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arleneb
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Topic: Support Groups Posted: Jan 15 2010 at 11:29am |
In partnership with CancerCare, we are
very excited to offer online and telephone support groups for those diagnosed
with Triple Negative Breast Cancer. Each group will be moderated by a
professional oncology social worker and will be 12 weeks in duration. Please
email us your contact information and your group preference (online or
telephone) at moderator@cancercare.org.
Edited by ArleneB - May 16 2010 at 9:51am
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mainsailset
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Location: Washington State
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Posted: Jan 16 2010 at 11:24am |
Hi Arlene, I just signed up but I'm wondering how this will work. Are you trying to set up conference calls where members can call in with questions or are you planning on the social worker working off topics each time with a discussion then opening up for questions?
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dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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arleneb
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TNBC Foundation Administrator
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Posted: Jan 16 2010 at 5:14pm |
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Hi! CancerCare is managing the support groups and they will contact you soon with more information.
- Arlene
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cubby
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Posted: Jan 22 2010 at 8:05pm |
Hello Arlene B. I was diagnosed with breast cancer in Nov 2009. On December 14 2009 I had a modified radical mastectomy on my left breast. My oncologist told me on Jan 21, 2010 I had triple negative breast cancer and had a 6.5 mil. nodule in my lower lobe. I am going for a needle biopsy on Monday Jan 25. I have not been staged or told what chemo I am going to receive. I do know that it will be once every 3 weeks for 6 monts.
I am really scared and confused. It seems that every time I turn around I am given bad news (worst case scenaro) My husband researches everything even mentioned in the reports and the tells me even worse news. He thinks I should know everything he researched so I will be prepared to receive bad news.
I have post traumatic stress disorder and suffer from major depression. I have been treated for 10 years and still take 5 antidepressents and 2 anti anxiety meds. So, I get freaked ou in the doctors office. My husband trys to talk to the doctor and explain to me simply in the office. However, he and I hear different things. So I am living with a man who prepares for the worst but is happy when everthing holds out. I am feeling desparate, sad and alone.\
I have a strong relationship with God. He encourages me. I feel relaxed and great after church, prayer, devotional time and in my ladies bible study group. Then I come home and he starts the same bad news again. I need some hope and help in dealing with my husband. He was very hurt when I told him how I felt.
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123Donna
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Location: St. Louis, MO
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Posted: Jan 22 2010 at 8:45pm |
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Hi Cubby,
Glad you joined and you'll find some great support from this forum.
I'd like to make one suggestion. Can you repeat your post under TNBC
Forums - Welcome From TNBC Foundation? You can copy and paste it. More of the members will see that post and reply to you.
It's very difficult to tell others, especially your husband, how much information you really can handle. Some people want to know every little detail and news and others prefer not to know. There is nothing wrong in either scenario. It's how we cope with the situation. It's OK if your husband is researching as much information on your disease, but he needs to understand the limits of what you want to know. It's OK to say you don't want to hear anything at this time and you'll let him know when you're ready to talk about it. He may be hurt at first, but hopefully when he understands that the information is doing you more harm than good, he'll keep things to himself.
Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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pmg1959
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Posted: Jan 22 2010 at 10:24pm |
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hi i have triple negative breast cancer and having a very difficult time i have been taking kemo and still am i can't eat anything i have loss 2 ilbs which i could not afford and in the hosptial every 2 weeks getting blood. i am at loss for not one i know has this. what are my chances with this.
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Carol (Tenn)
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Posted: Jan 22 2010 at 10:45pm |
Dear Cubby and Pmg,
Welcome to you both. You will both be surprised by the loving care and understanding and encouragement that you will receive here.
Go to this website and look at the brochure that's there explaining all this. You can even order your own...it's..... www.lbbc.org
Also, on the main page of this site is an explanation of the type of bc we have.
This sub/type of breast cancer is comparatively rare. That's why you haven't heard of it. The foundation and each one of us here are trying to get our story out. Most doc's don't even share the diagnosis. Mine didin't. Just said I was er- pr- her2- and very aggressive. I found out myself that it had a name!
Everyone is different as far as side effects. One will have a terrible time while other breeze through. No set pattern. As far as longevith is concerned, again we are all different. Some here are 4, 5, 10 years out and longer. I think there is someone here at 20 yrs. But don't think about that...just keep focused on today.
