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Metastasized TNBC - what was your treatment option?

Metastasized TNBC - what was your treatment option?

Posted by Lyne on Nov 16, 2019 9:47 am

TNBC has now spread to pleura and lung.  Current plan of "treatment" is for maintenance:  Pleural catheter drain and low dose of capecitabine.
I meet with my MO on Tuesday and wondering if others with similar experience have received a different treatment?
I'm in southwest Ontario, attending at JCC.

Re: Metastasized TNBC - what was your treatment option?

Posted by Cynthia Mac on Nov 17, 2019 7:56 am

Hi, Lyne‍ , Have you tried using the search function here on the site? I did a search on “TNBC” so I’m going to tag ashcon‍ Because she is someone who came up in one of the posts.

She may know others on the site who have advanced stage TNBC.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Metastasized TNBC - what was your treatment option?

Posted by ashcon on Nov 17, 2019 10:08 am

Hi Lyne

Hello again! It's good to hear from you again, though I wish it was not for this reason. 
When did you discover this mets? 

I am currently NED still (I hope!) so can't share any personal insights on mets, but I found the information from Triple Negative Foundation (out of the US) very helpful on almost any topic related to TNBC. 
They have a community forum,  just like this one on Cancerconnections, but exclusively for women with TNBC. 
I found this discussion forum. I'm going to plow through this myself  but thought I'd share with you. 
TNBC Metastasis /Recurrence

​​​​​​I'm in SW Ontario as well... Being treated at Grand River Cancer Centre.
It's crappy that we share a similar type of breast cancer, but there's something comforting about knowing we share a geographic area. 

Reach out anytime, and I hope it's ok if I reach out to you as well. I dread this aggressive disease. When I had a prophylactic double mastectomy 2 years ago, my MO said "why bother?" She said she was more concerned with mets than recurrence or new occurrence. Those words haunt me every morning when I wake up.
Do you have any advice for me on symptoms to watch out for, or to mention to my MO? 

Ann (ashcon) 
---- "Nothing ever becomes real till it is experienced." ----

Re: Metastasized TNBC - what was your treatment option?

Posted by Lyne on Nov 18, 2019 8:17 am

Thank you both Cynthia Mac‍ and ashcon‍ . 
I will look up the link provided.

In response to your question ashcon, I found out last Monday, the 7th, when I went to my GP thinking that I had bronchitis or pneumonia because I could not breathe.
As for the real answer, I, like you, kept wondering when the other shoe would fall, when I would be told that it was back, and how the hell would I know - given that they do not test after treatment of TNBC.
It is a difficult balance, I found that talking to my support people, my friends, hubby, some family members, helped because they allowed me to voice my fears.  
For others, I adopted the "Fake it til you make it" approach.  There is no easy answer, it is difficult to bounce back after being knocked out of the park with the diagnosis.  
But you know what?  Many do not have recurrences, no mets, no nothing.  That's what you need to concentrate on, and hope for.  I can't believe your MO said Why Bother...  We don't all die of this frikkin disease, people with TNBC do survive.  If you make it 3 years without recurrence, you have a good chance, 5 years, the probability of you getting cancer again are nil.  That is something to look at.  My MO said "We treat to cure" and that's how I was moving forward.
As for symptoms, I'm a very bad one to ask as I don't know.  The fatigue and the coughing were definitely my clue this time, but then, I thought it was just bronchitis and/or pneumonia.  
I think that denial is great 😁
I'm here, if you want to reach out.  I'm not often online, but I'll get the email if you tag me.  
PS: Did you read the book that Lacey talked about: Picking up the piece and moving forward?  It did help a bit. 

Re: Metastasized TNBC - what was your treatment option?

Posted by ashcon on Nov 18, 2019 4:55 pm

Hi Lyne

Thank you for a little more background on when and how you discovered your mets. 
It does help me, in that it confirms what my MO has told me so far. 
I sincerely hope they discover a post-treatment soluttion for TNBC patients someday (as they have for hormone receptor + and HER2 + patients).

Did you find out anymore info on your original question about the treatment proposed for you (pleural catheter drain and capecitabine)? 

Yes, I have that book, Picking Up The Pieces. I love it and recommend it to anyone who will listen to me rant about it. Though I get it that it may not be for everyone; it seems to cater to people who have gotten the "all clear" after their treatment is done, versus those who are living with advanced /metastasized cancer. 

Good luck with your MO visit tomorrow - I'll be thinking of you. Let me know what happens. Information is power, especially when shared with others! 

