Hello
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Topic: Hello
Posted By: JaneRA
Subject: Hello
Date Posted: Jun 03 2007 at 7:46am
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Just found this site.
I was diagnosed triple negative in October 2003 and have been trying to raise the profile of triple negs in the UK since then.
I'm 58 and white but know full well that triple neg is more common among younger women and women from Afro Caribbean origins. I think its shameful that there has been so little research on triple negative breast cancer.
I was treated with 6 cycles AC chemo, then had mastectomy and node clearance (23 nodes with cancer) and 4 cycles of taxotere. Finished treatment in August 2004 and was well until 6 weeks ago when found lump above my shoulder bone. Have been diagnosed with Stage 4 chest wall and superclavicular spread; surgery and rads not possible. No spread at moment to lungs, liver, bones. Currently doing chemo combo of navelbine and xeloda. Very few options if this fails: probably cispaltin or carboplatin plus gemzar.
I know a lot of women in UK with trip negative bc and will tell them about this site.
best wishes
Jane ------------- Jane |
Replies:
Posted By: trip2
Date Posted: Jun 04 2007 at 4:53am
| Hi Jane, it sounds like you're having a bit of a rough time right now but keep that chin up, it seems to me they are coming up w/more for the triple negs, I think this is very hopeful. |
Posted By: JaneRA
Date Posted: Jun 04 2007 at 5:40am
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Hi trip2
You'll soon get used to me I hope...I'm a realist through and through and calls to keep my chin up or my thoughts positive really grate..sorry. Very Bristish sense of humour here. But I'm a great fan of Musa Meyer's work on cancer.
What precisely are the the things you think 'they' are coming up with for triple negatives? I'd love to know.
Hope for me is about hoping the present chemo can give me a partical remission, hoping that I can use the time I have best I can.
very best wishes
Jane ------------- Jane |
Posted By: sammyh
Date Posted: Jun 04 2007 at 10:45am
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Hi,
I'm one who has followed the trail from Jane from the uk (thanks Jane) I was dx last year when i was 36 weeks pregnant, induced and had a wonderful healthy boy (harvey). Had chemo first to shrink a large (7cm) tumour- ac then taxotere, then had wle (wide local excision) as chemo had shrunk lump to a mere2.5 cm! Had radio to finish. Not sure about Janes sense of humour (joke!) but she is a fount of knowledge to us triple negs Looking foward to meeting you all xxsam |
Posted By: Tina Belle
Date Posted: Jun 04 2007 at 12:50pm
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Hello ladies,
I live in Georgia. I'm also a white 41 year old very healthy women who was dx with triple neg idc bc in april 06. I had 4 months of chemo to shrink it and had a lumectomy and rads. My bc came back in both lungs and a lymph node. I'm starting xeloda on Tuesday and avastin in two weeks. I also lost my job of nine years this week. The boutique went out of business. I look forward to popping onto this site everyday. I have two daughters and a wonderful supportive husband of 18 years. |
Posted By: CalGal
Date Posted: Jun 04 2007 at 2:02pm
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Hello All - Thought I'd introduce myself ... I'm CalGal. It's great to find a site devoted to us triple negatives. Here's my saga ... 8/2004 - Dx'd with 2.2 cm tumor as a 41 yr old newlywed. 9/2004 - Bi-lateral lumpectomies (invasive on left, DCIS on right), SNB (all clear). 11/2004-12/2004 - 38x radiation. Was borderline, but passed on chemo due to clear nodes and wanting kids. 10/2005 - 2nd post-lump mamm fine (later found they missed the lump). 11/2005 - First pregnancy ends in a miscarriage. 12/2005 - Dx'd with recurr bc, mets to liver, unrelated renal cell carcinoma (kidney cancer). 2006 - The year of chemo. Also found out I'm positive for BRCA1 (and have to worry about ovarian cancer among other things). My HMO proposed 4 AC and then 4 Taxol. From my research, I could see that this was standard (the same thing for post-menopausal, hormone receptive pos, early stage bc) ... nothing special for a triple negative with mets. Instead, I did a lot of research and had 2nd and 3rd opinions. I did 6 dose dense AC. My breast tumor was gone after 3 AC! My liver mets shrunk. Liver mets finished off with radio-frequency ablation (RFA)! Been NED since then - 6/30/2006! As an added precaution, did 5 Taxotere & Carboplatin. 