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Old 04-30-2013, 07:54 PM   #3
Mandamoo
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Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
Re: Can't do Gemzar...sigh...the only one that ever works

I'm sorry to hear this. Why can't you continue on Herceptin and Perjeta alone - they shouldn't affect your counts and may give them more of a chance to recover and also possibly keep you stable or better.
I had a cuppa with a fellow TDM1 trial friend the other day - we both got bumped off at the same time - me for progression and she for issues causing liver inflammation and now serious liver problems (this has been attributed to TDM1). She is receiving Perjeta and Herceptin alone and so far is stable so maybe it could be something for you?

I don't know why you are feeling so bad and i am so sad to hear that you are. You and I have had mets about the same time (I have lung mets - about 50+ spots some of which are now over 3cm and now also numerous mediastinal and other neck nodes) and I feel almost normal apart from my irregular, annoying cough. I can't imagine dying yet at all despite my continued progression.

I've done probably as many treatments as you and have already done TDM1 and the Bolero (affinity) trial. Tykerb and xeloda was good for me but not for long. One of my oncs here is enthusiastic about afatinib and neratinib. I am currently on abraxane (just started).

You've stated you don't believe in alternative therapies but I have employed many complementary therapies and believe this helps keep me actively living.

Are you on or have you considered anti-depressents too? Maybe that will help with the low feeling which totally sucks. I do know what it feels like to feel like you are up against a wall - a friend once said to me "but there is always a ladder" I hope that you find yours.
xxx
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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.
Fec*3, Taxotere and herceptin*2 - 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.
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