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Triple Negative Secondary Breast Cancer

9 REPLIES 9
Moijan
Member

Re: Triple Negative Secondary Breast Cancer

Hi Lisa,
How's it all going? Did you start Cape?
Let us know how you are Xx

M
Lisac1
Member

Re: Triple Negative Secondary Breast Cancer

Sorry meant to say I'm Lisa aged 41 xx
Lisac1
Member

Re: Triple Negative Secondary Breast Cancer

Hi jo, my name is Lisa I was diagnosed with secondaries to my lungs and liver only 4 weeks ago I started chemo regime EC yesterday haven't yet discussed any further treatment till we monitor the response to chemo. I'm still in that can't believe this is happening phase and finding it very difficult to function at the moment. My next big hurdle now the hair falling out again in the next two weeks. Xx
Liz_nz
Member

Re: Triple Negative Secondary Breast Cancer

I don't have any advice or feedback to offer, just sending you a big hug X
Islay100
Member

Re: Triple Negative Secondary Breast Cancer

Hi Ladies,
 
I am new to this site with a recent diagnosis of more secondaries. I was diagnosed with Primary TNBC in 2014.
 
Following my primary diagnosis in September 2014 I had chemo, mastectomy and reconstruction and radiotherapy.  
 
Regional recurrence/ secondary in Sternum September 2015. Removal of Sternum October 2015. Recurrence in the lung October 2016. Upper Lobectomy March 2017 and now they have found another nodule in my right lung two weeks ago. This time I wont be offered surgery and I am still recovering from the operation.
May start chemo next week (Capecitabine) with the option of going on the Metric Trial. Has anyone else had any experience of trials? 
 
Many Thanks
Moijan
Member

Re: Triple Negative Secondary Breast Cancer

Hi Triple neg ladies,
Just wanted to say, that although I'm blessed with not being triple neg, you are often in my thoughts. Xx

Although you are the experts in this area as you deal with it day in day out, .. logic tells me that they will suddenly discover either a missing substance which will be helpful or some mutation which happens and try to target that..... keep travelling hopefully...

are there any major world trials currently looking at tnbc? The other thing which hits me Right on the nose is, your tbbc cells....... are they, too, deoendanI on sugar? My guess is that they too, have 29/39 sugar receptors on the cell walls like our + cells
If so, then try to cut down.... I struggle with that, it's tough, I knowx

Love and hugs

Moijan💚💚💚
Marnster
Member

Re: Triple Negative Secondary Breast Cancer

Hi Han58

 

Sorry for the delay in responding. I haven't been into the private group board for a while. I had paclitaxel weekly for 12 weeks in late 2015 as part of my neoadjuvant chemotherapy for my primary diagnosis. Following treatment, I then had surgery and tumour and lymph nodes removed. My pathology results showed the cancer was still pretty active when they took it out, but I have heard of others with TNBC who had a complete pathologic response and the tumour had completely disappeared by the time they had surgery. Again, this was for a primary diagnosis.

 

I got my secondary diagnosis in October 2016 and as I'd already had paclitaxel, this wasn't an option for me. I did five rounds of Eribulin, but my tumours kept growing. Last week I started on a combination of carboplatin and gemcitabine. We'll try this for three months and see if it responds.

 

Let us know how you are going.

Han58
Member

Re: Triple Negative Secondary Breast Cancer

Hello all!!!! I am quite new to this . I have tnbc in lymph nodes under arm breast bone neck & a few dots in lung that was too small for onc to show me on scan. I'm on paclitaxol weekly for 12 weeks if after 6 weeks it is working. Was just wondering if anyone else is having or has had this treatment for tnbc & how long they stayed on it?xx
Marnster
Member

Re: Triple Negative Secondary Breast Cancer

Hi Jo!

 

i too have secondaries with triple negative breast cancer. I'm 43 and in Australia. I was diagnosed with triple negative breast cancer in June 2015. I had AC, Taxol as neoadjuvant chemotherapy followed by a mastectomy and axilla clearance. It was only found in one lymph node. I then had radiation. 

 

My medical oncologist followed this up with six rounds of Capecitabine as a precautionary measure as my pathology results showed the cancer had not responded well to the chemo and was still quite active when it was cut out. I then had a CT scan to check how I had responded and was subsequently diagnosed with secondaries in my lungs in October 2016. 

 

I had three rounds of Eribulin and a follow up scan in January, which found the mets in my lung, mammary node and on my chest wall had continued to grow. I was in the middle of organising an interstate move back to be closer to family and friends so my doctor kept me on a couple more rounds of Eribulin until I could meet with a new oncologist in my home town. She was running an immunotherapy trial with Keytruda and I planned to get on this trial. 

 

However, last week as part of the screening for the trial, a scan showed I now have a brain met, which makes me ineligible for the trial. I'm meeting with a neurosurgeon next week to discuss surgical removal followed up by radiation. Then will look at going on some more chemo to continue treating the other mets that are continuing to grow elsewhere and springing up in new places. 

 

I like the the sound of you being 'no evidence of disease'. Am hoping to hear something like that this year once we work out the best way to treat this horrible thing. How do you get on with 25% of your lung gone? Has it affected what you can do? I have been pretty fortunate that I haven't really felt any symptoms and the ones I have don't interfere with my life. I've just recently developed a couple of patches of numbness on my legs that come and go, which appear to be related to the brain met. But they don't stop me doing anything. It's just a bit of a weird sensation!

 

Great to hear from another triple negative! Do stay in touch. 

enzobenzo
Member

Triple Negative Secondary Breast Cancer

Hello all

 

I'm Jo and am 39 years old (Ok feel like I'm at an AA meeting ha ha).  I was diagnosed primary in October 2014 and re-diagnosed with secondaries in September 2016.

 

My secondaries were in my left lung and I had 25% of the lung removed on my birthday last year.  

 

I'm currently as of the scan in January, no evidence of the disease however I have been told it will come back they just can't tell me when!

 

Are there any others out there that are triple neg secondaries and how long have you had it?  

 

I look forward to sharing more with the group as I come to terms with the diagnosis.

 

Many thanks and love to everyone

 

Jo

xx