Looking for others that have experienced Triple Negative BC

I havent been on here a long time my breast care team wouldnt allow me to come back on line because they thought It was upsetting me more.
Well having diagnosis in april 16, port was implanted in may, AC chemo started day after port was implanted. 3 months, the taxol for 3 months. 2nd & 3rd round of taxol I started having fits just after infusion started. A lot of mucking about with drugs (as im allergic to many drugs including antihistamines.) I took so much steroids I had roid rage. (Id rival a body builder) I was even given pills for sedation. My october 25th I finished my chemo. I went in for my double mastectomy with total lymph node removal on left side on the 19th december. A 4hr surgery turned into 7hrs due to complications. I was in icu for 2 days. Then I was transferred to HDU, on the 23rd December I was raced back into surgery after 3 blood transfusions. I developed a hematoma on left side. They had to drain 1.6lts of blood and debride all the dead skin. I went into the surgery being told that I may have an open wound with a vacuum dressing. They were excited they managed to close it up. If i had an open wound they said I would be there till February.
They let me go home on 29th dec with a home nursing package. My 23rd wedding anniversary was on 31st December. So I was int there for christmas, but my family came in to have it with me.
In march this year I started my 5 weeks of high intensity radiation. Now im finished.  I have lymphedema affecting me every day, ive got compression sleeve & glove. Im in constant pain, i see a psychiatrist now helping me to deal with my body changes, my depression and anxiety.  Today I had to have an ultrasound on my left side because I found 2 lumps. See DR on Wednesday to see what they are.........
Im lost, I dont know what to do with my new normal life......          

I did put a closed group on fb called: triple negative breast cancer, australian fighters. All welcome to join...       

Hi all good morning

@carroll the Triple negative group no longer exists. When the network changed platforms most groups didn't carry over. The best thing to do if you wish to connect with others who are triple neg is mention it in the title of your post and everyone will see it when they read the main forum posts. I am triple neg too. Just got my 6 year clearance after a recurrence so feel pretty good about that. 
Hugs. 
Paula

It took me a few years to bounce back to nearly me ....  :)

Diagnosed with tnbc in Sept 2014. Chemo then bilateral mastectomies in Jan 2015, more chemo and then radiotherapy.

Thank you so much ..  only taken 2 years

hi @carroll  How are you going ? I was diagnosed back in Sept 2012. 

here is a link to how to do things on the online forum.... 
https://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread

I hope you are going well. 
Alice aka SoldierCrab

Hi am Carrol new to this site not sure if l joined this group tnbc as post are only up to Sep 2016... do l have to open triple negative each time l come on line .. am really looking forward to chatting .. have finally learnt how to get on here kept forgetting my log in .. finally memory is so much better and yeahhhh logged on but know nothing of the site ,, joined while under going my chemo in June 2015 .. taken me this long to finally get on here and feel its time for me to talk with others , going through my journey ...

hi there I was diagnosed the tnbc may 2016 L breast mastectomy done instead of the optional lumpectomy and radiation (my choice) 8 lymph nodes taken and were all clear and all scans clear also. I finished chemo 7 weeks ago. I had 4 rounds of AC and 4 of taxol fortnightly for 16 weeks. I decided to remove the other boob also - having that done tomorrow actually - again my choice. Still have some residual mild numbness in my toes and finger tips and some mild joint pain in my fingers but otherwise I'm doing really well. So far so good, I take each day as it comes and am looking forward to going back to work in the new year. Had the genetic test done a few weeks ago still waiting for results have no family history but because I'm under 50 and had tnbc I got to have it done. Happy to chat to others who have gone through the same :)

I was diagnosed with triple negative metaplastic breast cancer in Sept 2013 (left breast) aged 49 following my GPs advice to get a baseline mammogram done before starting HRT. I had a significant number of positive lymph nodes but remained positive going into treatment. I had chemo from Oct 2013 to Mar 2014, followed by radiotherapy through to May 2014. Like GabbyG I picked up some better habits and had tremendous support from friends, family and the team running the Living Well After Breast Cancer research program.

On returning from a fantastic holiday in Tasmania in January 2016 I noticed a discomfort in my right shoulder. Nothing I did seemed to completely resolve it so after several months (too many?) I took myself to the GP and got an ultrasound and Xray. A few more investigations later and I had the news that I didn't want... the breast cancer had returned in my bones. My entire right scapula glowed red in the pictures from the PET scan! Smaller lesions were found in my spine, pelvis and rib.

On 21 September 2016 I started on cisplatin and gemzar (3 weeks on, 1 week off) with zometa once in the cycle. I can't say I am coping too well with the treatment, work is out of the question although others seem to manage it. My white cells are also struggling but my oncologist is keen to press forward and for me to take extra care with exposing myself to sources of infection. The positive is I only have 4 more sessions to go!!! I go back for more scans in January 2017 so see how effective the treatment has been. Being triple negative doesn't seem to leave many alternative treatments outside of chemo so I'm really not sure what my journey will be from January.

I would love to connect with others in a similar situation.  :)