Breast cancer chat

sandi
sandi Member Posts: 1
edited March 2014 in Breast Cancer #1
Is there a chat room I can join?
«13

Comments

  • vino1112
    vino1112 Member Posts: 10
    #2
    I don't know, but we could email each other. I am 50 years old and was diagnosed 3 years ago. If you find a chat room, let me know. Otherwise send me messages over this service.

    Regards,

    Louise
  • lene
    lene Member Posts: 1
    #3
    vino1112 said:

    I don't know, but we could email each other. I am 50 years old and was diagnosed 3 years ago. If you find a chat room, let me know. Otherwise send me messages over this service.

    Regards,

    Louise

    I am new to this site and am from Canada.I would like a chat or an email from anyone interested in talking.
  • carolh
    carolh Member Posts: 18
    #4
    lene said:

    I am new to this site and am from Canada.I would like a chat or an email from anyone interested in talking.

    I'm in Vancouver. It's been nearly a year since my diagnosis. I have a modified radical mastectomy, followed by 6 months of chemo then 3 weeks of radiation. I'm now on Tamoxafin. I'm going for my first big check up next week. Any suggestions as to what questions I should ask?
  • denise
    denise Member Posts: 11
    #5
    carolh said:

    I'm in Vancouver. It's been nearly a year since my diagnosis. I have a modified radical mastectomy, followed by 6 months of chemo then 3 weeks of radiation. I'm now on Tamoxafin. I'm going for my first big check up next week. Any suggestions as to what questions I should ask?

    Hi, my name is Denise and we seem to be at the same place in treatment. I go for my big check-up in two weeks. I don't know what questions you should ask but if you would to stay in contact e-mail me back.
    Denise
  • carolh
    carolh Member Posts: 18
    #6
    denise said:

    Hi, my name is Denise and we seem to be at the same place in treatment. I go for my big check-up in two weeks. I don't know what questions you should ask but if you would to stay in contact e-mail me back.
    Denise

    Hi Denise, Thanks for your response. I had 1 node positive - how about you? I am very anxious
    about recurrence - what to look for, etc. Also, the side effects of Tamoxafin. Yikes, it's scary!
    Apart from the worries (!), I'm doing fine and feel quite well, back working full-time etc.
    I have two teenage daughters, 17 and 19. My husband has been my rock through all this s--t.
    I'd hate to do it alone, as I know many women do and my heart goes out to them. Tell me more
    about your experiences.
  • vino1112
    vino1112 Member Posts: 10
    #7
    carolh said:

    Hi Denise, Thanks for your response. I had 1 node positive - how about you? I am very anxious
    about recurrence - what to look for, etc. Also, the side effects of Tamoxafin. Yikes, it's scary!
    Apart from the worries (!), I'm doing fine and feel quite well, back working full-time etc.
    I have two teenage daughters, 17 and 19. My husband has been my rock through all this s--t.
    I'd hate to do it alone, as I know many women do and my heart goes out to them. Tell me more
    about your experiences.

    Hi Everyone!

    I will try to remember my questions and tell you a little about my experiences.

    Be sure to ask how long you will be on tamoxiphen and ask what side effects to expect. Also ask what can be done for the side effects. Ask about the benefits of tamoxiphen and about risk reduction of recurrence. You might ask about alternatives to tamoxiphen such as reloxaphene (sp?) and the recent studies that have been done on both.

    My experience on it (1 1/2 years) has been positive. Oh, the hot flashes were the pits at first, but are considerably better now. If you have not gone into menopause with the chemotherapy, you may with the tamoxiphen. There are things that can be given for hot flashes, medicines, soy, black cohosh, vitamin E, but ask your doctor about risks and benefits of each. I take a soy capsule and 800mg of Vitamin E. There are mixed opinions about this, but it has made the hot flashes tolerable. Mine initially felt like I was about to have a panic attack and then I got hot and sweaty on face and back. It lasted from 2 to 5 minutes and happened several times a day and night. Night was the worst because it woke me up. I didn't get much sleep for a while, but the Vitamin E and soy has helped a lot. The medicines didn't help me, but they might help you.

    I have heard some people retain water and gain weight, but I am not sure if these are because of the tamoxiphen or not. I have found that getting really involved with an exercise program has helped me tremendously both mentally and physically. I have gotten much stronger again and have kept my weight at a reasonable level after being sedentary for much too long! It has really helped in the self-esteen department too. I joined a small fitness center with personal trainers where I get a lot of help with particular physical problems like upper body weakness from the operation and working around my arthritis. That came on after the chemotherapy which I also understand often happens. I have both rheumatoid and osteoarthritis even tho' I am only 50 years old. I don't want to act older than I am, and this makes a remarkable difference!

