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agness · 01-22-2016, 01:52 PM

What a nightmare for you. It happened to my friend as well, they didn't mention the 1cm bone lesion last year, she was in a trial, the bone lesion spread while the others decreased. She wasn't told.

Every patient should get a copy of all their medical records and read through them. Don't trust your doc or your tumor board's interpretation. You want to know what is what.

Xeloda has been doing some amazing things for women on the Inspire.com forum so I think that isn't a bad step for you. It might just be your magic bullet. Think positive things.

Also, see about whether rads might be appropriate -- if it is still small and you can get to a proton center you might be able to nuke it and make it go away for good.

Also, you might have a mosaic of cancer cells -- some more HER2 and other more luminal/ER+ -- your body is pointed in that direction in its response. Own that even if you docs seem to not. They sometimes get fixated on one type of cancer type and that isn't the case at all and you are seeing that at work in your body. Use your body as the guide.

Ask questions and if I can help I will.

Hugs.

01-22-2016, 01:52 PM	#21
agness Senior Member Join Date: Aug 2014 Location: Seattle, WA Posts: 285	Re: Need input! What a nightmare for you. It happened to my friend as well, they didn't mention the 1cm bone lesion last year, she was in a trial, the bone lesion spread while the others decreased. She wasn't told. Every patient should get a copy of all their medical records and read through them. Don't trust your doc or your tumor board's interpretation. You want to know what is what. Xeloda has been doing some amazing things for women on the Inspire.com forum so I think that isn't a bad step for you. It might just be your magic bullet. Think positive things. Also, see about whether rads might be appropriate -- if it is still small and you can get to a proton center you might be able to nuke it and make it go away for good. Also, you might have a mosaic of cancer cells -- some more HER2 and other more luminal/ER+ -- your body is pointed in that direction in its response. Own that even if you docs seem to not. They sometimes get fixated on one type of cancer type and that isn't the case at all and you are seeing that at work in your body. Use your body as the guide. Ask questions and if I can help I will. Hugs. __________________ Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall. Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy. 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED. 10/27/15 atypical uptake in right cerebellum - inflammation? 12/1/15 Leptomeningeal dx. Starting IT Herceptin. 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly 3/2016 - stable scan 5/2016 stable scan 7/2016 pseudoprogression? 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT 11/2016 Cyberknife to temporal lobe, HBOT just prior 12/2016 - lesions starting to show shrinkage 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone. Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing. Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.