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Rare TNBC

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Cuff101 View Drop Down
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    Posted: Apr 25 2016 at 7:50am
I am seeking some severe guidance on where my journey now needs to head. Last year in February, at age 39, I was diagnosed with TNBC and received months of chemo treatment that ultimately in the end was ineffective. I had emergency surgery that consisted of a double mastectomy and my entire lymphatic system removed. Primarily because my aunt died at age 45 from metastasis BC. In approximately 4 months, with chemo, it had grown into the size of a softball and cancer in 18 out of 27 lymph nodes. Needless to say, I am pretty confident my doctor was caught with her pants down. Everyone has underestimated my cancer. However, I had a successful surgery. My family was elated, especially my 8 y/o daughter and my 11 y/o son. I was a power house and returned back to my job as a Deputy Sheriff by November. I was monitored closely with blood tests sent off to the Mayo Clinic to test for circulating cancer cells. After two tests, as recent as Dec 2015, I was at 0 circulating cancer cells. In March of this year, I felt I was possibly getting an upper respiratory issue/pneumonia and immediately went to my oncologist. I went for follow-up chest x-ray after being on antibiotics and from what they say- they wanted to make sure I only had scar tissue from radiation, so I was sent for additional scans that eventually led me to a PET scan. The PET scan revealed that the cancer was in my liver, abdomen, and possibly some lymph nodes. I was immediately transferred over to UNC Chapel Hill where they are evaluating me for a clinical trial. After they tested my tumor last year, there was no known treatment for my cancer. UNBELIEVABLE. One of the genes showing up in my tumor, CREB-BP, the UNC doctor wasn't even familiar with. I am waiting now to see if I am eligible for a clinical trial, but also reaching out to other facilities. Apparently, if I had not caught it, I would not have made it until Christmas. I am totally amazed that with all the research and money for cancer, that we are not even seeing an automatic direction to go in for treatment. My family and friends are great warriosr seeking out whatever we need to do to help find any kind of cure for this. I have accepted that I will be a science rat in the name of rare TNBC because we have to have something to help combat this.
Any guidance on this is greatly appreciated! Facilities that specialize in this cancer, treatment etc.
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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: Apr 25 2016 at 8:46am
Cuff101,

I'm so sorry you are dealing with this again.  I really don't know much about the CREBBP mutation.  UNC Chapel Hill is a great facility and Dr. Lisa Carey and Dr. Carey Anders are both TNBC specialists.  

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 Guests Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2016 at 3:31pm
Thank you for posting here. You are one of a kind. Sounds like you have some of the best cancer specialists in the country working with you. And we are all here rooting for you too. Praying for you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2016 at 11:20pm
Pardon my ignorance here, but I'm wondering how the mutation is defining your tumor. We're told there are 6 subtypes of Tneg, that each of which respond better/worse to different treatments. I would (naively, I'm sure) assume that you have one of those subsets that has the extra complexity of a rare mutation, hence the confusion.

I've lived a life of having more than my share of 'never seen this before' ailments and I have an inkling of how much you must be feeling that you're going to have to do much of your own research. I get it.

But while everyone is focused on the uniqueness of your dx, please don't let the other parts of your disease be put on the back burner.

Whatever your team can do to zero in on the determination of what subtype you have...and who knows, there may be more undetected characteristics they haven't recognized yet; will help you out.

Depending on your mobility, you might try a 2nd/3rd opinion at MD Anderson or Stanford. Oprah set up a group of private jet owners in business who will offer free rides to cancer patients when they have seats available. Every opinion you get will educate you.

I was on a clinical trial and to this day I'm still certain it saved my life so I wholeheartedly support your thoughts on joining one. Take your time figuring out which one and remember that not every clinic has access to every clinical trial. All the more reason to get a 2nd/3rd opinion...those clinics may offer a trial that would match your needs better.

For whatever it's worth, please take a look at Host Defense 'turkey tail' to take along with your chemo. It's gone through clinical trials and showed that it enhanced the effectiveness of the chemo. You can find it online.

Last, you'll benefit by getting your stress under control. You need to focus now so do ask your team about getting a med for your stress. Getting stress under control is amazingly empowering and it's something you can do!

Please please stay in touch!
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2016 at 12:04am
Mainy,

I don't think CREBBP mutation is a sub-type of TNBC, but rather a genetic mutation.  I found a few references, mostly to leukemia, but nothing with breast cancer.  