    Best wishes to you both. Your friend,

    Louise
  • carolh
    carolh Member Posts: 18
    #8
    vino1112 said:

    Hi Everyone!

    I will try to remember my questions and tell you a little about my experiences.

    Be sure to ask how long you will be on tamoxiphen and ask what side effects to expect. Also ask what can be done for the side effects. Ask about the benefits of tamoxiphen and about risk reduction of recurrence. You might ask about alternatives to tamoxiphen such as reloxaphene (sp?) and the recent studies that have been done on both.

    My experience on it (1 1/2 years) has been positive. Oh, the hot flashes were the pits at first, but are considerably better now. If you have not gone into menopause with the chemotherapy, you may with the tamoxiphen. There are things that can be given for hot flashes, medicines, soy, black cohosh, vitamin E, but ask your doctor about risks and benefits of each. I take a soy capsule and 800mg of Vitamin E. There are mixed opinions about this, but it has made the hot flashes tolerable. Mine initially felt like I was about to have a panic attack and then I got hot and sweaty on face and back. It lasted from 2 to 5 minutes and happened several times a day and night. Night was the worst because it woke me up. I didn't get much sleep for a while, but the Vitamin E and soy has helped a lot. The medicines didn't help me, but they might help you.

    I have heard some people retain water and gain weight, but I am not sure if these are because of the tamoxiphen or not. I have found that getting really involved with an exercise program has helped me tremendously both mentally and physically. I have gotten much stronger again and have kept my weight at a reasonable level after being sedentary for much too long! It has really helped in the self-esteen department too. I joined a small fitness center with personal trainers where I get a lot of help with particular physical problems like upper body weakness from the operation and working around my arthritis. That came on after the chemotherapy which I also understand often happens. I have both rheumatoid and osteoarthritis even tho' I am only 50 years old. I don't want to act older than I am, and this makes a remarkable difference!

    Best wishes to you both. Your friend,

    Louise

    Thanks for the upbeat message, Louise. Glad to hear you're doing well. I hadn't heard about
    the possible link to arthritis with Tamoxafin (something else to look out for!). I've been using
    blackcurrant oil for hot flushes, and it works well for me (evening primrose oil did zilch). It was
    recommended by a naturopathic doctor I'm seeing. Best wishes to all. Carol
  • vino1112
    vino1112 Member Posts: 10
    #9
    carolh said:

    Thanks for the upbeat message, Louise. Glad to hear you're doing well. I hadn't heard about
    the possible link to arthritis with Tamoxafin (something else to look out for!). I've been using
    blackcurrant oil for hot flushes, and it works well for me (evening primrose oil did zilch). It was
    recommended by a naturopathic doctor I'm seeing. Best wishes to all. Carol

    Carolh
    I'd didn't mean to imply the tamoxifen was related to arthritis, but chemotherapy sometimes starts the arthritis process soon and perhaps more severe symptoms. Just wanted to correct any missimpression. Your friend,

    Louise
  • denise
    denise Member Posts: 11
    #10
    carolh said:

    Hi Denise, Thanks for your response. I had 1 node positive - how about you? I am very anxious
    about recurrence - what to look for, etc. Also, the side effects of Tamoxafin. Yikes, it's scary!
    Apart from the worries (!), I'm doing fine and feel quite well, back working full-time etc.
    I have two teenage daughters, 17 and 19. My husband has been my rock through all this s--t.
    I'd hate to do it alone, as I know many women do and my heart goes out to them. Tell me more
    about your experiences.

    Sorry it took me so long to get back to you. I didn't have any +nodes but I had my other breast removed. I have a sister who 3 years ago had the same thing and the DR.s told me my chance of getting it again were really high. I'm about 1/2 way through with the reconstruction. My husband has been a rock too. What would we do without them? I have a friend who went through this and she thinks her husband really let her down. Now that she finished with the chemo part, she has many bad feelings toward him. I have one son, Michael he is 20. He was out of the country during all my treatments. He's home now.
    My hair came back in real curly, how about yours? I still don't have very much eyebrows or lashes. How are you doing? I have some trouble mentally, worry that kind of thing. My year check up is on the 17, did you go to yours yet? How did it go? Glad to talk with someone with the same s--t going on. Take care
    Denise
  • Unknown
    Unknown
    #11
    lene said:

    I am new to this site and am from Canada.I would like a chat or an email from anyone interested in talking.

    This comment has been removed by the Moderator
  • vino1112
    vino1112 Member Posts: 10
    #12
    unknown said:

    This comment has been removed by the Moderator

    You bet I have felt like "all of this is unreal." I truly couldn't believe it was real for months. Unfortunately my ordeal went on long after the chemo was over, but hopefully it won't for you. Someday you'll hit the acceptance mode and it will be somewhat relieving. I don't even think about recurrences anymore. I have had so many MRI's and bone scans that I am reasonably certain that I don't have cancer now. However, I am going to all of my checkups, which are only once every 6 months now. It does get better.

