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Stage 4 options outside of chemo

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caregiver20 View Drop Down
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    Posted: May 19 2016 at 4:26pm
Hi Everyone, 

I'm a little stuck here, and was hoping folks on the boards might have some recommendations for me. Scans earlier this week have showed that my wife, who was diagnosed with TNBC in 9/2013, has had another progression. Her PET/CT showed that her cancer, which had been contained to a number of lymph nodes in her chest, has progressed to her liver and right lung. We're at a bit of a loss, at this point, and feeling quite stuck, so I was hoping folks might have some recommendations. 

She has previously had a double-mastectomy and received a range of chemos, including Taxol, AC, carboplatin, paclitaxil, and Xeloda. When she had her first recurrence, most of her doctors deemed her cancer both chemo and radiation resistant, and at this point she has unequivocally stated that she is not interested in further chemos (Eribulin was recommended by some doctors, although they indicated they had no confidence it would have any effect). She also has an autoimmune disorder, which tends to exclude her from the vast majority of trials, although we continue looking. She's also been on a slew of immunotherapies and other approaches through an independent oncologist, including Proleukin and Boniva (to limit bone mets), Leukine (to stop lung mets), TM (for copper depletion), dendritic cell therapy, and a range of others. Finally, she lacks androgen receptors, PDL-1 or PD-1 receptors. 

As a result we're kind of lost as to next steps. Her independent oncologist has little more to offer, while traditional oncologists seem to only recommend chemo. We seem to be just sitting, waiting for her to die, and aware that we may have just a few months, or maybe years if we're lucky. It's depressing and confusing. Has anyone experienced similar situations? Did you find any options? If not, how did you come to terms with the fact that no more options seem to exist? What did you do? 

Thank you much for your help. 
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Jacklin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2016 at 8:50pm
Dear Caregiver20, I am so sorry to hear this news. It hurts me to read this for you both and while I cannot offer any options, I just wanted to let you know that you'll be in my thoughts and prayers. Much strength for each day.
Jacklin
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 20 2016 at 6:42pm
To Caregiver20 , it hurts me also reading about your wife and what you are going thru, I wish I had some advice, if I hear anything from my wife's doctors I will post it regarding new therapies. Keep in touch. G.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote caregiver20 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2016 at 8:03am
Hi Everyone, 

Just wanted to send an update on my wife, in case it might help others in this situation. We reviewed a few more possible receptors (HLA1, HLA2, HLA29) to see if we could alter her immunotherapy, but unfortunately she was negative for these (she's observed that after also being negative for androgen, PD-1, and PDL-1, her cancer is actually "bajillion negative breast cancer"). We've decided to use the cyberknife radiation approach to destroy the tumors that are visible, as some in-vitro research has shown that radiation in combination with her dendritic cell therapy may help slow this thing down. In the meantime we're adjusting some of the treatments she's on to improve her quality of life. Her copper depletion seemed to impacting her eyes, muscles, and skin, as it apparently effects collagen in those regions. We've also gotten rid of a few of her more expensive treatments in the hopes that it'll make life a little easier. 

As with many of you, the hope is that we can slow this thing down somewhat. Our 10th wedding anniversary is next July, and we'd really like to celebrate it together!
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Jacklin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2016 at 8:06pm
Hello Caregiver20,

Thank you for updating us, I was wondering what had happened. Again I am sorry to read that your wife has 'bajillion negative BC". I honestly don't know what to say right now, I am completely at a loss for words. I will continue to pray for you and your wife, that there will be something that the medical community can do to help, and, so that you will celebrate your 10th wedding anniversary together next year, in good health.

Much strength for each day,
Jacklin
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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