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Leahstuffle View Drop Down
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    Posted: Apr 24 2019 at 1:09pm
Hey, friends. I'm feeling pretty confident that I'll be diagnosed stage 4 in the upcoming weeks. I was diagnosed stage 3b initially with a 13cm tumor and three positive nodes while I was pregnant. I wasn't able to get diagnostic scans because of the pregnancy, but now I'm on the other side of bmx and I had a ct scan that showed tiny spots on my liver. I had a second radiologist look at the scan and he believes there are bone mets in my spine. It was probably there beforehand.
At this point I'm 32 years old with a 13 week old baby and an almost 3 year old. I'm looking for you guys who have been able to live with your mets or you achieved NED. Please help me have some hope!!
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Marymom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2019 at 10:11pm
I read something about metronomic chemo. Also, the neuvax/herceptin combo.  Keep researching...they have many clinical trials.  

I am not as knowledgeable as many on this site. These are just things I have read about.  Stay strong and research...new things are coming everyday!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2019 at 10:35pm
I just realized...someone posted on here about Dr. Ben Chue and Metronomic chemo.  I believe the post mentioned a 15 year survivor of stage four.  Very encouraging...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2019 at 1:33pm
I'm so very sorry Leah. Weren't you consulting with an MD Anderson oncologist while pregnant? My suggestion is to head back there, see if you can get an appointment with one of the oncologists specializing in our disease. Steve got me into Dr. Vicente Valero, he would be My first appointment of I was diagnosed again. The stuff being posted about what Dr. Chue is doing sounds interesting as well. But if you do already have a relationship with MDA, you should be able to get in quick, find out what they are offering for your particular situation.  Please stay in touch, let us know what you decide. 
Kelly
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 grramz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2019 at 1:44pm
I have just recently been diagnosed Stage 2 TNBC! I'm TOTALLY devastated. I'm a 3rd generation cancer victum! I say the "v" word not as death. My mother and her mother are survivors. I'm going to have a DBL mastectomy for sure.i met with oncologists and I didn't care for their attitude, so I am meeting with 2 others. I am hopeful.I am reading everything and it is overwhelming!

Edited by grramz - Apr 25 2019 at 1:45pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2019 at 2:31pm
Did you inquire about Xeloda or carboplatin? and I will be praying for you.  I would also get second opinion from MD Anderson. I believe there are many stage 4 who achieve NED for many years
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2019 at 10:33pm
My update for now: my doctors think my father in law is overreaching with low resolution scans. I'm having a PET scan tomorrow. How could one doctor see nothing wrong with my skeleton and my father in law, who is a competent radiologist, see lots of evidence for it? My tumor markers are pretty low, too, so I'm going to wait until we see these results. My oncologist has been fantastic, instead of blowing off the unofficial reading from my father in law, she is following up. The thing that is certain is there is something showing on my liver, and my back has pain. All of that could be explained by the pregnancy, but who knows? Literally nobody right now!!! 

Edited by Leahstuffle - Apr 25 2019 at 10:35pm
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Leahstuffle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2019 at 5:33pm
Alright, my father in law was correct. I have stage 4 TNBC in my liver, spine, skull, and pelvic bone.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HopefulToday Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2019 at 11:47am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BlueWater Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2019 at 11:50am
Hi Leah,
Im not a long term survivor, Im just starting the journey myself.  My oncologist informed me on my last visit last week that Stem Cell treatment has been approved for Stage 4 breast cancer.  Its something to look into.  My thoughts and prayers are with you and your family.  
Susan 
Dx TNBC IDC 12/18/18 (age 53), Stage 1, Grade 3, 1.6cm, 0/5Nodes, BRCA-1 Neg, BRAC-2 inconclusive, Left breast. Double Mastectomy w/ recon., Starting TC x 6 on April 26th.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HopefulToday Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2019 at 11:51am
I am a patient of Dr Chue's. He is a kind and gentle human being. Please google him and see what others have written. When you speak with him, you will think you are the only patient he has. I can't recommend him enough. I saw 6 oncologists before I went with Dr Chue and Lifespring Cancer Care.  https://journals.lww.com/md-journal/Fulltext/2019/04190/Case_report_of_long_term_survival_with_metastatic.63.aspx

