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African American Women & Triple Negative Status

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Comments

  • patoo
    patoo Member Posts: 5,243
    edited May 2011

    Hi all, good to see you all.  Happy that you all occasionally post here so we know how you are doing. 

    Blessings.

  • Lcharmie
    Lcharmie Member Posts: 156
    edited May 2011

    Thanks Indomitable1 ----great to be back.

    Congrats on your 2 years!!!!

    Rogam Congrats on your 3 years!!!!

    Ya just keep on holding on!!!

    Stay Blessed!!!!



    Linda C.

  • indomitable1
    indomitable1 Member Posts: 136
    edited May 2011

    Rogam-So sorry for the delay.  The conference actually starts today/tomorrow in Baton Rouge, LA. It ends on Sunday.   Check out the www.sistersnetworkinc.org website. They've got all the information. This is the 12th annual convention. I was somewhat reluctant to go secondary to costs but they sent out 2 emails re: scholarships. I applied and got one. (I think they were very generous secondary to all their sponsors.) 

     Will update you all on all the happenings of the conference sometime next week!

    Thanks Ilinda and Patoo. And Rogam, keep us posted on surgery and recovery (I may consider in the future...who knows!).

    God Bless! And new Sisters, please post, introduce yourselves, and let us know who else we are praying for!

  • rogam
    rogam Member Posts: 123
    edited May 2011

    I just checked out the sistersnetworinc site. What an amazing organization. Please keep me posted on upcoming events. I am so close to baton rouge could have made that trip. I will keep you guys posted on surgery. 2 more weeks till the big day.

  • patoo
    patoo Member Posts: 5,243
    edited May 2011

    Hi all.  Rogam, also click on the link to see if there is a chapter near to you.  It is really a great support group.

    Big HELLO to all my sisters.

  • JourneyNC
    JourneyNC Member Posts: 39
    edited May 2011

    Hello All,

    Long time since I've been on the site.  All is well with me finally got out of the fatigue stage...took long enough.  I gained 10lbs!!! I look humongous...don't know why, I eat healthier than before.  My thyroid and all internals are good.  I'm hiking and got to find a way to get this weight off.  Anywho Hope Everyone has a Blessed Sunday!!

  • indomitable1
    indomitable1 Member Posts: 136
    edited May 2011

    Hey Ladies, I am sitting in the Houston Airport waiting for my connexion.

    I can't say enough about the 12th Annual AA Breast Cancer Conference. Dr Lisa Newman, Dr. Edith Mitchell, and Dr. Weather,the President of the National Medical Association (the Black one, all presented. There were so many beautiful, strong, informed, empowered women in attendance. It was AWESOME.



    I am seriously looking into getting a chapter in my city and Have So Many offers of help. It was educational (Lymphedema to fertility to TNBC to Nutrition & exercise) and FUN (no tour and a dinner to ending singing and dancing to We are Family!) And a whole 'nother paragraph could be written about how God moved on the spiritual side. I was so impressed their mission of community education and outreach programs. I guess I had thought of it in as more of a traditional support group. Now I know, gand information is power.



    But, I'm done. Next year in Houston, combined with their annual Stop the Silence Walk. God willing, I will be there.



  • rogam
    rogam Member Posts: 123
    edited May 2011

    Sounds like you had a blast! I know that you working on getting a chapter in your city will be a blessing. Great job.

  • rogam
    rogam Member Posts: 123
    edited May 2011

    Sounds like you had a blast! I know that you working on getting a chapter in your city will be a blessing. Great job.

  • patoo
    patoo Member Posts: 5,243
    edited May 2011

    Indomitable1, so glad you had a great experience.  I passed on the opportunity to go this year, with much of the cost being picked up by my local chapter, partly because my vacation time for this year was pretty tightly booked.  I'm also an extreme introvert and don't do well in large groups.  I don't even get to the meetings here (5-10 mins from home).  I'm just not a big support group person but I do continue to refer people to them as I know they are effective in helping our sisters through. 

    The head of my chapter here is wonderful.  Let me know if you need her contact info in trying to start your chapter.

    Big HI rogam.

     JourneyNC, welcome to the weight gain club.  I think it's a side effect to BC, any type/any stage.  Continue to eat right and exercise and you should eventually see some results.  I've managed to lose and keep off about 25 lbs since Dec 2009.  Right now I seem to have hit a wall but then I did get off track with eating and exercise so now I'm back on track and expecting to lose more - goal is another 20 off.  Check out loseit.com, a free website where you enter your age, weight and goal.  Then daily it allows you so many calories based on that and you enter anything that crosses your lips and it counts the calories for you.  Entering in your exercise gives you more room to eat.  It's fun watching the bar go up and down (exercise makes it go down) and keeps you accountable to yourself.  It's a free online tool, give it a try.

  • rogam
    rogam Member Posts: 123
    edited May 2011

    Hello Ladies please send up prayers for me. Recon surgery is Wednesday in New Orleans.I will send an update ASAP.