---- "Nothing ever becomes real till it is experienced." ----

Re: Metastasized TNBC - what was your treatment option?

Posted by Treepeo on Nov 18, 2019 6:01 pm

Hi Lyne‍,

I have TNBC with mets in both of my lungs.  Initially, my oncologist seemed to be leaning towards maintenance only, that being more chemo.  But I asked to see a radiologist.  After meeting with her, she met with my oncologist.  Now, the plan may have changed.  I have another CT scan scheduled for the end of this month.  If the mets in my lungs have not grown or multiplied, then we will proceed with my double mastectomy and then radiation to my lymph nodes and my lungs.  If my lungs are not stable, then he will put me back on chemo.

While I can understand why they are reluctant to operate on those of us with mets, because the cancer has already spread throughout our bodies, my feeling is this.  I know I have tumours in both my breasts and my left lymph nodes.  Why would I not want someone to get rid of them?  Yes, the cancer might raise its ugly head somewhere else, but right now, shouldn't I get rid of the obvious culprits?  Ditto for the tumours in my lungs.

My oncologist was devastated when we discovered my mets, and I think we were both in a state of shock.  I agonised about what to do, because I didn't want to put myself through the pain and inconvenience of surgery and radiation if it was all going to be for naught.  But the more I thought about it, the more I realized that I can't just roll over.  I have to fight.  It's in my nature not to give up.  So this CT scan is going to be crucial.  I am trying to keep calm and not obsess about it, but I must admit, I can't help but think about it from time to time, and I even dreamed about it.  I am eating lots of fruit and veggies to boost my antioxidants!

Re: Metastasized TNBC - what was your treatment option?

Posted by Lyne on Dec 1, 2019 8:34 pm

Hello Treepeo‍ 

Unfortunately, I have already gone through chemo, mastectomy and radiation.  The mets are not so much the issue as the malignant pleural effusion.  
I wish you the best of  luck with your treatment and hope that they can fo more than msintain. 😁 There is always hope! For now, mine is to spend quality time with my family and friends and consider any option that may help with this. ❤ 

Re: Metastasized TNBC - what was your treatment option?

Posted by Lyne on Dec 20, 2019 11:22 am

So, it has been a little while, but here I am... still kicking... 😁
I started the second course of chemo (capecitabine), with still little side effects, some nausea but otherwise all good.
I am on a low dose 1200mg and they have started with some narcotics to try and build my tolerance should I need pain medication in the future.
My nurse laughs at me and my "baby" doses, but I don't do well with medication, so baby steps are appropriate.
I had a CT-scan done so MO could have a base and mets are in lungs, pleura and lymph nodes.  Not unexpected as lymph nodes were involved two years ago also, but still.
The fluid being drained has finally subsided and I am hoping that the drain will be removed in the new year.  Clinics are closed for the most part for the holiday season. 
Breath is still shallow, but I am not coughing as much, and clonazepam is helping with my sleep (all .25mg of it LOL) 
I am trying to keep busy and doing things that help me in feeling normal as this is a very surreal time for all of us.  There are many tears, but also much laughter, people looking in must think we are crazy as the littlest things sets off huge reaction...  the iPad Christmas commercial for example...   
A long time ago, when my daughter used to dress her Barbies using kleenexes we had said we should invest in their stock, I so regret not doing it, we'd be rich now!  LOL 
The palliative care nurses are amazing, their knowledge and understanding is beyond anything I've experienced in the medical world.  Their support and understanding is seeing us through difficult moments, and their attention is incredible.  Not that I wish that anyone here need their services, but thought I'd share.  They do make a difference in my quality of life as they explain what I'm feeling, sometimes even before I mention it.  It's helpful.
I've started writing letters for my loved ones, it is sad, but very effective for me, as I can share my hopes and love for them.  Setting up all my affairs, making sure all is in order, having difficult conversations around my wishes and informing those who need to know, those with whom I may go away for little trips with, that I have a DNR in my wallet, with my health card, is helpful.  It is about my quality of life, and my decision.  I do not want anyone to question a decision they may need to make, these are my decisions.  No regrets. No guilt. 
Sorry, maybe too much information, but...   💗

Re: Metastasized TNBC - what was your treatment option?

