Spotlight Stories - Please share your story! |
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arleneb 
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TNBC Foundation Administrator Joined: Nov 03 2009 Status: Offline Points: 394 |
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 Topic: Spotlight Stories - Please share your story!Posted: Aug 06 2013 at 12:27pm |
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TNBC Foundation Community,
Many of you have already visited our Spotlight Stories page: https://tnbcfoundation.org/living-with-tnbc/spotlight-stories We are always on the lookout for additional, inspirational stories to share with our visitors. If you would like to submit your story for consideration, please email your narrative along with a photo to: info@tnbcfoundation.org Thank you for helping us with this ongoing project. - Arlene Edited by arleneb - Aug 29 2019 at 4:06pm |
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Melissa P.
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Joined: Jun 10 2012 Location: Toledo, OH USA Status: Offline Points: 330 |
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Posted: Aug 08 2013 at 5:45pm |
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Posted in my TNBC online group, I hope you get some good stories from these ladies.
 Melissa |
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"Hope for more Tomorrows"
TNBC dx August 2009, Age 41, Stage 2, 2cm, 0 nodes Lumpectomy/ACx4,Taxolx4/33rads Triple Negative Breast Cancer, "I Won't Back Down!" mlsspaskvan.blogspot.com |
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arda
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Joined: Jan 13 2014 Status: Offline Points: 2 |
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Posted: Jan 13 2014 at 2:47am |
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t seems that when women have IBC about 30-35% of the time it is also
TNBC. It can be a very challenging combination to treat and after
helping about ten women with IBC/TN over the last several years it has
become a particular passion of mine. I am hoping that the efforts of the
scientists present will help the women with IBC and IBC/TN. I know it
is a small group, in numbers, and therefore challenging, funding-wise,
but I so admire those who have dedicated their efforts to find a
cure/better treatment for the IBC community.
Edited by arda - Aug 27 2014 at 12:41am |
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Melissa P.
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Joined: Jun 10 2012 Location: Toledo, OH USA Status: Offline Points: 330 |
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Posted: Jan 13 2014 at 4:21pm |
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I agree, we need to bring more attention to both IBC and TNBC, both rare and aggressive... we need more awareness and funding... and a cure.
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"Hope for more Tomorrows"
TNBC dx August 2009, Age 41, Stage 2, 2cm, 0 nodes Lumpectomy/ACx4,Taxolx4/33rads Triple Negative Breast Cancer, "I Won't Back Down!" mlsspaskvan.blogspot.com |
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Jgari
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Joined: Feb 27 2014 Location: New yok city Status: Offline Points: 18 |
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Posted: Mar 02 2014 at 8:22am |
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I am in that group and very worried about constipation when my chemo begins
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rahul2630
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Joined: Sep 30 2014 Status: Offline Points: 10 |
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Posted: Oct 04 2014 at 2:54am |
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Well done ! Such inspirational stories full of encouragement and life are essential for bright and hopeful future.
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dayle
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Joined: Apr 11 2016 Location: mississippi Status: Offline Points: 30 |
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Posted: Jun 17 2016 at 12:31am |
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hi....i have tnbc....stage 3c....i also suffer from ulcerative colitis and when i have a flare up it is something else..i have a great doctore in meridian , ms. that is very knowleedgeable and kind and compassionate....and he has helped me get into the first remission in 30 yrs so i just love him lol....im onot sure what info you wer wanting but let me know and i wil
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Irishone65
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Joined: Dec 16 2016 Location: Toronto Status: Offline Points: 6 |
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Posted: Dec 16 2016 at 1:58pm |
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What is IBC?
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Irishone65
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Joined: Dec 16 2016 Location: Toronto Status: Offline Points: 6 |
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Posted: Dec 16 2016 at 1:59pm |
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Hey
Noticed it's been 7 years for you. No problems in 7 yrs? |
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Jacklin
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Joined: Dec 26 2015 Location: Canada Status: Offline Points: 559 |
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Posted: Dec 16 2016 at 2:18pm |
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IBC = Inflammatory Breast Cancer
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Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Sara414
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Joined: Jan 25 2017 Location: Owensboro Status: Offline Points: 24 |
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Posted: Jan 28 2017 at 8:21am |
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7 years? Not seeing story? What is the story? 7 years NED? What got you there? How are you doing now?
