts: 53

    My mom was dx stage 4 nine
    My mom was dx stage 4 nine years ago and was estrogen and progestine positive as well.

    Please know that it is not a death sentence. My mom's attitude has been one of the most important things in her fight along with prayer, and a good support system.

    This site is a great support system! You will find some awesome women are here. You are so not alone in the fight.

    She is taking Xeloda right now and the creams are important. Both her hands and feet have been extremely dry. Her feet have turned dark, but not her hands. Mouth sores haven't been a problem. She's experienced some nausea and swelling in her hands and feet, but we're not sure if it is caused by the Xeloda or something else.

    Don't give up!
    dh

    Funny that you say "you are
    Funny that you say "you are not so alone in the fight". I know I am not alone (look at all the amazing people on this site!)...but sometimes I do feel very alone in my situation. I don't feel I can talk to my friends and family, because I think it makes them uncomfortable to talk about it. So I rarely talk about it. And I rarely say anything negative, even if I'm having a bad day - I don't want people to think I'm complaining. I'm normally a positive person, and things can always be worse, so I figure what right do I have to complain, and who wants to hear it anyway, right? So I am truly happy to have found this site, and see and hear other peoples stories!
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    JmG86 said:

    Funny that you say "you are
    Funny that you say "you are not so alone in the fight". I know I am not alone (look at all the amazing people on this site!)...but sometimes I do feel very alone in my situation. I don't feel I can talk to my friends and family, because I think it makes them uncomfortable to talk about it. So I rarely talk about it. And I rarely say anything negative, even if I'm having a bad day - I don't want people to think I'm complaining. I'm normally a positive person, and things can always be worse, so I figure what right do I have to complain, and who wants to hear it anyway, right? So I am truly happy to have found this site, and see and hear other peoples stories!

    Jm,
    You have every right to

    Jm,

    You have every right to complain, to lament, to scream, to cry. It's not fair, this whole cancer thing is not fair. And it's OK to lament and get it out of your system. There was a thread posted yesterday (I think?) about someone who wrote out their frustrations on plates and then threw them on the floor, smashing them. And there's healing in that. Get it out!

    Contact your local American Cancer Society to see if they can hook you up with a support group. For me, it's important to have at least one person in my life that I can be completely honest with ... my fears, my tears.

    Truly you have sisters on this site and you are not alone! :)

    Hugs,
    dh
  • RE
    RE Member Posts: 4,591 Member
    Glad you found us!
    Hello JM, I am glad you found this site as it can be such a great place to find caring support and some really great people. I was dx a stage 4 in 98 after having finished treatment for stg 2 in 97. I did a year of treatment and remained clean until 07 when what I was told was a totally different type of bc showed up in the other breast. I had a mastectomy and did 4 more rounds of chemo and have been fine ever since.

    In addition to the above my mom was a stage four when I was 17 (they called it terminal back then) and she lived another 26 years. She did have to battle cancer more, but between her battles she had a great quality of life!

    Sending cyber hugs,

    RE
  • roseann4
    roseann4 Member Posts: 992 Member
    JmG86 said:

    Funny that you say "you are
    Funny that you say "you are not so alone in the fight". I know I am not alone (look at all the amazing people on this site!)...but sometimes I do feel very alone in my situation. I don't feel I can talk to my friends and family, because I think it makes them uncomfortable to talk about it. So I rarely talk about it. And I rarely say anything negative, even if I'm having a bad day - I don't want people to think I'm complaining. I'm normally a positive person, and things can always be worse, so I figure what right do I have to complain, and who wants to hear it anyway, right? So I am truly happy to have found this site, and see and hear other peoples stories!

    Family has a tough time with living in the present.
    One of my friends (Stage IV) was visiting her family in England. They were eating strawberries and she said, "These strawberries are to die for!" She heard a gasp and everyone looked down. Those of us with BC, no matter what the stage have a different relationship with death. During the weeks of waiting, most of us did not know whether we were stage 1, 2, or 3. We will never look at life and death the same way again. Those who are currently "healthy" may be reacting to their own mortality which they have not yet had to face. I love the saying, "Enjoy today, life is shorter than you think." Another author once said, "It is only by accepting our death that we can truly experience life." I can't remember who wrote it but I have never forgotten it and think of it often.

    I think we need to keep our sense of humor and focus on today as that is all any of us has for certain.

    I'm so glad you are doing well.

    Roseann
  • meena1
    meena1 Member Posts: 1,003
    I was diagnosed last July
    I was diagnosed last July with Stage 4 breast cancer. I had mets to my spine and liver. My Pet Scan last month showed no abnormal activity. Where are your mets to? I thought Xeloda was for Colon Cancer.
  • JmG86
    JmG86 Member Posts: 53
    meena1 said:

    I was diagnosed last July
    I was diagnosed last July with Stage 4 breast cancer. I had mets to my spine and liver. My Pet Scan last month showed no abnormal activity. Where are your mets to? I thought Xeloda was for Colon Cancer.

    Xeloda is also for
    Xeloda is also for metastatic breast cancer. My cancer has spread to my spine, ribs, pelvic bones, etc. Luckily it has not spread to any of my organs! As I said, I am doing really well. And thanks to all of you for your support...I have to tell you, that strawberry story is such a great analogy for how people can react. I've had that type of thing happen when my brother was dying of colon cancer. So...on we go, we keep our sense of humor, and we keep up the good fight!