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BanR View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2014 at 10:27am
123Donna
I talked with my oncologist regarding my BRCA2 mutation of unknown significance.
I happened to read somewhere that Triple negative BC and Ovarian cancer has a link
He said he doesnt recommend ovary removal for me.
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2014 at 11:13am
Dear believer,

Your questions about the efficacy of MD Anderson's protocol are important and should be asked of your oncologist at MDACC.

It is my belief that whatever protocol they suggest for you does NOT have to be done at MDACC unless it includes a 'proprietary' clinical trial offered only at MDACC.

If you tell your MDACC oncologist that you would like to have the same protocol they are recommending but have it at your local oncologist I believe that should be feasible and MDACC and your local oncologist can work as a partnership regarding your treatment. The problem comes in when the local oncologist decides to ignore MDACC's recommendations, which I have seen happen.

Also, very recently, I have seen MDACC tell new patients that if they are not going to have treatment at MDACC there is a six month wait to see an oncologist. I personally am extremely disappointed with this policy and hope it is changed back to their original policy of seeing new patients, whether or not they are going to have treatment there. 

By making it more difficult for a patient to be seen, patients will go elsewhere and when it comes time for radiation therapy the patients will probably have their XRT locally when, in my opinion, they could benefit from MDACC's world class facility. This new policy is unfortunate in my opinion both for the patient and MDACC. 

Dear BanR,

I think you should ask your questions to your oncologist and if not satisfied with the response seek another opinion. There are other excellent Breast Medical Oncologists in Houston. One of them is 
Dr. Rimawi at Baylor. I have found him to be a thorough, very bright, caring physician.

https://www.bcm.edu/research/centers/breast/index.cfm?pmid=10752

Regarding ovarian cancer it is essential, in my view, that you speak to a knowledgeable Certified Genetic Counselor about whether they can get more information on your VUS to see if it is deleterious or not. Myriad Genetics has many of the reports on VUS's and they have not made it available. I am part of a volunteer effort to 'free the date.' 


Also, some gyn/oncologists I have spoken to recommend 'risk-reducing' gynecologic surgery if there is a profound family history of ovarian cancer, especially early-onset disease even if the woman tests BRCA- negative.

I am not recommending that any woman do anything medically. I am not a doctor. Just want to call to your attention that a profound family history of ovarian cancer is considered by many to be important. 

At MDACC, I would try to meet with Dr. Karen Lu


warmly,

Steve

p.s. for both of you, I may be in Houston with a patient on February 3 and I will be with a patient on February 20. would be happy to see both/either of you if you are around. You have my contact info; would be great to say hello in person.

 
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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gansai View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote gansai Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2014 at 11:42am
Hi BanR,

I just got a second opinion from MD Anderson 3 days ago regarding my treatment. I already had a mastectomy on January 8th through Methodist. The chemo regime that MDA have recommended for me is as follows -
12 cycles of  Taxol weekly with Carboplatin every 3 weeks
Followed by 4 cycles of FAC every 3 weeks
I will probably be having radiation as well but not have not seen the Radiation oncologist yet at MDA.  The chemo cycle that Methodist was recommending was 4 cycles AC following by 4 cycles of Taxol (every three weeks). We decided to go with MDA as the carboplatin is showing to be effective for Triple Negative. Hope this helps with the current protocol that MDA is recommending. Take care.

Was diagnosed with Stage 2, 4cm and 1micromet/7  
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BanR View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2014 at 9:57am
Gansai, The carboplatin drug you mentioned is not part of my chemo regime. What did MDA have to say about surgery first in your case?
Thanks for all the info Steve! Would be great to meet you but unfortunately I am not in US now. 
There is a query which popped up my mind.
I am Her +2 ( borderline) as per IHC after surgery. They did a FISH and it came back Her negative.
What does it mean? Does it mean few of my tumor cells were Her positive which will go untreated? My ACs are over and 2 of my taxols are over too, with 2 left. 
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Bayside View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bayside Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2014 at 12:53am
My wife is starting TC treatment on Monday. When we first went to see the oncologist she discussed both TCx4 and ACx4 followed by Taxolx12 and we  settled on the TC since it would be easier for my wife to tolerate. We went back this week and the doctor had conferred with the endocrinologist and now suggested the AC regimen since it didn't require the heavy steroid dose (Decadron before during and after the infusion) and wouldn't upset her Addison's and her cortisone level. This took us a bit by surprise and my wife insisted she wanted to stick with what she'd agreed on before. Even getting used to the idea of chemo in the first place had been difficult and she'd finally reconciled to the four cycles three weeks apart.