Posted by Wendy Tea on Dec 20, 2019 11:37 am

Lyne‍ , good morning! Thank you for your poignant post. I am happy to hear how well you are managing, you are organized, thoughtful, practical, and best of all, you are taking care of your body, mind, and spirit. Writing letters at any point in life, journaling, or keeping a blog, may help explain things to others later. 
You seem to be at peace and I envy you. This is a difficult state to achieve and I am sure you are blessed.
I am glad you value every minute,  we should all do this. Yesterday has gone, tomorrow has not happened so live for today. 
You are in my thoughts.
Wendy Tea 
Healing takes time and opportunity. Wendy Tea

Re: Metastasized TNBC - what was your treatment option?

Posted by Lacey_adminCCS on Dec 20, 2019 12:47 pm


It is great to hear from you. Thank you for taking the time to update us. 

I'm so glad you are feeling well taken care of by your Palliative Care Nurses. It sounds like you are in great hands and have a team who is focused on your wishes and best quality of life. That warms my heart. It is beautiful the way you are taking care of things so others are clear on your wishes. You are so right these are your decisions to make. When my father was diagnosed with advanced cancer he let us know his wishes. When the time came it was so comforting to know that we were proceeding the way he wanted. That is a true gift you are giving to your loved ones. With all of that out of the way you can also focus on the best quality of life. 

Not too much information at all. Rather important information that you shared. Thank you for trusting us to share it.

Wishing you more opportunities (IPAD commercial) to get those tears out and even more laughter.

How are your kids doing?



Re: Metastasized TNBC - what was your treatment option?

Posted by Lyne on Dec 21, 2019 9:03 am

Lacey_adminCCS‍ , thank you for validating my comments, it means a lot to know that others who have had this experience feel the same.  I do want (need?) to make this as easy as I can for my loved ones.
My daughter is doing amazingly well, we have long talks and are able to laugh through the tears.  She finished her third semester in University with amazing grades, so I'm thinking that she is focusing her energy and thoughts on her studies, which is a good thing, as I told her that I'd like to attend her convocation, especially if she graduates with Honours, and on the President's roll …  LOL  no pressure!  My step-sons are more difficult to read, one is in Texas and one is self-employed with a new business, so the opportunities are limited, but I am hoping that with the Holidays around the corner, there may be more opportunities to talk.  It gets complicated, doesn't it?

Off to the ballet...  Nutcracker tonight in Toronto, I can't wait!  
Take care and thanks again for your comments, it means a lot.

Lyne 💗

Re: Metastasized TNBC - what was your treatment option?

Posted by Cynthia Mac on Dec 21, 2019 10:03 am

Thank you, Wendy Tea‍ - poignant was the word I was looking for!

Lyne‍ , thank you for sharing your story. You have reminded me of reading through my Mom’s journals of her last few days, trying to figure out just how badly she might have been feeling (she died when having an angiogram, and she’s only seemed sick for a few days - maybe a week.) There were no new insights in her writing, though.

By sharing your story, you could be helping others sort out thoughts about a similar stage of a cancer journey that may lie ahead for them.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Metastasized TNBC - what was your treatment option?

Posted by ashcon on Dec 23, 2019 9:00 am

Hi Lyne‍ and Treepeo‍ 
​​​​​​Let me thank you as well for sharing your update. TNBC is not so common, and those living with metastasized TNBC - and also being an active member on this site - is even less common. 
My TNBC was diagnosed at Stage 3 and I am in full remission right now, but I feel like I am waiting for the other shoe to drop. 
Don't get me wrong, I am living each day very fully - in fact I'm so busy I fall into bed each night in a happy, exhausted state. 

Just wanted to say "thank you" to both of you and I wish you continued joy and pride in all that you do, and in the legacies you will leave behind. 

I decided last month that in 2020, I will start creating my legacy gifts for my 2 daughters. I think I will also create something for my not-yet-existent grandchildren. It's just a matter of time before my daughters have kids. 

Final decisions? Lyne you said it so well when you said you don't want anyone to feel doubt or guilt about any decisions that need to be made. 
After we're gone and our children are asked about their mom, we want their faces and smiles to light up with warm memories, not turn away and downcast with haunting thoughts of guilt and sadness. 

ashcon (Ann) 
---- "Nothing ever becomes real till it is experienced." ----

Re: Metastasized TNBC - what was your treatment option?

Posted by Picasso’s mannequin on Dec 27, 2019 6:21 pm

I would ask about Leronirimab. I am asking for myself for TNBC, and that drug which has been used for HIV, and I understand is being fast tracked for compassionate use. It’s a new use.

don’t know if you want to hear about that.

i admire your thoughtfulness.