  • patoo
    patoo Member Posts: 5,243
    edited May 2011

    Rogam - go with God - He's AWESOME and will be there for you.  Looking forward to a positive post from you.  HUGS.

  • Lcharmie
    Lcharmie Member Posts: 156
    edited May 2011

    Rogam,

    You are in my prayers---Be blessed.



    Llinda C.

  • rogam
    rogam Member Posts: 123
    edited May 2011

    Hello all I made it out by the grace of God. I have walked the hall 2x today. The care at Nola has been excellent.

  • patoo
    patoo Member Posts: 5,243
    edited May 2011

    Great rogam.  Glad to hear from you.  Hang in there.

    Blessings all.

  • indomitable1
    indomitable1 Member Posts: 136
    edited May 2011

    Glad to hear that all went well, Rogam!



    Patoo-all the ladies I met at the conference were wonderful! I have no doubt that your prez is too. Congrats on the weight loss! Keep it up! I have lost 15 since mastectomy (& 10 during surgery ;-) but I have been playing with the same 10 lbs for the past year. Ok got to get back on the exercise thread for real now. And thanx for the loseit.com tip. On my way there now.....



    Have a great holiday weekend, everyone! God bless!

  • patoo
    patoo Member Posts: 5,243
    edited June 2011

    Just want to say a big HI to all my sisters.

    Rogam, how are you doing?

  • rogam
    rogam Member Posts: 123
    edited June 2011

    Hello Ladies! Patoo I am feeling great....it has been 3 weeks today and I am up, driving and just relaxing! I will return to work in a few more weeks but all is well. I thank God for healing me so fast. 

  • patoo
    patoo Member Posts: 5,243
    edited June 2011

    All praises to our God - He is AWESOME.  Nice to be out on disability for a few weeks and still able to relax and do whatever you want. 

  • MariJohn
    MariJohn Member Posts: 3
    edited June 2011

    Hi all:

    I am brand new to this. I went in for Mammo mid-May and my life has been in turmoil ever since. First I was told DCIS (2cm).  After surgery turned out to be DCIS (3cm) with micro-invasion.  My final pathology report finally came in and the surgeon just called to tell my its triple-negative.  I am sick to my stomach and my head is spinning. I want to curl up and do nothing.  She also said she presented my case to a group and that the five (5) oncologists present all said they would no offer me chemo.  I have four children (20 yrs, 19ys, 9 yrs, and 2yrs).  As much as I am distraught over the triple-negative status I am terrified of doing this with radiation only and no chemo.  Any info/resources than anyone can offer will be most appreciated.  Blessing to all. 

  • patoo
    patoo Member Posts: 5,243
    edited June 2011

    Marijohn, not sure where you are but please check if you have a Sisters Network chapter near you.  Here's a link to the national and you can go to the 'chapters' page to check.  If not, click on my name, patoo, and at the top right you should see a link to send me a private message and I will give you a name and number of a great sister here in NJ who will walk this entire journey with you.

    You are not alone.  Please don't panic - the beginning of this journey is stressful.

    BIG HUGS.

  • patoo
    patoo Member Posts: 5,243
    edited June 2011

    Sorry, forgot to put the link:

    http://www.sistersnetworkinc.org/

  • MariJohn
    MariJohn Member Posts: 3
    edited June 2011

    Thanks, soooooo much.  I sent private message and will check out site now.

  • patoo
    patoo Member Posts: 5,243
    edited June 2011

    Just responded.  You will be in good hands.  Make sure you get a copy of your pathology report as it will come in handy as you go through this journey.  Dorothy will probably be able to help you understand it better as well as it's very hard to keep our mind focused early in this walk.  You can do this.

  • MariJohn
    MariJohn Member Posts: 3
    edited June 2011

    Thanks, I sent the email.  Will give her a ring tomorrow.  Now I try to sleep.  Unlikely.....

  • patoo
    patoo Member Posts: 5,243
    edited July 2011

    http://www.nih.gov/news/pr/dec2006/nci-19.htm

    I'm not triple neg but saw this on another thread and thought some here might be interested in looking at it.

    HUGS to all.

  • patoo
    patoo Member Posts: 5,243
    edited August 2011

    Long time no postings here.  Praying all is going well - no news is good news?

  • Lcharmie
    Lcharmie Member Posts: 156
    edited August 2011

    Hello ladies,

    I am  at the Library today and just want to say  hello and say Be Blessed to all of you, just know I miss everyone and pray for all of you. 

    Just letting ya know I am doing fine and enjoying the summer with only ever 3 weeks chemo, Herceptin.

    Hope all is well in everyones world as well as can be expected.  Keep hanging in there.

    Linda C

  • patoo
    patoo Member Posts: 5,243
    edited August 2011

    Hey Linda, thanks for stopping by and thrilled you are doing fine.  Will continue to keep you in prayer because we know that prayer works.

    HUGS everyone.

  • rogam
    rogam Member Posts: 123
    edited September 2011

    Hello Ladies.. All is well this way! Love ya all. Be blessed!!

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