HER2 Support Group Forums - View Single Post - Treating/monitoring central nervous system mets

agness · 10-01-2015, 09:29 AM

Hi Paul,

Here Im looking for what standard monitoring looks like, to help brain mets patients establish their own standard of care.

I have read of folks getting whole brain MRIs every 6 weeks or 3 months -- quite a span. (I also read that MRIs are only 70% effective for diagnosing brain mets spread)

I have read that 1 lumbar puncture is 45% accurate, three are 90% accurate, six are 95%, and 12-16 are pretty definitive for leptomeningeal spread. But how frequently are they done? I tried once a week and ended up with a spinal fluid leak it seems, plus a sore back and headache.

Do folks try Kadcyla or TDMI first? Is it ever evaluated with a lumbar puncture for blood-brain barrier penetration? Do you have to go down the systemic therapy path and show disease progression before you are able to try something different?

Do folks get their tumors genetically tested sometimes? Always? Does it factor in to treatment decisions made by the team?

Inquiring minds want to know

10-01-2015, 09:29 AM	#4
agness Senior Member Join Date: Aug 2014 Location: Seattle, WA Posts: 285	Re: Treating/monitoring central nervous system mets Hi Paul, Here Im looking for what standard monitoring looks like, to help brain mets patients establish their own standard of care. I have read of folks getting whole brain MRIs every 6 weeks or 3 months -- quite a span. (I also read that MRIs are only 70% effective for diagnosing brain mets spread) I have read that 1 lumbar puncture is 45% accurate, three are 90% accurate, six are 95%, and 12-16 are pretty definitive for leptomeningeal spread. But how frequently are they done? I tried once a week and ended up with a spinal fluid leak it seems, plus a sore back and headache. Do folks try Kadcyla or TDMI first? Is it ever evaluated with a lumbar puncture for blood-brain barrier penetration? Do you have to go down the systemic therapy path and show disease progression before you are able to try something different? Do folks get their tumors genetically tested sometimes? Always? Does it factor in to treatment decisions made by the team? Inquiring minds want to know __________________ 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.