    Your friend,

    Louise
  • vinnie
    vinnie Member Posts: 14
    #13
    lene said:

    I am new to this site and am from Canada.I would like a chat or an email from anyone interested in talking.

    Hi Lene:
    I am also new to this site and I am new to breast cancer. I am also looking to chat with others who are going thru or have gone thru treatment. If you'd like to chat or know of any other sites available, please let me know.
    Thanks
    Vinnie
  • vinnie
    vinnie Member Posts: 14
    #14
    unknown said:

    This comment has been removed by the Moderator

    Hi ellen:
    I'm also new to the site and to beast cancer. Why are you having another Lumpectomy. Did you have one and now found another lump?? Please explain.
    I haven't started any treatment yet, so I'm so
    new to all of this.
    Let me know how your feeling?
    Vinnie
  • Unknown
    Unknown
    #15
    vinnie said:

    Hi ellen:
    I'm also new to the site and to beast cancer. Why are you having another Lumpectomy. Did you have one and now found another lump?? Please explain.
    I haven't started any treatment yet, so I'm so
    new to all of this.
    Let me know how your feeling?
    Vinnie

    This comment has been removed by the Moderator
  • vinnie
    vinnie Member Posts: 14
    #16
    unknown said:

    This comment has been removed by the Moderator

    Hi Ellen:
    Sorry to hear that you had to go thru it again, but you sound as tho your doing well mentally, and that's a plus. Great that you and hubby are just hanging. Sometimes I love that much more than going away. (Quality time, I call it.
    Anyway, thanks for responding, enjoy your week off and keep in touch. Let me know how your feeling. Question: Why radiation and not chemo. Only because I'm not sure of the difference yet.
    vinnie
  • Unknown
    Unknown
    #17
    vinnie said:

    Hi Ellen:
    Sorry to hear that you had to go thru it again, but you sound as tho your doing well mentally, and that's a plus. Great that you and hubby are just hanging. Sometimes I love that much more than going away. (Quality time, I call it.
    Anyway, thanks for responding, enjoy your week off and keep in touch. Let me know how your feeling. Question: Why radiation and not chemo. Only because I'm not sure of the difference yet.
    vinnie

    This comment has been removed by the Moderator
  • mcgruff
    mcgruff Member Posts: 8
    #18
    carolh said:

    I'm in Vancouver. It's been nearly a year since my diagnosis. I have a modified radical mastectomy, followed by 6 months of chemo then 3 weeks of radiation. I'm now on Tamoxafin. I'm going for my first big check up next week. Any suggestions as to what questions I should ask?

    Hi Carol, First I am hopeing that the "first Big Check-up" was positive or is that negative in this case? Either way I hope it was good news. I am scheduled for a modified mastectomy in the next couple of weeks. Any advise? McGruff
  • vinnie
    vinnie Member Posts: 14
    #19
    unknown said:

    This comment has been removed by the Moderator

    Hi Ellen:
    I think last time I spoke to you, you and hubby were just going to veg for the week. Hope it was a good chance for you to just relax and spend quality time. Ellen, your very lucky to just have to take tamoxifen, but how do you feel on it. Any side effects? I've been chatting with Nancy also. I love being able to use e-mail to feel so close to so many women who understand, who've been there or are about to enter this scary road. The support and compassion that I'm
    receiving is a natural HIGH, I go thru my day anxious to get home and check my e-mail, or the discussion list. It's just great. And its especially great having friends like you and Nancy just a click away. Your in my prayers, God Bless, I'l speak to you soon.
    vinnie
  • Unknown
    Unknown
    #20
    vinnie said:

    Hi Ellen:
    I think last time I spoke to you, you and hubby were just going to veg for the week. Hope it was a good chance for you to just relax and spend quality time. Ellen, your very lucky to just have to take tamoxifen, but how do you feel on it. Any side effects? I've been chatting with Nancy also. I love being able to use e-mail to feel so close to so many women who understand, who've been there or are about to enter this scary road. The support and compassion that I'm
    receiving is a natural HIGH, I go thru my day anxious to get home and check my e-mail, or the discussion list. It's just great. And its especially great having friends like you and Nancy just a click away. Your in my prayers, God Bless, I'l speak to you soon.
    vinnie

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #21
    vino1112 said:

    I don't know, but we could email each other. I am 50 years old and was diagnosed 3 years ago. If you find a chat room, let me know. Otherwise send me messages over this service.

    Regards,

    Louise

    I was just diagnosed this last July, I had the mastectomy this last Aug. 23, Then a few days ago, I had to go back and have a little more cut off. I know that there is a lot of hope and that this is curable, but yes I do need to talk some time to someone who has been there.

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