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Any long term survivors?

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Category: TNBC Forums
Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13518
Printed Date: Jan 23 2020 at 12:15am
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Topic: Any long term survivors?
Posted By: Leahstuffle
Subject: Any long term survivors?
Date 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!!



Replies:
Posted By: Marymom
Date 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!



Posted By: Marymom
Date 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...


Posted By: Kellyless
Date 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!


Posted By: grramz
Date 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!


Posted By: James123
Date 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


Posted By: Leahstuffle
Date 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!!! 


Posted By: Leahstuffle
Date 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.


Posted By: HopefulToday
Date Posted: Apr 27 2019 at 11:47am
Here is the link  https://journals.lww.com/md-journal/Fulltext/2019/04190/Case_report_of_long_term_survival_with_metastatic.63.aspx" rel="nofollow - https://journals.lww.com/md-journal/Fulltext/2019/04190/Case_report_of_long_term_survival_with_metastatic.63.aspx


Posted By: BlueWater
Date 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 


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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.


Posted By: HopefulToday
Date 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" rel="nofollow - https://journals.lww.com/md-journal/Fulltext/2019/04190/Case_report_of_long_term_survival_with_metastatic.63.aspx



Posted By: HopefulToday
Date 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. 



Posted By: Leahstuffle
Date Posted: Apr 27 2019 at 3:56pm
Thank you!! I think it's a super cool idea


Posted By: DebraB
Date 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?  


Posted By: Eviemom
Date 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


Posted By: Eviemom
Date 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. 


Posted By: HopefulToday
Date Posted: May 03 2019 at 4:56pm
I sent you a private message. 


Posted By: britricker10
Date Posted: May 17 2019 at 10:47am
I just saw this forum, but just wanted to check on you, Leah. How are you doing? 


Posted By: Leahstuffle
Date 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.


Posted By: 123Donna
Date 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



Posted By: Leahstuffle
Date Posted: May 17 2019 at 1:03pm
Thanks, Donna! I don't know the efficacy of each of the options, but I am relieved to have something that isn't *just* chemo to work with. I'm excited about a multi pronged approach.


Posted By: britricker10
Date Posted: May 17 2019 at 9:53pm
That's very good news, Leah! This will be an encouragement to many. I know you are in the thoughts and prayers of many people. Best of luck on this journey! 


Posted By: Leahstuffle
Date Posted: May 21 2019 at 4:15pm
Hey friends, I just got results that I am PD-L1 positive and will start abraxane and tecentriq next week. I also have low platelets (75,000) and my hematocrit came back borderline low, too. The concern is bone marrow metastases. I was really bummed to hear that and it makes me very nervous. Hoping for an excellent outcome from the immunotherapy!


Posted By: britricker10
Date Posted: May 23 2019 at 8:02pm
Good luck! Hopefully all goes well! 


Posted By: MikeW
Date Posted: Oct 11 2019 at 11:43pm
My wife (TNBC with bone mets only) has very a high PDL-1 and is being considered for Atezolizumab (Tecentriq). However, she's had brain surgery followed by Whole Brain Radiation and is very weak. Another thing she's extremely allergic to Taxol which is usually given with the Tecentriq. Is there anything else she could take in substitute?


Posted By: JMJ
Date Posted: Oct 20 2019 at 10:08pm
MikeW, I too had brain surgery and whole brain radiation a year later, I also had cyberknife to the tumor bed in my brain. I was NED after cyberknife. I had a recurrence in my brain in a different area, then had the whole brain radiation. 

I've been on Xeloda for almost a year, I've not had any spread into my body. How did the whole brain radiation do for your wife, or has she had any brain scans since treatment? The whole brain radiation either shrunk or stabilized all the cancer on the lining of my brain. I have one lesion that filled with fluid so we are watching that to make sure it doesn't press on my brain too much or they will drain or remove it.

Personally, the steroids they gave me for the radiation were the hardest part. I didn't realize how many side effects they were causing until I started weaning off of them! Fatigue was a side effect of the steroid, and surprisingly, weakness of the quadriceps is another specific side effect. And I thought I was just out of shape and weak because I had gained so much weight from the steroids. The steroids also made me very irritable. Once that started to lift during the weaning off of steroid process, I was so glad to know it was Med related. Long story short, if she's on a steroid, research the side effects to help you both get through it. The brain surgery was more exhausting than the radiation for me, but again I was on steroids after the brain surgery too, and had to switch to a different one because I had every side effect that you are supposed to call your dr about, but I didn't know for months because I didn't read the paperwork the pharmacy gave me. I was just out of it mentally and my brain just couldn't make connections! 

Oh and the #1 advice I got when I needed it was to get a neuro oncologist if you haven't already. If you haven't that might be the missing link. Now I see that your wife had bone mets alone, nothing in the brain? So was the radiation for bone mets to the skull? If so, are there oncologists that specialize in bone, like a bone cancer specialist she could see? 

I had no idea that my medical oncologist only treats from the neck down, and that it's the the neuro onc that treats the brain and spine. What I like best about the neuro onc is that he "gets" me, he's a neurologist and an oncologist, so all the neurological deficits are addressed along with treatments, he specializes in treating the brain, and is up to date on all the options (I go to an NCCN facility, and recommend that).

I hope that helps a little, and I know it's a long reply, thank you for your patience with me.




Posted By: 123Donna
Date Posted: Dec 20 2019 at 11:00am

Case report of long-term survival with metastatic triple-negative breast carcinoma

Treatment possibilities for metastatic disease

https://journals.lww.com/md-journal/Fulltext/2019/04190/Case_report_of_long_term_survival_with_metastatic.63.aspx" rel="nofollow - https://journals.lww.com/md-journal/Fulltext/2019/04190/Case_report_of_long_term_survival_with_metastatic.63.aspx




-------------
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



Posted By: claudepa
Date Posted: Jan 05 2020 at 12:11pm
There are 7% complete remissions in the IMPASSION 130 clinical trial for metastatic TNBC (10 % for patients which are positive for PD-L1 in the test of immune cells infiltrating the tumor.). The treatment is atezolizumab and abraxane. Among these complete remissions there are now long term survivors. My wife had a different immunotherapy treatment in Europe and she is in complete remission 42 months after begining the treatment.



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