TNBC Secondary Diagnosis

Thanks for earlier advice to start a new thread. I was diagnosed two weeks ago with a tissue mass in the anterior mediastinum and chest wall, as well as some nodes and pericardial and pleural effusion. Organs bones etc appear clear. I am TN (or I was at primary but they don’t think this will have changed) so treatment for now is weekly taxol (aiming for 18). I’ve had 2 and side effects have so far been minimal. I am hoping to get back to work during this treatment and wondered how others on similar treatment are managing. I’ve not come across anyone with a similar clinical presentation although my oncologist suggested it was not that unusual.

Hi Carabel.  I had primary angiosarcoma in the breast dx last October, mx with removal of pectoral muscle and 33 rads finishing in March.  I found out in August I have 4-5 liver mets and a likely recurrence on my chest wall.  I know I don’t have breast cancer, but sarcomas are not hormone receptive and are aggressive, so the treatment options are fewer, rather like TNBC.

 

I have just had my 3rd weekly Taxol today and so far the side effects have been manageable with a some adjustments to routines etc.  I am starting from a good place healthwise as I have never felt unwell during treatment so far and when hopsital appointments don’t clash I’m doing my favourite classes at the gym and taking my dog for long walks :slight_smile:  I know someone esle with extensive angiosarcoma mets who is also on weekly taxol and after 6 cycles she is still working full time and currently on a walking holiday in Scotland!

 

I have had an allergic reaction to taxol 2 and 3 but it is managed by the staff and both infusions have been completed successfully in the end.  Will see my onc next week to see if she wants to change the meds.  Assuming I continue on taxol I will be scanned after two more cycles to see what effect the paclitaxel is having.  If it is reducing the tumours the plan is to keep me on it until it is no longer effective.

 

I know others will urge you to get the new tissue mass checked for hormone receptor status as it can change.

 

I hope taxol continues to be bearable and the constant hospital trips are do-able for you.  

 

Hugs, tat xx

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Hi Tat
Thank you for your reply although sorry you are in this position. I am heartened to hear that you are tolerating the taxol well as is the other lady you mentioned. I feel that everything is more tolerable if we can carry on with normal life as much as possible. Side effects from the taxol have been minimal but struggling a little with breathlessness from the tumour/fluid around the heart so hoping the chemo will improve that. I am normally a walker so finding that part difficult. I think they said they will scan me after 9 chemos which seems quite a long time to me…
Good luck with your treatment I hope it works for you for a very long time xxx

Ps I’ve been told hormone status very unlikely to change to positive but small chance HER2 could. They will consider testing at some point if they can get a biopsy easily and safely.

Hi Carabel.  I really hope the taxol helps with your breathlessness and you are able to return to ‘normal’ activity soon.  My gym classes and dog walks are an important part of keeping my mental health stable and I would find it really difficult if I could no longer do and enjoy them.  

 

My hair has started coming out in handfuls over the past couple of days, so watching and waiting to see what happens!  It does seem side effects vary enormously from person to person and some of the people receiving palliative taxol at my hospital have kept their hair…

 

It sounds like your onc is scanning you after 3 cycles (9 weekly infusions) of paclitaxel, same as mine.  I have been on a 3 month scan cycle since dx which is standard for sarcomas (with or without secondaries) because of their aggressiveness.  So my next scan in 2 months’ time will be as scheduled anyway.  

 

Keep posting to let us know how you are getting on with this regime.  

 

Big hug, Tat xx