any long time survivors of tnbc? |
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Sunday22 
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Joined: Aug 14 2009 Status: Offline Points: 40 |
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 Posted: Aug 23 2009 at 1:59pm |
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Trip: Congrats on having NED. I presently have cancer inside my left breast. BMX on Sep. 2nd and chemo in October.
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Brenda
1st Dx 7/05 TN lumpectomy, chemo rads. 2nd dx 7/09 1st tumor ER+/PR-/Her2-; second tumor ER-/PR+/Her2-, bmx, immediate recon, T/C |
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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Aug 23 2009 at 6:52pm |
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Brenda,
I know changing diet and doing all that seems to be a popular mode. Especially for newly dx when the fear is still so high.
I haven't changed my lifestyle at all since my dx. Eating healthy is a regime I have always tried to follow and always needs improvement in my life. [ I guess that makes me a not so good practioner !]. I do love my sweets but try more from weight factor to stay away. I never eat fast food. Never have. I have always excersized although lack of energy after tx and then busyness of life, I don't think I do as much or work as hard at it as I used to. [ Maybe just age too !]. I do run a couple miles 5 mornings a week and try to hit the gym a minimum of 2 days per week for additional cardio and weights. I do read labels on my food. I eat only fresh fruits and vegetable but in Cal. that is pretty easy. I grow my own veggies during summer. I like cooking and rarely have processed foods.
I am not sure how well that may answer your question. I do have vit. D but am not always consistent with taking it.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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Roxie
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Joined: Aug 22 2009 Status: Offline Points: 9 |
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Posted: Aug 27 2009 at 9:28pm |
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wow, someone else second guessing someone's doctor! where did you get your medical degree from?
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Roxie
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Joined: Aug 22 2009 Status: Offline Points: 9 |
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Posted: Aug 27 2009 at 9:30pm |
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Do yourself a favor, ask your doctor, these people here think they are doctors, they will upset you and gave false information.
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defeatbc
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Joined: May 02 2008 Location: United States Status: Offline Points: 17 |
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Posted: Nov 29 2009 at 3:45pm |
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Hi TNBC Sisters.
I am back from a long hiatus from this forum, and was sad to see this thread come to an abrupt halt. Long term survivors of TNBC have always been my best source for wisdom and courage. I have learned so much from you ladies. Please, please don't stop posting ("medical degree" or not!). Lets keep cheering each other on! I'll restart the cheers: My mother has been NED from TNBC since 1996. I aspire to be like her. -- Hoa aka defeatbc |
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Dx 3/08 at 31 yrs. Stage 2, Grade 3, 1/13 Nodes, Bi-Mast adjuvant Taxotere & Carboplatin BRCA1- and BRCA2- Determined to grow old with my spouse and see my toddler son grow up! |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Nov 29 2009 at 4:47pm |
Congratulations on your mother's NED! It's wonderful to hear long time survivor stories. It give us so much hope. 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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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Nov 29 2009 at 6:24pm |
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I think survivors eventually move on, hence not so many posts. Or in my case, being dx before TN was named, it was only a fluke that I came across the name and this forum a few years ago. First it was curiosity about what I had been thru and what was happening now. Now it is mostly encouragement for those just starting this journey. Tx has changed quite a bit since my dx that I don't relate to so much of today's protocol. Which is another part of my encouragement ! I did have half of today's "gold standard" and I am still here. Hoping for positivity for all of you.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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unklez
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Joined: Sep 05 2009 Location: New Jersey Status: Offline Points: 1000 |
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Posted: Nov 29 2009 at 6:37pm |
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Thanks Kirby.
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Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Annie M
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Joined: Oct 18 2009 Location: New Mexico Status: Offline Points: 10 |
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Posted: Nov 29 2009 at 6:37pm |
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Well, I'm not exactly a long time survivor, however when I had a recurrance in October, 2009, I was placed in a Phase III clinical trial that consists of Gemzar, Carboplatin and BSI 201 which is a PARP Inhibitor. The results, after the first cycle of two weeks of treatment with one week off, are phenomenal. The lymph node in which we found cells had gotten as big as a ping pong ball. It is like a pea now! Others in this trial have had similar or better results. Testing is done after the completion of the second cycle.