Please join us at our Spiritual Support thread as well.
Love and Prayers,
Carol 
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St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13
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arleneb
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Posted: Jan 23 2010 at 9:52am |
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Cubby and PMG, Welcome! We're glad you found us but sorry you had to look for us to begin with. You have found the most supportive community available for people battling TNBC. As Donna mentioned, we encourage you to re-post your comments under the "Welcome to TNBC Forum" section or TNBC Talk where more people are likely to read your comments and reply to your questions. Also, please visit the "Resources, News and Tips" area for a wealth of information on TNBC.
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trip2
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Posted: Jan 23 2010 at 6:15pm |
Hello and welcome to you both.
We look forward to hearing more about you as you learn. This forum has been like a miracle handed to us in itself.
Please check out the other forums to post as suggested and if either of you have family history you might consider visiting with a certified genetic counselor to see if you qualify for genetic testing for the brca 1/2 mutations. Many brca 1 women have TNBC but most TNBC do not.
Best wishes to you both,
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Stage 2 2003
Stage 1 2007
BRCA 1+
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trip2
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Posted: Jan 23 2010 at 6:17pm |
Arlene,
This is wonderful that Cancercare is offering this to patients. Thanks so much for letting us know. Some need this in dealing with this disease.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Lillie
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Posted: Feb 03 2010 at 12:05pm |
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Hello Cubby and pmg1959,
I have started a thread in the "Welcome New Members" forum of this site. It is titled ?Calling Cubby and PMG1959.
Please go onto that thread and post your messages.
We will be waiting to help in any way we can. I guarantee you that many ladies on this site will identify with you totally.
Love in Christ,
Lillie
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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TNBC Advocate Texas
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Posted: Mar 01 2010 at 11:33pm |
Are you taking Zofran 8 mg pills every 6-8 hours? Zofran is wonderful as it does not cause drowsiness or side effects. Also, Protonix or Nexium 40mg acid reducer when you first wake up works well in combination with the Zofran to keep the nausea down so that you can eat. Biotene toothpaste helps to keep mouth sores away and make the taste in your mouth better.
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kristy
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Posted: Mar 11 2010 at 1:39pm |
Hi, I just found this site and am so excited! I am 44 and was diagnosed with TNBC on Oct. 8, 2009. I do not know one other person with TNBC. It is so nice to feel like there are others out there with the same thing. I have had lumpectomy, mammo-site radiation, and am currently doing chemo. I finished 4 cycles and thought I was done, but my oncologist said she went to a conference and they recommended 6. I have one more to go. My tumor was 1.2cm and they removed it with clear margins, lymph nodes clear. So, after I finish chemo, I cant wait to sprout some hair. I have heard there are some things that will make it grow faster. When? Ovation? and even a supplement. Anybody tried any of these products? Had any luck? By the way, I have a 15 year old son, and 10 year old daughter. So for the person questioning chemo, that was my reason..s. I will do everything I can to make sure I am here for my wonderful children. My husband is pretty cool too!
Kristy
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Carol (Tenn)
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Posted: Mar 11 2010 at 4:23pm |
Welcome Kristy,
It's always good to welcome new members. It's sad that you need us though. But we are all in this together. You are not alone. We are in varying stages of treatment, of varying ages, (I'm 68), varying side effects. If we can help in anyway, just let us know. If you feel you might need some Spiritual Support, we have that too. There are so many loving, caring, knowledgeable people here. Sometimes we vent, sometimes we praise, sometimes we just share. Again, welcome
Love and Prayers,
Carol
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St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13
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wendywoo
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Posted: Mar 15 2010 at 6:06am |
ADVICE NEEDED PLEASE
Dec 09 i had a lumpectomy left breast and all nodes removed whiuch were clear, tumour was 25mm so quite small, it was a grade 3 and had vascular spread but it hadnt spread out of itself (it that makes sense). I have only recently found iot was TNBC although I was told by oncologist it wasnt receptive to the 3 hormones, she didnt expand and i initially declined chemo thinking i had had a lucky escape!!! I also had my genes trested for BRAC1 and 2 because sister had breast cancer at 28, died at 38 and aunt had ovarian cancer died at 59. Have spoken to sisters husband whi said she was given pills and he thinks she was hormone receptive, but this was the 90s so i am not so sure - she had double mastectomy but no node removal (they didnt then), then it came back in her nodes, then came secondary in her bones.