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mindy555
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Joined: Aug 13 2011 Location: Oklahoma Status: Offline Points: 980 |
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Posted: Oct 23 2017 at 3:43pm |
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Hi Sara,
We have many ladies 7 plus years.. I think about 13-14 or more years on this particular forum. I'm well on my way to the 7 year mark. A tiny bit of residual neuropathy, a toe nail problem.. I'd say that's minor in the big scheme of things. LOL I feel extremely BLESSED to be surrounded by loving family, a grown son and daughter I couldn't be more proud of. 2 college student daughters (actually I really did marry young and my daughter started having babies young) with a total of 5 grands in our blended blessed family. I love them all like there's no tomorrow! |
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Dx July 2011 56 yo
Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
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Lisajo
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Joined: Aug 02 2018 Location: Texas Status: Offline Points: 6 |
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Posted: Aug 02 2018 at 9:01am |
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I am new to this site. My sister was diagnosed almost 3 weeks ago with Triple negative invasive ductal breast cancer. She had surgery to remove the tumor, but the margins were positive so she had to have another surgery. They removed 4 lymph nodes and they were a positive negative meaning that there were cancer cells present but they were so minutely present that it was considered negative. She went to the dr yesterday and the margins are negative so they are proceeding with a treatment called SAVI. Any info that you can provide will be so appreciated. She is scared to death of corse, and seeing that you have seemed to do something right maybe you can share what you have done. Thank you 😊
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Sister of a Tripple Negative Fighter
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Portia
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Joined: Nov 28 2019 Location: Pittsburgh, PA Status: Offline Points: 8 |
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Posted: Nov 28 2019 at 2:05pm |
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hi all!
I’m new here. First, my story in brief. Then, a potential offer. I was diagnosed in January 2019. My diagnostic mammogram in December indicated there was a worrisome mass in my right breast. It was 1.8 cm. I had felt some “thrumming” or vibrations in my breast about October of last year. But I put off seeing the doctor because my diagnostic mammogram was coming up. My breasts have always been lumpy and dense so I wasn’t alarmed yet. I knew after the mammo that the biopsy would be cancer. It turned out to be DCIS and Invasive TNCB of a high grade. One lesion. But since it was the holidays, it was difficult to schedule tests, ultrasounds, biopsies, appointments with my surgeon and oncologist. By the time I met my oncologist at the end of January, my Thing at grown exponentially. I got a porta cath and chemo. Taxol/carbo then adriamycin/cisplatin. My results were remarkable. The Thing shrank to almost nothing. When I had my mastectomy, there was nothing but scar tissue and a small bit of DCIS. My margins were 2 cm. My lymph nodes were negative. I’m now finishing up radiation. I’m very lucky considering the initial size of the Thing. I feel great. My prognosis is very good. Now, for the offer. I’m not sure who to address this to. For 25 years, I was a drug designer in the pharmaceutical industry. For the last 8 years of my career in pharma, I studied and designed new drug entities called kinase inhibitors. I’ve also worked on a BRCA protein called RAD52. Regrettably, my area of pharma research, known as small molecule drugs, imploded during the years 2008-2012. In that period of time, 300000 of us lost our jobs and the industry relocated a small number of positions to Cambridge MA while the rest of us were laid off. All of my friends and colleagues in NJ lost their jobs. Most left research permanently. That was my fate as well. I had to start over in another industry from the bottom up. I put my passion for drug design in my past and moved forward. Then I got cancer. My chemo nurses told me that kinase inhibitors are starting to hit the market now. It makes sense that the stuff my friends and I worked on 10 years ago would just now start getting approved. But drug design research doesn’t always have to be focused on kinases. I can do computational chemistry/drug design on many proposed protein targets. Now that I am personally involved, I have a great deal of interest in trying to find drugs for this relatively rare type of breast cancer with limited therapeutic options. So, if anyone reading this knows of an investigator who needs an investigator who does drug design, let me know? I would love to do this kind of work again if only in my spare time.
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DonnaYardshopper
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Joined: Dec 21 2017 Location: Cary, NC Status: Offline Points: 12 |
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Posted: Mar 04 2020 at 10:14pm |
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I am a BRCA1 gene carrier - almost 21 years out from 1st diagnosis and almost 18 years out from 2nd diagnosis which was a 2ndary primary in the other breast. Doing fine, except for having a bit more weight than I'd like to have. : 0)
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BRCA1, TNBC dx May 1999, Age 41, Rt. breast, Stage 1, 1.2cm, 0 nodes, grade 3, Lump/ACx4/36rads, TNBC dx Aug2002, Lft breast,1.3 cm, Grade 3, Lump/13 wkly Taxol. 2003 Double Mast w recon free flap.