When a recurrance happens they give us a label of Stage IV. I choose to ignore that since i know this can be managed. I know several women who have Triple negative and have had recurrances and are fine. Going through chemo again is not exactly fun, but we are doing it and with great results.
So, I can't assure you that there will never be a recurrance, but, if it should happen, this particular approach seems to be excellent and is on the fast track with the FDA for approval.
I'm not sure where or how to list my information, but i was diagnosed in March, 2008. 2.5 cm, stage 2B, very agressive. in centinel node. 12 nodes removed. Lumpectomy, TAC for 18 weeks, Radiation for 7 weeks. Recurrance in October this year.
Annie M
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unklez
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Joined: Sep 05 2009 Location: New Jersey Status: Offline Points: 1000 |
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Posted: Nov 29 2009 at 11:15pm |
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Dear Annie,
Thanks for sharing your positive experience with BSI 201. |
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Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Annie M
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Joined: Oct 18 2009 Location: New Mexico Status: Offline Points: 10 |
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Posted: Nov 30 2009 at 9:17am |
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Right now there appear to be few side effects and great results. I'm so encouraged!
Ann
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SusanE1104
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Joined: Jul 24 2009 Status: Offline Points: 436 |
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Posted: Nov 30 2009 at 9:45am |
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Dear Billie,
First let me say that I know how difficult this is for you. I supported two sisters through ovarian cancer, and I know that it is very difficult for us sisters.
Now, I want to tell you my experience with my own diagnosis back in Jan. of this year. I was so terrified, I really didn't want to know any details. My Reach to Recovery volunteer told me that I should find out all I could about my disease, but I just did not want to know! I couldn't handle it at that time. By April I was ready to find out more. It wasn't until then that I started asking my onc questions and found out I was triple negative. I found these web sites about that time too. Previously I was too frightened to look anything up on the net. I remember telling my daughter at one point, that I would ask questions as I was ready to hear answers. In other words, I didn't want her to ask anything I wasn't prepared to hear the answer to. So you might want to ask your sister's permission before you ask the onc questions.
I think my onc was sensitive to this because he didn't tell me anything until I asked. He did tell me I was stage IV after the first PET scan of course, but we didn't discuss triple negative and what that meant until later. I know everyone is different. Some want to know everything from the get go, and I would have thought I would be one of them, but I wasn't.
Take care of your sister AND yourself.
Good luck,
Susan
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Susan 62 1987 Stage 1 1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED 12/09 liver mets Taxol/Avastin 4/10 liver mets 11/22 Parp Car/gem parp failed 2/2011 Ixempra |
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tasoulla
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Joined: Oct 16 2009 Location: cyprus Status: Offline Points: 261 |
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Posted: Nov 30 2009 at 9:51am |
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Hi Raine,
What was diagnoses and how many nodes were affected in 1997 and what is the 2nd diagnosis? What treatment did you had in 1997 and what at the 2nd? I'm searching on behalf of my mum which has a triple negative and searching a lot round treatments. I wish you all the best and be always with smile!! |
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tasoulla
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Joined: Oct 16 2009 Location: cyprus Status: Offline Points: 261 |
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Posted: Nov 30 2009 at 10:23am |
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Hi neicybroomer,
how many lymph nodes were affected by cancer and how often were the cycles of your chemo? after chemo what kind of tests did you started and how often? my mother is having chemo now, and i'm searching a lot to help her as for the treatment and for the tests. i know you are worry a lot but you have to think positive and you will see that positive results are always will come in your life. the way we are thinking is affecting out lives. i wish you all the best and always think positive!!! |
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carbanner1
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Joined: Dec 08 2009 Location: Bend, OR Status: Offline Points: 3 |
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Posted: Dec 08 2009 at 2:15pm |
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I come from a long family history of BRCA1 TNBC and only on mortality and that was because she chose not to treat. 8 women so far alive and thriving! Also all of those eight women went with lump ectomies no chemo at first and on re-occurrence they went all our with bi-lateral mastectomies and we have a range or 3 year survivor to 20+ years. They have children, grandchildren long full active and some less active lives but they are happy health women with lifetime to live.