3/2007 - RFA of kidney cancer. In April, my husband and I celebrated our 3rd anniversary. He's been great. I couldn't ask for more ... I'm on a medical leave from work and consider my job to be a medical researcher (BRCA1, triple negative, liver mets and kidney cancer) and project manager of my health care. I've attended conferences for the Metastic Breast Cancer Network, FORCE (for those BRCA1 and 2, and otherwise at high risk for bc and oc), post at bco and FORCE, occasionally participate in conference calls with the YSC as well as attend a group for women with mets. I really like the idea of a site for those of us who are triple neg's! CalGal |
Posted By: Leigha
Date Posted: Jun 05 2007 at 5:04am
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Hello, I just found this website. It's great to have a place to share information about being a triple negative! I'm 33 Chinese-American and had been diagnosed October 2006 with stage IIB, had left mastectomy in November, and started my chemo January 2007. Thankfully, I had 1 lymph node out of 8 that was affected and did not require radiation. I was give the option to partcipate in a clinical with Avastin at the time, but decided to opt out because of my body's sensitivity to drugs. I'm undergoing the standard AC and Taxol dose dense regimen. I did the AC every 2 weeks and was put on Taxotere. The Taxotere cause my hands and feet to swell, peel, and look like they were scalded and left me incapacitated for 2 weeks. So, I was taken off that and put on a 12 week regimen of Taxol. Do you know if this will affect the outcome of reoccurences? I will finish my chemo by the end of this month - hooray!  I was told that I would be following up with blood work instead of scans. Is that common for anyone of you? It was recommended that I consider genetic testing for BRCA1 & BRCA2 because of my age with the triple negative. Did anyone have any issues with it because of being put in a high risk pool or potentially rejected for insurance? Regards, Leigha in Texas |
Posted By: Oneita
Date Posted: Jun 05 2007 at 6:00am
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Greetings,
I found my lump Aug.17,2004. Had a lumpectomcy on Oct.1,2005, Mine was 4.5 cm and no node involved. I had a rare Meduallary. They said if to get breast cancer this is the kind to get. I thought like there is a good cancer. I was 2a- grade 3 triple neg.I did 4 treatments of A/C every 2 weeks and a Neulasta shot the day after. And 4 taxol every 2 weeks and Neulasta shot. Then 33 rounds of rads. I ask about being tested and was told for my age was 58 when I was DX they thought it I was ok. No one in my family has ever had breast cancer. AS for blood testing for tumor markers. I ask about that she told me no. Some times they bring up red flags. Just keep on getting my mammagrams and self breast exams. I do get blood testing for blood counts and etc,
Take care
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Posted By: MarilyninMiami
Date Posted: Jun 05 2007 at 9:52am
Hello to all my fellow trip neg's! I am so glad to find this forum and very hopeful we can help each other on this journey, in a sorority we dont want to belong to!
I was dx in May of 05 with trip neg, Basaloid, grade 3, stage IIb invasive ductal ca of left breast. I had a partial mastectomy (my ca was high on the breast tail, 1.8 cm) followed by total axillary node dissection (3 pos nodes out of 21 removed). I then did dose dense AC-T. Was hospitalized one wk after first treatment with neutropenic fever. I have had low WBC for 2 yrs. Had 33 radiation treatments. Had a bone marrow biopsy which is being sent for sec opinion. I started acupuncture 2 months ago and brough my WBC from 2.9 to 4.3. Neutrophils are 2.4.
Has anyone else had problems with immune system a yr out of treatment?
Looking forward to this group kick starting more research into the trip neg br ca! We need more than chemo/rad in terms of available treatment!
 Marilyn |
Posted By: trip2
Date Posted: Jun 06 2007 at 2:30am
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Hi Tina Belle, I'm so sorry your c came back in your lungs and a lymph node and so quickly! I sure hope these new meds kick some fanny!
