HER2 Support Group Forums - View Single Post - Lucky streak didn't extend to me :-(

Mandamoo · 07-12-2012, 03:02 PM

Thanks everyone.
I had my PET yesterday and while I don't have the full report I spoke with one of the radiologists last night (very good friend of mine). The lungs did light up and possibly a very small chest node.(5mm) comparison to my CT has not been done yet. Everywhere else is completely clear. He believes 4-5 are biopsy able though it will again be tough. None are close to the lung wall or get table via bronchoscope.
So, I am waiting today to hear from my oncologist snd expect I will attempt a needle biopsy again next week. I am very keen to get tissue as these lung mets have never responded in a way that anyone expected. I hope to God that they are not triple negative.

Thanks for all the input. I am thinking of discussing adding herceptin back in - I will need to fund either the tykerb or herceptin (tykerb will cost less but still more than $200 a day) as in Australia the government subsidies drugs not private insurance and this combination is not funded and given withdrawal of the FDA quest for this combo by GSK - unlikely to be for some time.

I also don't think I will qualify for the theresa trial as none of the tumors are 2cm.

Istill feel really good so I am going with that and trying to maintain the faith.

07-12-2012, 03:02 PM	#22
Mandamoo Senior Member Join Date: Jul 2011 Location: Melbourne, Australia Posts: 432	Re: Lucky streak didn't extend to me :-( Thanks everyone. I had my PET yesterday and while I don't have the full report I spoke with one of the radiologists last night (very good friend of mine). The lungs did light up and possibly a very small chest node.(5mm) comparison to my CT has not been done yet. Everywhere else is completely clear. He believes 4-5 are biopsy able though it will again be tough. None are close to the lung wall or get table via bronchoscope. So, I am waiting today to hear from my oncologist snd expect I will attempt a needle biopsy again next week. I am very keen to get tissue as these lung mets have never responded in a way that anyone expected. I hope to God that they are not triple negative. Thanks for all the input. I am thinking of discussing adding herceptin back in - I will need to fund either the tykerb or herceptin (tykerb will cost less but still more than $200 a day) as in Australia the government subsidies drugs not private insurance and this combination is not funded and given withdrawal of the FDA quest for this combo by GSK - unlikely to be for some time. I also don't think I will qualify for the theresa trial as none of the tumors are 2cm. Istill feel really good so I am going with that and trying to maintain the faith. __________________ 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.