I am a BRCA1 (Gene Deletion 9 thru12) Stage 2b 1N, grade 3. Going thru Nonadjacent chemo and getting ready for a full mastectomy and hysterectomy. Yahoo, treatment 10 of 16 start tomorrow. I'm over the 1/2 way mark.
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SusanE1104
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Joined: Jul 24 2009 Status: Offline Points: 436 |
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Posted: Dec 08 2009 at 2:24pm |
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Welcome, Carbanner1! What wonderful news you brought with you. May I ask if all eight of your family members were diagnosed early?
Susan
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Susan 62 1987 Stage 1 1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED 12/09 liver mets Taxol/Avastin 4/10 liver mets 11/22 Parp Car/gem parp failed 2/2011 Ixempra |
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brandy
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Posted: Dec 14 2009 at 12:06am |
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I am also on the clinical trial for the PARP inhibitor. I was recently diagnosed with stage 4 tnbc. I am 28 years old and have two daughters 2 yrs old and 6 months old. I thought the lump in my breast was a clogged milk duct. i was just wondering how the parp is working? is it making you sick?
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DisneyGirl1956
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Joined: Aug 30 2009 Location: Chino Hills, Ca Status: Offline Points: 143 |
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Posted: Dec 14 2009 at 12:21am |
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I have had one round of the BSI-201 with no real side effects like I had on TAC this summer. I was a bit tired the 2nd day after treatment but recovered nicely so far. Where is your cancer other than your breast to put you at a stage 4. Have you started the PARP yet and were you chosen for the arm with the PARP to start with.
Pleas keep in touch. There are very few of us on this.
Patty
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dx June 2009 Stage 3C
6 rounds of TAC Lumpectomy 10/09 13 nodes removed, Chemo did not work tried BSI-PARP Trial 2 rounds, did not work, just started Ixempra/Avastin/ Xeloda |
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Annie M
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Joined: Oct 18 2009 Location: New Mexico Status: Offline Points: 10 |
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Posted: Dec 14 2009 at 9:34am |
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Patty,
I was stage 2B in spring, 2008. Had lumpectomy (left side), TAC and radiation. Had a recurrance in fall, 2009 and was selected for the PARP arm to start with. But even those who were not selected and only get the gemzar and carboplatin seem to be doing well, according to the doctors where i'm being treated. I just finished cycle two and have a CT this week. There is no doubt in my mind that this is being controlled and is reducing.
There is a node under my right arm, some bone activity, a small spot on my lung and there was more node activity which we believe is gone now.
Another interesting thing, for anyone who may have a recurrance in multiple sites is that I am told it is relatively easy to control in the bone. When it recurrs in major organs there is more concern. I have been told that I am a candidate for TomoTherapy for the lung if the PARP Inhibitor does not do the trick. That sure makes me feel even more positive.
Do keep me informed on your progress! I think we have lucked out on this treatment! I've heard of NOBODY who has not done well.
Ann
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Kellyless
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Joined: Jun 18 2009 Location: Dallas, Texas Status: Offline Points: 1154 |
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Posted: Dec 15 2009 at 2:26pm |
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My grandmother had hormone + mets to the bone, diagnosed "terminal", and lived for another 17 years, to 81 years old. She was on the first trials of Tamoxophen, was treated at MD Anderson. I didn't spread beyond the bone in her arm until the last of those 17 years!
FYI - she wasn't my blood grandma, just the woman that raised my mom.
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED! |
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