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Lee21
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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Posted: Aug 23 2020 at 2:41pm |
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Hi everyone. I last logged on almost 6 yrs ago. My diagnosis was in December 2011 and my last treatment ended in January 2013 (I enrolled in a clinical trial after completion of radiation therapy). I just want to say that despite my suboptimal response to treatment (I received neoadjuvant ACT but had significant residual disease), I am doing well, almost 9 yrs after my initial diagnosis. I see my oncologist annually and I also get an annual mammogram and MRI (because of dense breasts). Since my diagnosis I have adhered to an exercise regime religiously (I walk about 4 miles a day, 5 days a week) and have cut out meat totally. I stopped drinking wine until about 3 yrs ago when I resumed but only when I was on vacation. I don't know if those things helped but since I am alive I'm not changing my habits.
Anyway, I just wanted to tell you all there is light at the end of the tunnel. I remembered I felt lighter when survivors posted here to let the rest of us know that we can beat TNBC!
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12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm |
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Plume
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Joined: Jul 15 2018 Location: France Status: Offline Points: 118 |
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Posted: Aug 24 2020 at 5:59am |
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Lee21, bravo! I LOVE your story and you have lifted my spirits today! I am doing more or less the same things as you. Walk everyday and Pilates too since lockdown (due to the virus) and the combination of the 2 have been excellent for me physically and for my morale. I didn't drink alcohol for the year of my surgery and treatment but did go back to having a small glass of wine daily. However, now that I am going to have some reconstruction work in October, I have gone teetotal again. Like you, I have no plans to change these self-imposed habits WHETHER THEY WORK OR NOT. They have lots of other benefits in any case. I am one of and those "fanatics" that think a daily walk will solve the problems of all kinds of illnesses and brighten your mood. Lastly, I take vitamin supplements and turmeric because I have read several articles that say that a good dose of turmeric daily can help prevent recurrence. Thank you again for your great post. |
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pawwjw
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Joined: Nov 10 2020 Location: PA Status: Offline Points: 17 |
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Posted: Dec 14 2021 at 9:14am |
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Hello everyone!
I will be 1 year TNBC free 12/23/21. I went through 15 months of treatment including IV chemo, surgery, radiation, and Xeloda. I have my 3 month oncologist checkup 12/17. Had a mammogram 6/21 which was clear. I am wondering how often mammograms and MRIs I should be having. I understand each case is different. The recommendation I initially had in June was to follow up with a mammogram once a year. That does not seem to be enough especially with TNBC. I want to be proactive with my testing and follow up care. What are some recommendations for TNBC post testings? Pam |
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KrissyV
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Joined: Jan 11 2022 Location: Rhode Island Status: Offline Points: 6 |
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Posted: Jan 11 2022 at 11:44am |
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Hi Pam,
Congratulations on beating TNBC!! I am at the beginning of my journey with TNBC, so seeing your post gives me great hope. I have the BRCA mutation and also have a mother and best friend who are considered "high risk" - they are receiving two screenings per year - one mammogram and one MRI (every 6 months there is a screening). If you have dense breast tissue, I strongly urge you to advocate for an ultrasound mammography as a backup to the mammogram. It saved my life! My TNBC breast cancer never would have been detected in a regular mammogram due to my dense breast tissue. A physician's assistant I used to see for routine primary care once advised me to ALWAYS follow my mammogram with an ultrasound mammography. I had a 3D mammography as part of my annual care last year, it was "clear" but I remembered her advice and secured a ultrasound mammography as a follow up. That is how they found my triple negative breast cancer. By a miracle straight from God, they found my cancer early enough that I will beat this thing, and will be able to see my young children grow up. I hope that you are able to find a physician who will give you the screenings you need.
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Miri
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Joined: Mar 15 2022 Location: Jamaica Status: Offline Points: 8 |
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Posted: Mar 31 2022 at 2:52pm |
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Hi All !
I'm 57, I live in Jamaica, i'm triple negative, brca negative, PDL-1 negative so immunotherapy is not an option. I want to first say that before I found this foundation forum I had spent the weekend with an impending sense of despair after feeling a new node in my right supraclavicular. I knew immediately that my TNBC had metastasized and that the nagging cough I had was a pleural effusion. I had jumped on the internet and was bombarded with information that with TNBC distal spread my OS was less than 13 months. Then found this forum and read a few posts which brought tears to my eyes as I realized that metastasis is not a death sentence. My first diagnosis was in sept 2020 when I found a lump in my right breast. I had no axillary node involvement. PET scan showed no lesions anywhere else. I went through chemo as prescribed and opted for a double mastectomy in April 2021. My specimens taken during surgery at that time came back with a complete pathological response to chemo and no evidence of cells. SO imagine my surprise when I felt the node less than a year after surgery. We have excellent doctors here in Jamaica that are internationally trained so I know i'm in good hands. I'm looking forward to being a part of this community of hope |
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