Metastatic TNBC - any survivors?

rahimaw

Dear Sisters,

I have just been diagnosed with TNBC mets (brain lining, lungs, spine, pelvis, ribs, liver).  My research has so far revealed that life can be lengthened with chemo (though not a cure).  I had a horrible experience with chemo the first time around (original diagnosis, 26 months ago, Stage 3, A with 4 lymph nodes).  At that point, I did everything the mainstream docs wanted me to (surgery, lumpectomy, chemo, radiation).

If there is even ONE person out there who has survived a few years with TNBC mets and has not had chemo to do so, I would love to hear about her.  (My doctor says I have one month to one year).

I am considering doing lots of alternative therapies (raw foods, H2O2, Budwig-Cellect diet, etc.) and wondering if its worth it.  Could some of these at least lengthen my life a bit?

Rahima

formygirls

Rahima,

I  just wanted to let you know that I have laso been just diagonsed with TNBC mets to liver, nodes, lungs and bones--last Friday. I do not know about brain yet. I would be interested to learn what you find out. I have heard my inspring stories on this board with chemo,

LilSchatzie

Rahima,

Don't let a doctor put a time stamp on you!  There is lots of hope out there!!  Hugs to you!

suz45

My first "time stamp"  was a few months to 2 years. Ummmm no! Am just over 1 1/2 years now and last scan showed all tumors shrinking. Im on Xeloda & Clodronate with minimal se's. Hope you find what works for you. (im TNBC & BRCA1 gene)

Hugs Suz

bkglenn50

Wow girl, your onc sounds gloom and doom. I have mets to liver. Ive been ned for two years now. I am on xeloda, which is chemo but pill form. It has been very easy on me. No hair loss either...I hopeyou find some comfort here, Hugs,Brenda

hydeskate

I guess you are look for me then, dx in 2008 with Stage IV TNBC, I have spent the last 2.5 years on a Chemo Break. My last Chemo treatment was Oct 2009, my last three scans had come back clean , so the doc's said I could have a break, I get scaned/x-ray every 3 months.

I also was recently dx with Sjogren's Syndrome, currently waiting on results of my Bone Scan, to determine if the pain I have been having is Arthritis or Bone Mets.  The blood test came back good as well as my liver function test.

lovingspouse

We're trying metformin.  Only a few weeks, but, so far, nothing positive.  We're 5 months post diagnosis.

banjobanjo

Hi,

Don't have any advice or answers but wish you well and that you find the support and info you want from here. 

3littlegirls

Hi 

I just wanted to let you know I do a bunch of alternatives. High dose Vit C, Mistletoe and supplememtns.  I sent out a link to a Naturopathic Oncologist. I will try and find it for you.  I have heard that Triple Neg patients often times respond really well to alternative treatments. So I think you are on the right track.  PM me if you have any questions or think I can help.

Never give up my dear. There are so many clinical trials that seem to be focusing on triple neg.  I hope you respond well to your treatment and it gives you years.

Hugs,

Michelle 

LRM216

Along with all the wonderful info you have and will continue to get on this thread, please know that over at Inspire.com there are quite a few wonderful ladies that can help you as well.  Quite a few TNBC over there that can supply you with more information and their experience with treatments.  I wish you nothing but the best,

Linda

joaniji

Welcome - there is hope!  I was originally diagnosed with hormone positive metastatic bc in 2008 but when the cancer spread to my liver in Aug. a new biopsy determined that I was TN.  I was definitely frightened and overwhelmed when I heard that news but here I am 5 months later.  I am on an oral chemo called Xeloda.  There is a separate thread devoted to this chemo, if you are interested.  My scan just a few days ago showed that the liver tumors were all gone.  Please don't give up hope!  I hope that things go well for you - take good care. Best, Joani

bottkota

Hi!  I am here still fighting TN mets.....27 months later!  Currently NED but still doing treatment.  NEVER let anyone tell you how long you have to live....last time I checked there is only 1 God and He is in control.  Our doctor's can give us an idea....but even they don't know.  Everyone responds to treatment differently.  Us trip negs to band together and defy those stupid stats!  let's be part of the positive side of those numbers....because really someone has to be part of the positive to get there average numbers, right?  so let's be those positives!    hang in there.

Cathi

gillyone

I apologise for butting in, but I think the OP is looking for anyone with metastatic TNBC who has NOT done chemo after the stage IV diagnosis and is still here to talk about it. Also I get the feeling that the "time stamp" from her onc refers to not having chemo now.

Keller27

hi there! My mom was diagnosed with TNBC in 2014. She had lumpectomy chemo and radiation. Just this past July (7 months ago) she had a mammo that was perfect and this past August (2018) she was also diagnosed with sjogrens. Then she noticed a bump in her right lower back that all doctors thought was a lipoma. She just had a lump pop up in her breast (not the breast with original cancer) this past week. She had a biopsy of the breast which is pending and the lump from her back removed and sent to path. The lump from her back came back positive as cancer most likely metastasis from her TNBC. We are devastated. Her pet scan isn’t on Monday.

Two things: I wonder if sjogrens could be related? What pathways were affected for you?

Also was wondering if any of you had red flags in your blood work or any symptoms before you were diagnosed with TNBC metastasis?

Thank you so much

Cure-ious

some new stories in the press for those with metastatic triple negative cancers:

https://www.kshb.com/news/local-news/cynthia-newso...

https://www.healio.com/hematology-oncology/breast-...

Bestbird

Unfortunately Sacituzumab Govitecan was rejected by the FDA due to production-related (not efficacy) issues and may not be available for another 2 - 3 years. The CEO of Immunomedics, the manufacturer, recently resigned. https://www.healio.com/hematology-oncology/breast-cancer/news/online/{c13beab9-e8a3-47dc-9c06-aff75f299afb}/fda-rejects-sacituzumab-govitecan-for-triple-negative-breast-cancer

That said, there are many interesting options in the pipeline, as per the list below from my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available free of charge in .pdf format.

• Abraxane (nab-paclitaxel) and Carboplatin combination
• ABT-888 (Veliparib) (Not Yet FDA-Approved for MBC Patients)
• Atezolizumab(Tecentriq or MPDL3280A) (Not Yet FDA-Approved for MBC Patients)
• Bicalutamide (Casodex) (Not Yet FDA-Approved for MBC Patients)
• Enzalutamide (Xtandi or MDV3100), an Androgen ReceptorBlocking Therapy (Not Yet FDA-Approved for MBC Patients)
• IMMU-132 (Sacituzumab Govitecan): (Not Yet FDA-Approved for MBC Patients, but has been accorded Breakthrough Therapy status)

• Keytruda ((Pembrolizumab), a PD-1 Inhibitor Immunotherapy Drug (Approved in a Limited MBC Setting)

• Melatonin
• Neratinib, a HER2 Targeted Drug being studied in TNBC (Not Yet FDA-Approved for MBC Patients)
• Rose Hip Extract
• SGN-LIV1A (Not Yet FDA-Approved for MBC Patients)

• Tetrathiomolybdate (TM), a Copper Reduction Drug (Not Yet FDA-Approved for MBC Patients)

• Vantictumab (Not Yet FDA-Approved for MBC Patients)
• Zejula (Niraparib) and Keytruda (Pembrolizumab) (Zejula is Not Yet FDA-Approved for MBC Patients)