HER2 Support Group Forums - View Single Post - Haven't been on this board for nearly 3 years

Mandamoo · 03-29-2013, 03:04 PM

This is really awful news and what cool breeze says is right however I feel the need to tell you about my friend who was diagnosed with lung recurrence at 30 - she was told she likely had 4 months to live - she is now 35 and has been NED for over 2 years. She has had two very significant recurrences - she is her2 pos, she has had lung surgery, laser and 2 types of chemo. She now does ocean swims, runs, cycles and is truly amazing. Her mets were so big they obstructed her airways - on both occasions. Some people defy the odds and we need to be as aware of those stories as we are the median.
I was diagnosed with lung mets when I was 38 - I've progressed on numerous treatments. I do all I can to be an active participant in my wellbeing from how I eat, researching treatment options, how I think, how my mental health is - I haven't given up. There are new and significant treatments for her2 disease more than other types of breast cancer - true none are 'the cure' for most of us yet but we can still lead fulfilling lives. I choose to live in hope that maybe something will work extremely well for me but in the meantime take each day as it comes and enjoy it for what it is. I have recently ocean swum myself despite my mets. Honestly struggling a little at the moment with respiratory infection and low platelets but people who don't know have no idea about my 'poor health' from meeting me.
I choose to still believe that there is hope for so many of us.

03-29-2013, 03:04 PM	#19
Mandamoo Senior Member Join Date: Jul 2011 Location: Melbourne, Australia Posts: 432	Re: Haven't been on this board for nearly 3 years This is really awful news and what cool breeze says is right however I feel the need to tell you about my friend who was diagnosed with lung recurrence at 30 - she was told she likely had 4 months to live - she is now 35 and has been NED for over 2 years. She has had two very significant recurrences - she is her2 pos, she has had lung surgery, laser and 2 types of chemo. She now does ocean swims, runs, cycles and is truly amazing. Her mets were so big they obstructed her airways - on both occasions. Some people defy the odds and we need to be as aware of those stories as we are the median. I was diagnosed with lung mets when I was 38 - I've progressed on numerous treatments. I do all I can to be an active participant in my wellbeing from how I eat, researching treatment options, how I think, how my mental health is - I haven't given up. There are new and significant treatments for her2 disease more than other types of breast cancer - true none are 'the cure' for most of us yet but we can still lead fulfilling lives. I choose to live in hope that maybe something will work extremely well for me but in the meantime take each day as it comes and enjoy it for what it is. I have recently ocean swum myself despite my mets. Honestly struggling a little at the moment with respiratory infection and low platelets but people who don't know have no idea about my 'poor health' from meeting me. I choose to still believe that there is hope for so many of us. __________________ Amanda xx 40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11 Wife to my wonderfully supportive husband of 17 years! 22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old (L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins. Fec3, Taxotere and herceptin2 - stopped due to secondary diagnosis June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy! September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing. January 2013 - herceptin, carboplatin and Perjeta (compassionate access) April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.