Is there anyone who knows if there is much difference in efficacy between the two protocols?

It's a bit of a worry too since we are starting 61 days after the lumpectomy and I see another post about a study showing that delay is a risk factor.

On the good side she had a full body PET plus CT scan and it was fine
wife DX IDC TNBC 11/13. Grade 3, Stage 2a. Lumpectomy 12/13. margins clear, 0/2 nodes
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BanR View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2014 at 2:06am
bayside: what i heard from the surgeon here is minimum is 3 weeks and maximum is 8 weeks. So you are just about in time :) I was waiting for my FISH reports and couldn't begin at 3 weeks..began at 5 weeks.
Mostly hear about AC and Taxol regimen but at times I do hear of TC too for aged patients who cannot tolerate Anthracyclines. All the best for whatever regimen you choose. At the end of the day, there is no fixed protocol. Had that been the case the whole world would be following it. Every medical centre follows its own. But yes for TNBC, AC/FEC and Taxol most commonly used.
Stage 2 that means its more that 2cm yet no nodes are affected, thats nice!



Edited by BanR - Jan 29 2014 at 10:48pm
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2014 at 11:15am
Dear Bayside,
 
I am so sorry you and your wife are having so much stress about starting treatment late.  I am just an ordinary person who is a TNBC survivor of 7 years.  My oncologists, almost without exception treats TNBC patients with ACT.   In most cases he uses the dose dense treatments.  He believes the anthracycline is a very important component in the treatment regime for triple negatives.  I volunteer at his clinic so I get to meet a lot of cancer patients.  The her-2 and hormone girls do get a bit different regimes. 
I'm not telling you what to do, but if she were my wife I would stress the ACT.   I feel very passionate about this.
 
God Bless,
Lillie
 
 
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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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2014 at 7:42pm
Bayside,

None of us know the magic answer as to which chemo regimes our specific tumor will respond to.  From my experience I had T/C in 2009.  I was Stage 1, no nodes, clear margins, all scans clear.  Apparently some cells must have escaped the original tumor and went to another regional node (not the sentinel nodes that were clear) as 13 months after treatment I was dx with a recurrence to an internal mammary node.  This time I did Carboplatin/Gemzar/Iniparib and achieved remission.  What I don't know and probably will never know is if I had A/C, T the first time, would I have had a recurrence?  Maybe my tumor wasn't responsive to taxanes?  I also have a TNBC friend who was dx about the same time as me with Stage 2a that got T/C and has not recurred.  It's all a crap shoot.  I personally like the idea of adding Carboplatin to Taxol, then A/C and maybe we'll see that more in the future?  They are still trying to figure out TNBC and what's best for us.  Lillie gave you some great advice.  We only get one chance to attack this beast the first time.  TNBC is aggressive and in my opinion you throw everything at it and hope it doesn't come back.  Wishing you both the best as your wife makes her decision.  

Donna
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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BanR View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2014 at 11:01pm
Donna
Got a little worried after reading that you had such a good prognosis, stage 1, clear margins, nodes clear ..yet..it came back :(
the good part it, it didnot spread to any other organ and settled in another mammary node.
To think of it, my diagnosis is similar as yours. Stage 1, grade3, 1.4 cm, 0 nodes, ki 67- 40%. This is such a beast..
Did they mention anything about Lymphovascular Invasion in your pathology report. I was reading somewhere that although LVI doesnt affect the treatment plan but its a prognosis indicator.
also , tnbc is not a single disease rather a family of 6 to 7 kinds of tumors and unfortunately they have not been able to differentiate them clearly. Once they do that, then they will start thinking of  different kinds of treatments!



Edited by BanR - Jan 29 2014 at 11:06pm
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Bayside View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bayside Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2014 at 1:14am
Thanks Lillie and Donna. I've been reading a lot about TC and AC and searching the forum for Taxotere. I understand the concern for a "hard hitting" regime, but the other consideration is that my wife was really wary even to have chemo at all and has finally come round to agreeing to it. After discussing it once again with the oncologist, given her age (70), other complicating factors (Addison's), and considering her overall state of mind and wellbeing, the oncologist is confident the TCx4 will be better tolerated. At this point we're glad to be going ahead and will have to trust it'll work. 

