HER2 Support Group Forums - View Single Post - her2 specialist recs? & did you change tx w/ 'slight' progression?

fireyfresia · 01-29-2016, 11:31 AM

tldr: 1st failed tx & could use some help… if you're willing to share & you have a favorite, HER2+ specializing med onc, would you please PM their name/hospital? (I travel a bit, so location is fairly open). THANK YOU!!!!
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I'm sure this is not too unique, but my 1st failed tx, so probably over-reacting & could use some help… why does it always feel like a sick-twisted-crap shoot? thank you for listening & helping if you can!!

great news first - awesome brain mri!!! near complete resolution of both lesions w/ no other anything showing up!
ug news - slow progression in abdominal l. nodes (previously had complete response in liver)

PET: "PRESUMED" metastatic lymph nodes: same SUV 5.0 & only mild enlargement from 2 months ago
MRI: "PROBABLE" lymph node metastases measuring 9mm correspond w/ PET & new "INDETERMINATE" 9mm hyper-enhancing liver lesion
PLAN: as it's slow-growing, watch & wait w/ MRI at 3 month intervals

so, if it's small, slow-growing, SUV 5.0, asymptomatic - "presumed," "probable"... does that 'qualify' as progression? who knew there were shades of progression w/ HER2+ disease?

guidelines advise switching to tdm1 upon progression. med onc says no switch'til growth accelerates -- even if it grows slightly each scan, no change.
no biopsy - as it's so slow-growing it most likely hasn't changed receptor status.

name of the game is stall... manage disease while preserving best QOL (aka palliative), I get that. if we can get 3+ more months out of herceptin/perjeta, isn't that better than switching now? conservative, but perhaps wise.

or, call it progression, switch to tdm1 & aim to get disease firmly controlled, asap? no promises it'll work, body'll tolerate it (generally is well-tolerated tho) & likely increase SEs. (have had brain mets, so no use worrying about spread to brain)

I can build strong cases for both options. am looking for 2nd opinion & will try for tumor board, if appropriate. anyone familiar w/ similar case? I realize there's no serious urgency, but I'd like to get informed asap.

if you're willing to share & you have a favorite, HER2+ specializing med onc, would you please PM their name/hospital? THANK YOU!!!!

ps -- anyone doing tdm1+perjeta (on or off trial) & where were you able to get it? thank you!!

01-29-2016, 11:31 AM	#1
fireyfresia Junior Member Join Date: Sep 2014 Posts: 4	her2 specialist recs? & did you change tx w/ 'slight' progression? tldr: 1st failed tx & could use some help… if you're willing to share & you have a favorite, HER2+ specializing med onc, would you please PM their name/hospital? (I travel a bit, so location is fairly open). THANK YOU!!!! ************************* I'm sure this is not too unique, but my 1st failed tx, so probably over-reacting & could use some help… why does it always feel like a sick-twisted-crap shoot? thank you for listening & helping if you can!! great news first - awesome brain mri!!! near complete resolution of both lesions w/ no other anything showing up! ug news - slow progression in abdominal l. nodes (previously had complete response in liver) PET: "PRESUMED" metastatic lymph nodes: same SUV 5.0 & only mild enlargement from 2 months ago MRI: "PROBABLE" lymph node metastases measuring 9mm correspond w/ PET & new "INDETERMINATE" 9mm hyper-enhancing liver lesion PLAN: as it's slow-growing, watch & wait w/ MRI at 3 month intervals so, if it's small, slow-growing, SUV 5.0, asymptomatic - "presumed," "probable"... does that 'qualify' as progression? who knew there were shades of progression w/ HER2+ disease? guidelines advise switching to tdm1 upon progression. med onc says no switch'til growth accelerates -- even if it grows slightly each scan, no change. no biopsy - as it's so slow-growing it most likely hasn't changed receptor status. name of the game is stall... manage disease while preserving best QOL (aka palliative), I get that. if we can get 3+ more months out of herceptin/perjeta, isn't that better than switching now? conservative, but perhaps wise. or, call it progression, switch to tdm1 & aim to get disease firmly controlled, asap? no promises it'll work, body'll tolerate it (generally is well-tolerated tho) & likely increase SEs. (have had brain mets, so no use worrying about spread to brain) I can build strong cases for both options. am looking for 2nd opinion & will try for tumor board, if appropriate. anyone familiar w/ similar case? I realize there's no serious urgency, but I'd like to get informed asap. if you're willing to share & you have a favorite, HER2+ specializing** med onc, would you please PM their name/hospital? THANK YOU!!!! ps -- anyone doing tdm1+perjeta (on or off trial) & where were you able to get it? thank you!!