Also sorry to hear your boutique went out of business so you've lost your job. You've obvsiously had some big changes in your life recently, my best wishes to you that things take an upturn and get better for you,
Pam
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Posted By: *Kristi
Date Posted: Jun 12 2007 at 6:08pm
Hi everybody! I just ran across this site when I googled triple neg cancer, never realized there was a whole site dedicated just for that! Anyway, I'm glad I found it and I have enjoyed reading all about you ladies. Let me tell you a little about myself, my name is Kristi and I am 29, I was dx with IDC in April 07, with a 3.9cm tumor in my left breast, had a bilateral mastectomy May 07, 2 out of 17 nodes pos., I was told I my cancer was stageIIb. I took my first round of A/C last week, and will have 3 more, then 12 rounds of one of the "T", but can't recall right now which one it was. As of right now, no rads. I am happily married and have 3 kids, b/g twins that are 6 and a little boy that just turned 3! I plan on having reconstruction, but have to lose some weight before I can have the TRAM flap procedure. I look foward to getting to know you all, it's nice to be able to have friends that know what you are going through! ------------- Kristi http://www.kristi-thepinkpages.blogspot.com - My caner blog |
Posted By: trip2
Date Posted: Jun 13 2007 at 6:19am
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Hi Marilyn, have you found out about your biopsy results yet?
I too was just hospitalized over the week-end w/a complicated neutropenia/fever and a blood count of 1. Came home Monday
at a 2.2 and seeing my Onc tomorrow to talk about some treatment
changes and possibly getting Neulasta. I sure don't want to
go thru that again.
I'm sorry I don't know how long a low WBC can last, wouldn't your Onc be able to tell you?
When I had my treatments 4 yrs ago I didn't have this problem.
Hope everything went ok for you,
Pam
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Posted By: Jules
Date Posted: Jun 13 2007 at 7:36am
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Hello Marilyn
I'm sorry to hear about your WBC problems. I'm not sure if this might help but during my chemo treatment for IDC 6 months ago I was in hospital for 8 days due to Neutropenic Sepsis. My neutrophils were dropping daily and by day 7 were at 0.3. That day I was given a single jab of granulocyte colony-stimulating factor ( G-CSF ) and the very next day my count was 8.0 and stayed at a good level thereafter. Maybe a similar treatment might help you?
Jules
x
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Posted By: yowyow
Date Posted: Jun 13 2007 at 9:39pm
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Hi all !!
I am a 37 year old mum of 2 boys (5 & 6 year olds)
Diag May 06
lump & SNB 1.4cm IDC 30mm DCIS (margins not clear)
1 + node
Part Mast another 20mm DCIS (still not clear) another 11 nodes
removed all neg
Bilat Mast, skin and nipple sparing with immed silicon gel implants.
6 X FEC chemo (completed Oct 06)
Currently NED
Fantastic site
Looking forward to posting and chatting with you all - I can see some familiar user names already |
Posted By: trip2
Date Posted: Jun 14 2007 at 7:07am
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Hi yowyow and welcome.
And! Congratulations on being NED! That is fantastic.
Pam
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Posted By: sedgy
Date Posted: Jun 14 2007 at 1:19pm
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Hi All, Great to finda site dedicated to us. I'm Kelly and live in Australia. Dx in Oct '03, Stage IIB IDC 1.8 cm tumor right breast, 3/12 nodes positive, triple negative. Lumpectomy followed by 4AC, 4Taxol, 30 rads. Recurr June 05 right supraclavicular nodes, another 30 rads. Recurr Feb 06 left axilla 2 tumours largest 2cm, 4cm mass in soft tissue right internal mammary nodes. Rads to sternum and underlying soft tissue X 25, surgery to remove tumors in axilla. August 06 developed skin mets to right breast, right side of neck and right axilla. Xeloda by 4 cycles of 3000mg per day. November 06 4cm tumour left breast, skin mets right breast. December 06 Right mastectomy with large skin graft, left lumpectomy. Jan 07 left mastectomy. Feb 07 2cm tumour in left supraclavicular nodes and skin mets recurrence to left chest wall and several other areas on abdomen. Another 20 rads to neck and currently on Xeloda for skin mets. Bit of a journey...worst being mastectomies. I still work 3 days a week, have hubby and run plumbing business with him. 3 fabulous children 15-20years. Sometimes this is hard but mostly I just get on with it. Hoping for a cure. Cheers Kelly |
Posted By: trip2
Date Posted: Jun 15 2007 at 1:36pm
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Hi Kelly, my goodness you've had a time of it haven't you? Bless your heart but you sound like your attitude is that of a fighter, still working, that's wonderful.
Wouldn't it be wonderful to hear that cure word soon?!
I too found the mastectomy a very difficult decision to make but once I made that decision and then learning I was brca1 positive I knew I had done the right thing.