It's hard to read the crystal ball. She hasn't had BRCA testing but is over 65 and has no history of breast cancer in the family, though her brother had lung cancer. One other thing is the path report said it was IDC with medullary features and met all the requirements for medullary cancer except that it was not completely circumscribed. I don't know if that makes a difference.


wife DX IDC TNBC 11/13. Grade 3, Stage 2a. Lumpectomy 12/13. margins clear, 0/2 nodes
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BanR View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2014 at 3:46am
Bayside:
Medullary cancer is a kind of TNBC and it has the best prognosis. Its very slow growing, maybe thats why it didn't reach the lymph nodes inspite of being stage 2a. If its pure medullary, then its a good sign!! Also tnbc is not that aggressive for women over 50, but is very harsh and aggressive for younger women.
But then did they write pure medullary in her report or something like atypical medullary carcinoma?
best wishes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2014 at 8:17am
Bayside,

Given your wife's medical condition and age I can understand all your onc's concerns.  I'm glad she's agreeing to do chemo.  Yes, medullary features have shown to have a better prognosis.  Keep us posted on how she's doing.  

BanR,

No, my pathology report showed no LVI.  I thought I had a great prognosis too with all 5 sentinel nodes being clear, upper outer tumor with great margins, etc.  When I was dx I didn't know anything about TNBC or that cells can escape through the blood stream or to other lymph nodes instead of just the sentinel nodes.  I had the false feeling that all tumors drained to the sentinel node first.  Most do, but not all as in my case.  Yes, I'm hoping we caught it before it went further.  Only time will tell.

Donna
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote LindyE Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2014 at 12:31pm
Donna,  I'm just curious what led to the discovery of the recurrance in the regional node.  Are you routinely scanned? Were you having symptoms?
Thanks.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2014 at 10:54pm
LindyE,

My first onc liked to scan her TNBC patients once a year for the first 3 years.  It was a routine PET scan 13 months after finishing chemo.  No symptoms, I was feeling great, getting my life back together, working out at the gym with a trainer, all blood work normal, tumor markers normal, no lumps or pain, then the PET scan showed an area light up.  Hopefully we caught it early enough for the treatment to be effective.  Most oncs don't believe in routine scans or that it will make any difference in catching it early.  I'm just thankful mine did and pushed me to have the test.  

Donna
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Feb 01 2014 at 1:27am
Hi BanR! I was reading your posts and thought I'd say hi. I was 45 when diagnosed, 5 years ago today. Lumpectomy, 2.2cm, 1 node positive - off the charts aggressive (I told my doc that lump popped up quickly!) 5 wks between surgery and start of chemo, DD A.C. x 4, DD Taxol x 4, 36 rads. Still NED! Not saying I'm 5 years out until September, the anniversary of treatment finished...but I can taste it, lol. Hang in there, it was after the 2nd Taxol that I started feeling......blue. My Dr noticed, she said I didn't "seem myself"  Made me laugh! I said something like, I'm entirely bald, I lost my last eyelash yesterday, I'm queasy yet hungry yet nothing tastes worth swallowing, my bones ache and the hot flashes keep me up at night.... I hope this isn't "myself"! I started an anti-depressant that day which I took for about 3 months. The break between chemo and rads was heavenly. My hair came back faster than I dared hope. And radiation was easy compared to chemo. I hope you heal as quickly as I did and get the same results! 
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: Feb 10 2014 at 10:49am
hi kellyless..Its wonderful to hear from you and so happy that you are close to 5 year mark!
Even i m doing 4 dd ac and 4 dd taxol. Except for a hiccup, the 4th and last ac's dose had to be reduced by 10 percent and had to get delayed by 6 days, because my counts refused to come up even after the neulasta shot and i had to get injections again, which my onc says cannot be done repeatedly..hence the deviation. But he says since it was the last ac, hopefully it shouldnt affect the outcome... but who knows.

Couldnt post since sometime..i hope all of you are doing good! 
19th feb will be my last chemo( taxol), and then I guess the fear of recurrence etc will start coming in. 
I hope I can cope with it and with a wonderful community like this, am sure I can always find support
Thanks to you all again!!

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