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Breast cancer chat

sandi
Posts: 1
Joined: Jul 2000

Is there a chat room I can join?

vino1112
Posts: 10
Joined: Jul 2000

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
Posts: 1
Joined: Jul 2000

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

carolh's picture
carolh
Posts: 19
Joined: Jul 2000

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
Posts: 11
Joined: Aug 2000

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's picture
carolh
Posts: 19
Joined: Jul 2000

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
Posts: 10
Joined: Jul 2000

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's picture
carolh
Posts: 19
Joined: Jul 2000

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
Posts: 10
Joined: Jul 2000

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

mjdp2's picture
mjdp2
Posts: 142
Joined: Nov 2000

Louise,
How are they treating your rheumatoid and osteoarthritis. I seem to have devoloped pain in the joints of the hand that received the chemo. Did you get Adriamyacin, Cytoxan, and Taxol? It has been two yrs since chemo. Also do you get muscle pulls more frequently than before treatment? I noticed that whenever they try to find a vein in me to draw blood or start an IV they say my veins blow up as the chemo made them more brittle. My last visit I finally gave them my other hand after 6 tries, which you are not supposed to do so as to avoid lymphodema, but does anyone have the same problem? Margaret

rutaf
Posts: 23
Joined: Jan 2005

Soy is in the news as being controversial now. They are now saying not to eat things with soy in them. Who do we believe?

denise
Posts: 11
Joined: Aug 2000

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

soog
Posts: 5
Joined: Aug 2003

i was one node postive also. Please contact me. Like to share our stories.

mcgruff
Posts: 9
Joined: Sep 2000

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

soog
Posts: 5
Joined: Aug 2003

i was diagnosed just 8 weeks ago. Please contact me. want to share stories.

vino1112
Posts: 10
Joined: Jul 2000

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
Posts: 14
Joined: Aug 2000

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

vinnie
Posts: 14
Joined: Aug 2000

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

vinnie
Posts: 14
Joined: Aug 2000

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

carla
Posts: 5
Joined: Oct 2000

Hi, I sure feel like a day time soap opera so I
do understand how you feel. Good luck!!

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

hi, my name is susan, and i just had a partial mastectomy and axillary dissection six days ago. lobualr carcinoma. no path report from surgery yet. can anybody tell me whe i can expect these incisions to heal, and for my arm to feel fairly normal again?

vinnie
Posts: 14
Joined: Aug 2000

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

murphy
Posts: 45
Joined: Sep 2000

Your right, there is HOPE and it is curable. I have been there, surgery in July of 1999 and chemo from Aug 1999 till Jan 2000 and enjoying life to the fullest. Stay positive and I wish you all the best. Martha

soog
Posts: 5
Joined: Aug 2003

i am 46, diagnosed eight weeks ago. Like to hear from you.

shemiya
Posts: 17
Joined: Aug 2003

I had a mastectomy 8/5/03. They tried twice for clear margins but never got them. The surgery was not that bad not much pain at all. The healing process takes awhile > It has been 1 month today and It is uncomfortable. The skin is tightening up. I have a port put in Thursday and start chemo Next Tuesday. I am dreading that more than anything but I have to do it for peace of mine that I have done what I can to keep it from returning . I am not a candidate for Tamoxifen because my was er and pr negative .Wish you the best of luck .I just turned 65
Betty

Arg
Posts: 5
Joined: May 2004

Hello Louise
I am MaryBeth, and new here, trying to find my way around this site.
I am 49 and a seven year survivor of BC

cruf
Posts: 931
Joined: Oct 2000

MaryBeth! Just wondered if you noticed the posts you were responding to are dated 2000, 2003 and 1in 2007. If the website you're looking for isn't there, it's because those were old posts. Hope you find what you're looking for. HUGS!! Cathy

Arg
Posts: 5
Joined: May 2004

thank you for letting me know, I am trying to find my way around this site.

Arg
Posts: 5
Joined: May 2004

Hello Cruf
I go into Discussion boards and then, all I see is chatroom blogs. There is something I am doing wrong. any Idea

mmontero38's picture
mmontero38
Posts: 1523
Joined: Dec 2007

Arg don't click on discussion boards. There is a line that says chat room click on that.

Arg
Posts: 5
Joined: May 2004

Hello MMontero

I keep trying to get into a chat. Where is the chat room subject supposed to be located?

mmontero38's picture
mmontero38
Posts: 1523
Joined: Dec 2007

ARg, you need to have Java on your computer for the chat room to work. Download Java, and then after you sign in click where it says chat room and you will get in.

jackies
Posts: 30
Joined: Sep 2000

Hi all. My name is Jackie. I'm brand new to CSN, and I just created my web page today. For anyone interested in a live chat, Oncology.com has chat rooms for cancer patients and their families. There must not be many people who know about it, because I have rarely been on when there was some one else to chat with. Maybe several of us could meet there from time to time.

Arg
Posts: 5
Joined: May 2004

Hello, I will try that chat room

TY

leeleewanna
Posts: 5
Joined: Oct 2002

Americn Cancer Society has a chat room, just go into discussions and chats and follow the info, hope to see you there !

babs49242's picture
babs49242
Posts: 197
Joined: Jan 2006

Hi sandi! Don't know if found a BC chat yet...but I go to http://chatshack.net/hiyawaka on Tuesday nights 9pm est...
Cindie

ladybug22's picture
ladybug22
Posts: 647
Joined: Sep 2008

yes ther is on home page under the discussion board great chat room

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