Best of luck to you and your family, let us know how you are doing,
Pam
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Posted By: Joan2844
Date Posted: Jul 07 2007 at 6:10am
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Ladies, I was dx in September 2006, just a few months after my 40th birthday. I am the youngest of three girls in my family with no history of BC. It was quite a shock. I've had neo-adjuvant (pre-surgical) chemotherapy -- 6 rounds of TAC. Seems like a lot of women have had AC-T; I had it all at once. That shrunk my 3.3 cm tumor (IDC, left breast) to about 2.3 cm. In February 2007, I had a partial mastectomy (lumpectomy) and full axillary dissection. I'm very happy with the lumpectomy -- if you look at me and can guess "which breast" has been reduced, then you're looking too hard! :-) On the other hand, I worry endlessly about lymphedema. I have chronic pain in my upper left arm; some swelling at times, but wearing my sleeve keeps it under control. In March-April, I had a full round of radiation. Wore my sleeve the entire time during that time period; no problems. Now, I'm doing "insurance" Xeloda. 6 rounds, but it is easy so far. With three boys (ages 7-15) I was worried about keeping up with them over the summer; they've already been through so much this year with mom being sick! I have a wonderful husband -- he has supported me 100% thru mood swings, fatigue and all the things that go with BC. I worry about a recurrence, even before my initial treatment is finished! So hard to find a new normal. I try. Everyone has something in their life to deal with, whether medical, physical or emotional. I have a strong faith in Christ as my savior. When I get down about the "hardships" of this life, I think about the glory I'll have with Him someday in heaven. Every day is a gift... ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: gramoffour
Date Posted: Jul 10 2007 at 3:27am
| Hi all! What a great site. I am 47 years old, diagnosed August 2006 with stage IIB, triplet negative, grade 3, 2.5 cm, lumpectomy, clear margins, sentinel node negative at time of surgery but later pathology came back with micromets. I had 6 FEC and thought I was done with chemo. Then came the micromets report, so I had 12 weekly Taxol. I am currently finishing up radiation, I Have six days left. I had a clear mammo in Feb, 2006 and in July I felt the lump. Anyone else have the lump just seem to appear out of nowhere?? |
Posted By: trip2
Date Posted: Jul 10 2007 at 6:02am
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Hello gramoffour, welcome to our board.
Wow only 6 days left of radiation, almost finished, that's great!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lisa L
Date Posted: Jul 10 2007 at 3:10pm
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gramoffour,
My lump appeared after my mammo and physical exam by my gyno. I'm sure it wasnt there before the mammo. At first I thought the mammo had caused it by bruising or whatever. when I called the tech to ask about it they immediately scheduled me for a sonogram and then a biopsy. The lump was big, about the size of a walnut. I'm sure the doctor (and myself) would have felt it in the exam, which was right before the mammo. go figure!!  ------------- Dx 8/05 age 43 mast & lat flap 10/05 Triple neg BRCA neg IDC 4.5cm rt br 0/1 sen node 6 A/C 5 Taxol, 25 rads 11/05-6/06 Central Illinois Currently NED |
Posted By: Vicki G
Date Posted: Jul 11 2007 at 9:40am
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Gramoffour,
My lump absolutely appeared out of nowhere. I was really good about doing self-breast exams after every period and I have very small breasts and have always been on the dense/lumpy side. This is embarrassing but I'll tell you anyway: It was after sex that I found it! I was laying in bed and my breast was itching deep inside. I was scratching hard when I noticed it and my heart sank! I asked my BF if he had felt it and he said YES but wanted to wait a few minutes before bringing it up! I waited for 2 cycles to see if it changed in size. It did but I went to the doctor anyway. Hindsight is truly 20/20 isn't it? I should have RUN to the doctor, maybe it wouldn't have made it to one of my lymph nodes...?http://www.tnbcfoundation.org/tnbc/forum/smileys/smiley7.gif Anyway, had a mammo then they took me directly to the ultrasound room and the rest is history... Take care, Vicki ------------- Lb Lumpectomy, IDC, Stage 2, Grade 3, 1+ node, 4 x A/C, 4 x Taxol, 33 x Rads. NED almost 4 yrs. Los Angeles, Ca. |
Posted By: kymmie
Date Posted: Jul 02 2008 at 6:49pm
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Just read your post, I know it is kind of old, but I am wondering how you are doing? Three years out, that's great. Kymmie ------------- IDC TN dx May 13, 2008 Had lumpectomy on 06/25/2008 0 Node involvement Clear margins. 4 tx. of Cytoxin & Taxotere 6 weeks rads. Finished all tx on Christmas Eve, 2008. |