Genes test says i DONT have the BRAC1 or 2 gene but i do have TNBC - what does this mean? Am i still in danger or does this put me as a unlucky person but i am ok for the future? Am off to oncologist today and she is going to get it from me, cos all of their publications is all about Hormone Receptive Cancer and she doesnt even tell you wat TNBC is or what it means - i am expecting a row today. but i need to lknow what it all means for me in the bigger scheme of things - also i have a dfaughter who is nealry 18, does she need to be worried as well.
thanks - love n light to you all xx
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Carol (Tenn)
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Posted: Mar 15 2010 at 6:16am |
Wendy,
Breathe...you will be fine....and my doc did the same thing....
You will find a brochure there that you can download and take it with you today or just read it on the site. It a wonderful source to answer your questions...
I know you tumor was small but you also have TNBC and it is aggressive. You will probably be asked if you want to do chemo or just radiation. I would go for the whole bit. That way you know that you did all you could to keep from having a recurrence. The recurrence factor is the biggy with tn. And it's random, there's no criteria for whether you will have one or not.
There will others that are more knowledgeable than I, but I think on this we all agree.
Love and Prayers,
Carol
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St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13
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123Donna
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Posted: Mar 15 2010 at 6:47am |
Wendy, When I convert 25mm, I get 2.5 cm. If this is correct, I'd definitely talk to your doc about chemo. You may need to see if you can find a specialist who knows more about TNBC. http://www.lbbc.org/data/media/LBBCunderstandtriplenegative.pdfI don't know what it means for testing negative for the BRCA gene, but
have a family history of breast/ovarian cancer. There could be other
genes we're not aware of when you see a higher occurrence in certain
families. The good news is your negative for the BRCA gene. Please let us know what your doctor recommends.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Carol (Tenn)
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Posted: Mar 15 2010 at 6:51am |
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Thanks Donna, I don't do metrics well.....but the advice is the same...Go For It!!
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St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13
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Ranee
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Posted: Apr 06 2010 at 6:14pm |
Hi,
My name is Ranee. I am 54 yrs old and found out January 12th I had a highly suspicious mass in my right breast. I am now post lumpectomy and lymph node dissection. Pathology has show two positive nodes-the sentinal and one other (20 were removed). Yesterday I received the information I have Triple Negative breast cancer. I was in shock yesterday--will never forget the doctor saying -prognosis poor-.
I work in the medical field and began searching the web about this and hysteria soon began to grow. Being told you have breast cancer puts you in your own little world. TNBC takes the air out of that world. Holy crap I am scared. I am numb one moment, tearful the next. I feel alone in this even though my support staff is in red alert. I see the onc. next week but until then (and probably even after then) I will be in total overwhelm. What can I do today to quiet the screaming voices in my mind that are saying you are going to die--soon!!! I am white, middle age....how did this happen??? 
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Carol (Tenn)
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Posted: Apr 06 2010 at 6:36pm |
Hello Ranee,
Welcome to our community of loving caring knowledgeable people.
First, you are not going to die soon. So relax...breathe deep...clear your mind of all unsettling thoughts and focus on your treatment.
Second, tell us how big your tumor was.
When is your appt with onc? In the resource section there is a list of question you can ask.
Also, tnbc is treatable. Chemo works best on tnbc followed by radiation.
There are some members here who are a lot better equipped to answer your questions. They do a lot of research and know a lot. I am not good at that. I feel my calling here is to add spiritual support to the mix.
You might want to move this post to the New Members forum or to the TNBC Talk forum. It might get read quicker.
If there is anything I can do to help you just let me know. I will have my 2nd year as a survivor on the 17th of June.
I am 68 years old and that is out of the norm as well.
TNBC is a random devil....but just remember, we are all in this together and we will beat it down.
You are with friends, you are not alone!! This is the place to vent, to cry, to laugh, to shout victory after victory.
Love and many Prayers,
Carol
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St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13
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