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Post Options Post Options   Thanks (0) Thanks(0)   Quote HopefulToday Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2019 at 11:54am
I don't know where you are located, but people consult with Dr Chue from all over the world. I saw 6 oncologists before I went with DR Chue. What he told me about the metronomic Chemo made so much sense.  Cancer can become resistant to the drugs, he told me it is important not to let time go by between the infusions so the cancer does not become resistant. Also the lower dose chemo is easier in most cases for the body to tolerate. I had a combination of chemo and immunotherapy. So far so good. I can't recommend Lifespring Cancer highly enough. 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2019 at 3:56pm
Thank you!! I think it's a super cool idea
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DebraB Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2019 at 10:34pm
I was first diagnosed with TNBC 12 years ago.  The tumor was 1/4 of an inch and was removed and I had 5 days of radiation, no chemo.   

7 years later I developed pain in my upper chest.  I had a new tumor, still TNBC in my rib and breast bone.  Still very small.  Was on a clinical trial plus paclitaxol for 16 months.   Tumor was reduced to minimal size and stayed that way three more years.  Lately developed a small spot on my lungs.  After biopsy it was determined that I am eligible for immunotherapy together with chemo.  The FDA just approved this combination for TNBC in March of this year.   

Has anyone else been treated with this combination?  Also has anyone lived with active MTNBC for more 5 years?  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Eviemom Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2019 at 4:14pm
Hello, my daughter in law was diagnosed with stage 4 about one month ago.  We read Dr. Chues article and found it very interesting and promising.  Do you mind me asking how long you have been a patient of his and how long you have  had stage 4? We are just starting to collect information. We live on the other side of the country. She is getting metronomic chemo right now but we are researching everything. Thank you and I wish you all the best and send love and hope. Heart
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Eviemom Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2019 at 4:15pm
Hello, my daughter in law was diagnosed with stage 4 about one month ago.  We read Dr. Chues article and found it very interesting and promising.  Do you mind me asking how long you have been a patient of his and how long you have  had stage 4? We are just starting to collect information. We live on the other side of the country. She is getting metronomic chemo right now but we are researching everything. Thank you and I wish you all the best and send love and hope. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HopefulToday Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2019 at 4:56pm
I sent you a private message. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote britricker10 Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2019 at 10:47am
I just saw this forum, but just wanted to check on you, Leah. How are you doing? 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2019 at 12:20pm
Hello! 
I definitely have mets in my bones and liver. I recently underwent three surgical procedures in the last two weeks. I don't recommend that, but I think it will overall be very helpful. 
I had a bone biopsy on my hip, a kyphoplasty on my thoracic spine (this was so helpful and wonderful) and my tissue expanders removed and replaced with implants. 
I have a significant amount of pain as I heal, but I will start PT soon.

The most interesting thing that has happened was I did Guardant 360 testing, which is a cell free DNA test. The results showed that I have two specific protein overexpressions that are usually related to hormonal positive breast cancer. Also, I have a germline mutation (ATM) that has recently shown excellent results with PARP inhibitors. My oncologist flat out said these results are a miracle. There are EIGHT!!!! targeted therapies already FDA approved. 

I'm trying to stay positive, but the pain and restrictions from multiple procedures is very difficult for me. I am a hard worker, so I feel like I'm wasting away waiting for the next thing.

Thank you so much for asking, I was doing poorly this morning, and getting to talk about the targeted therapy options has turned my attitude around.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2019 at 12:35pm
Leah,

I'm so happy that you have so many options for targeted therapy.  That is excellent news! 

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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