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Re: Harrowing week and some guidance
I had lots of issues with white cells on Navelbine - I had a dose reduction and was able to maintain my neutrophils between 1.5 and 1.8 without neulasta. I also used accupuncture.
Re: Perjeta - I am accessing it through Roche (genentech) via an international compassionate access scheme - it may be worth applying - that way you know the drug will be transported properly and you won't have to pay. I am not sure it is still running now that there is both US and European approval. I am unsure of the impact on my disease yet as we have yet to scan and my tumor markers still seem to me climbing a little but have never been reliable for me. It does cause diarrhoea for me though which I am now managing but was difficult at first.
I am not sure why Hema feels unable to walk - maybe she felt very faint while her counts were low. If she can start mobilising again I am sure it would help her enormously.
Much Love
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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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