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 mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2016 at 9:39am
Yeah, I was looking too Donna and kept getting references to Autism, so makes me all the more curious which subtype her Tneg is and what makes it rare.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cuff101 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2016 at 11:25am
Your information was extremely valuable. Right now I am waiting to hear from doctors if I have the LD-1 that makes me eligible for this trial. We are reaching out to MD Anderson, because I don't know much, but I do know that I need someone who has seen this before or has worked with it. Thankfully, my husband is a nurse. Yes, we are a bit backwards. I carry the gun, he fixes people but we help eachother. He has been strong along with the support of my family, which there are no words for. When you sit and listen to doctors it can be very overwhelming and you can feel the end is near. No one, however, knows the power and path of the good Lord. I know that I have been put on this path for a reason. I know that there needs to be something that helps and ultimately cures this. Thank you so much for your feedback.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cuff101 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2016 at 2:11pm
I will be having my biopsy of my liver tomorrow to affirm if it is the same cancer. If it is then we know chemo is not an option and not sure at all what will happen if it is a different cancer. All I know is this aggressive and fast and I need to find something.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2016 at 4:27pm
I've promoted the Steve Jobs approach several times here and I'll pass it along to you. Apparently he could be a SOB to his employees in the sense that he always pushed them hard to do better.

That said, 'no more chemo'? Hold on a minute. How about 'we now know that the chemo that you had before was not effective so we have a leg up on knowing we need to try a different cocktail'? It's one more reason to explore what subtype you have had. Of course I'm jumping ahead because you haven't had the biopsy yet to know if it's Tneg or not.

But anyway, after they give you the results & options for a game plan, please do feel empowered to ask for more options beyond what they just gave you. Push them for more. No more chemo is not an answer you have to accept.

Oh h**l, I need to go into the archives and find Krakatoa...note to self.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Im praying for you.God will direct these Drs. In the right direction. It took 5 docs 3days to figure out what was wrong with me and what to do about it. He knows the answer and He will help you and other people too who may have this genetic difference and dont know it.
God causes all things to work together for good.
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Cuff101 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cuff101 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2016 at 9:43pm
I have finally got my summary together of my current situation. Please feel free to pass on to anyone that could help with this. I'm sure the right people will understand. I can't attach the file, so I will just copy the summary.   I have additional information, timelines, if needed, message me and I will email as needed. Thank you all so much for your support.   D

I was first diagnosed with invasive ductal carcinoma, intermediate grade, and ER negative, PR negative and HER-2 receptor negative on 02/06/15. She received 4 cycles of AC [Adriamycin/cyclophosphamide] and one cycle of Taxol starting 02/25/15. She was switched to Carbo/Taxol due to lack of adequate response to breast mass on 05/07/15. Her second cycle was completed on 06/05/15 however the third cycle was withheld due to clear clinical progression noted on exam. A bilateral mastectomy with right axillary node dissection (positive sentinel node biopsy) was performed on 06/30/15. The final pathology noted, “Invasive ductal carcinoma. Upper outer and lower outer quadrants involved Histologic grade III. 8.5 x 6.5 x 4.5 cm; there is minimal treatment effect. No DLl/LVl, all margins negative (0.3 cm deep, at least 3 cm from all other margins). One positive intramammary node (1/1). 4/4 right axilla SLN positive with extracapsular extension. Thirteen positive nodes (13/22) in right axilla dissection. Size of largest metastasis 0.7 cm, extracapsular extension present. The total lymph node count is 18/27. ER-/PR-/HER2- on current specimen.” On 07/07/15, Foundation One assay shows 3 genomic alterations (TP53, CREBBP, RB1). On 08/13/15 through 09/29/15, radiation therapy was performed. Use of 3-D conformal tangential technique to the entire right chest wall and upper internal mammary lymph nodes to a total dose of 5400 cGy. The right supraclavicular nodes were irradiated to a dose of 5000 cGy. Boost to the mastectomy scar with very generous margins up to total dose of 6600 cGy. On 03/23/16, a chest x-ray was performed due to upper respiratory symptoms and persistent cough. She was diagnosed with right upper lobe pneumonia. A follow-up chest x-ray on 03/23/16 recommended a CT scan to rule out underlying mass. A PET CT on 04/14/16 identified new 3 cm hypermetabolic lesion to the liver and left hilar and mediastinal lymph nodes. Oncologist at University of North Carolina diagnosed likely stage lV TNBC metastatic to the liver and possibly peritoneum. She is currently being considered for research study pending biopsy

whew
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2016 at 10:16pm
Cuff,

Wow, I just read your report.  You've been through a lot.  I hope you can get into a research study or clinical trial.  Wishing you the best.  Keep us posted on your next step and treatment plan.

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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