BRCA negative question |
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AngieR65 
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Joined: May 03 2016 Location: Wisconsin Status: Offline Points: 15 |
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 Topic: BRCA negative questionPosted: May 10 2016 at 1:11pm |
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Hi everyone,
My BRCA results came back negative. Of course I'm relieved since I have 4 children and don't want them to get this horrible disease. However, I'm also worried because it seems from what I've read that the Carboplatin (which I will be getting after my A/C) isn't as effective on BRCA negatives as it is on BRCA positives. Has anyone else heard this or something different?
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Dx April 7, 2016, routine mammogram. Stage IIa, grade 3, IDC, TNBC left breast. 0 lymph nodes. BRCA negative. 4 doses A/C done 6/6/16. 0/12 Taxol, 0/4 Carboplatin.
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gordon15
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Joined: Jun 22 2015 Location: San Diego CA Status: Offline Points: 788 |
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Posted: May 10 2016 at 2:44pm |
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Here's a March 2016 article that says carboplatin may be effective against BRCA negative ("wild-type") as opposed to "mutant" >
Prior to this study, it was thought that platinum compounds are not active in patients without germline BRCA mutations, said Christy A. Russell, MD. She noted that before she saw the GeparSixto findings, she was not in favor of adding carboplatin to neoadjuvant chemotherapy. She commented that the advantage in BRCA wild-type TNBC was seen “not only in pathologic complete response rate, but also what appears to be translating into disease-free survival by the addition of carboplatin. And it has now made me think about it a little more. I have not yet added it.” - See more at: http://www.onclive.com/ http://www.onclive.com/ Edited by gordon15 - May 10 2016 at 2:46pm |
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017 |
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AngieR65
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Joined: May 03 2016 Location: Wisconsin Status: Offline Points: 15 |
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Posted: May 11 2016 at 9:39am |
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Great article, thanks for sharing. When I asked my onco the same question, he was quick to point out that the studies that showed an increase in pCR in early stage TNBC when adding Carboplatin did not seperate BRCA + from BRCA -. That's encouraging.
He also said that there isn't a one-to-one correspondence between who achieves pCR and disease-free or overall survival rates. Some who don't get to pCR with chemo go on to have no recurrences, and some who do get to pCR will have recurrences. Scary, unpredictable disease this is.
 Edited by AngieR65 - May 12 2016 at 11:15am |
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Dx April 7, 2016, routine mammogram. Stage IIa, grade 3, IDC, TNBC left breast. 0 lymph nodes. BRCA negative. 4 doses A/C done 6/6/16. 0/12 Taxol, 0/4 Carboplatin.
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gardengirl
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Joined: May 03 2016 Location: Santa Cruz, CA Status: Offline Points: 6 |
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Posted: May 11 2016 at 1:39pm |
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The way my doctor explained it to me was that the Taxol would lower my rate of reoccurrence to say 15% (just a little higher than a everyone else), but in some testing they have found that the addition of Carbo at the same time, lowers the reoccurance rate an additional 5%.
I figure for me personally "it can't hurt", if there is a chance I can benefit that lowering rate of a possible 5% I am all for it. We are here when you need us, Jessica
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BRCA -
Lynch Syndrome - 23PanelDNA - 10/2015 DX TNBC IDC Stage 1 Grade 3 .8mm 11/2015 Surgery Par. Mas.. left side 1 cm 12/2016 A/C 4x 3/2016 Tax/Carbo 9x 33 rounds radiation 4/2018 reoc. sternum |
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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: May 11 2016 at 7:12pm |
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TNBC is more what it isn't (ER+, PR+, Her2+) than what it is. We know there are many sub-types and they will probably find more. I've seen women with large tumors, nodal involvement, never recur and others that have small tumors, no nodes, recur. Some are very aggressive and don't respond to chemo and others that are very responsive to treatment. I think the statisticians and oncologists probably scratch their head trying to predict the outcome of a patient.
I'm BRCA negative and had a recurrence. At the time there was a Phase 3 clinical trial that was opened up to Open Access (BSI-201: Carboplatin, Gemzar and Iniparib). Phase 2 results were so good it looked like FDA approval was on it's way. What they found is when given to the broad population of TNBC patients, the Phase 3 results were disappointing and Iniparib was never approved. I always thought they should look at the population that responded to the treatment and find what was unique in the tumor biology or patient. Maybe it's not a one size fits all treatment, but a sub-population of TNBC would benefit. I achieved NED (no evidence of disease) after 2 cycles. Was it Carbo? Gemzar? Iniparib? or the combination of all 3? I don't know, but my onc liked that we were giving it the one two punch. She called it marinating the tumor - constantly hitting it. I guess I'll never know which drug worked or if it was the combo working together. I read this blog about another concept of attacking metastatic breast cancer. Not sure it's the answer, but maybe there is some logic in the approach? ". . . read The Death of Cancer, which blew my mind. Do you know why Hodgkins has a high cure rate nowadays? Because some doctors said “F**k this, let’s just poison the sh*t out of this cancer until it’s GONE.” And they gave patients not one, not two, not three, but FOUR different chemotherapy drugs at once. It was called VAMP for short, and guess what? It worked. Because instead of just attacking cancer one way, they attacked it on multiple fronts at once. Instead of seeing the patients as terminal and trying to make them comfortable, these doctors saw the patients as people who should get to live normal lifespans, and they set about to make it happen." |
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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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OlesleeO
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Joined: May 12 2016 Location: Kansas Status: Offline Points: 6 |
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Posted: May 12 2016 at 5:47am |
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I was diagnosed with Stage 2b TNBC grade 3 the beginning of February and started AC the middle of February. After 2 doses my tumor continued to grow and spread to more lymph nodes. It started at 1.5cm and by the time we switched chemo it was up to nearly 7cm. After reading on the MD Anderson site about them using Carboplatin along with Taxol I talked to my Dr. about it and he was hesitant but finally agreed. I just fished my 7th round of weekly Taxol and my 3rd round of every 3 weeks Carboplatin. Today was the first day that I was not able to feel my tumor. With that said I don't know for sure if it's the Taxol that is working or the Carboplatin. I do know that I have felt more shrinkage after the combination of both but again I can't say which is working better or if it truly is the combination of both. I've also read that adding Carboplatin lowers your risk of reoccurrence. I have had nearly no side effects other than 2-3 days after the Carboplatin I am very tired but after sleeping most of that day I am back to normal. I still work full time and until recently had more energy than before I was diagnosed. I know my recent lack of energy is due to not hydrating or eating as well as before. I was very consistent with staying hydrated and eating nutritious and often until the past week or so and need to get that back on track. I hope my info was helpful.
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sunrise
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Posted: May 12 2016 at 3:56pm |
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OlesleeO
Were you also brca neg? Jackie
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gordon15
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Joined: Jun 22 2015 Location: San Diego CA Status: Offline Points: 788 |
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Posted: May 12 2016 at 6:00pm |
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My wife had Carboplatin/Gemzar, she had the same reaction, actually, when the lump is softer, she had an ultrasound after (2) infusions... I think maybe you need to ask for it, but her doctor said it's a good idea to do an ultrasound after (3) infusions , assuming it's (6) total. Her doctors also confirmed the softness via exams...
The radiologist said her tumor "is cystic" after (2) infusions, that's a great sign because it's being broken down, where the chemo can go in and hopefully destroy the mutating cells. I read that it's a vascular breakdown that it becomes cystic..., maybe that's "TMI" (Too Much Info)Sorry if so... just my experience with my wife. fyi Edited by gordon15 - May 12 2016 at 6:08pm |
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017 |
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JackiWalkr
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Joined: Jun 25 2014 Location: California Status: Offline Points: 59 |
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Posted: May 13 2016 at 10:29am |
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I had carboplatin and taxol as first line also BRCA normal/negative and got a complete pathological response. In May of 2014. Still NED. Just had my mammo Monday.
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DX IDC TNBC 3/31/14 Age 46 Stage 2a, Grade 3, 2.1cm, 0 nodes, (4)Carbo(5)Taxol. AC DD 4 of 4. Lumpectomy 10/30/2014 NED. 33 Rads 2/12/15. BRCA 1/2 normal=negative
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