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!!!!
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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!!

Re: her2 specialist recs? & did you change tx w/ 'slight' progression?
 

I can't really address most of your Qs as I have not had confirmed progression though I did have a new lesion on my rib via Bone scan, it was inactive on PET. I did changed taxanes because I was feeling louse, not because of progression. Short story is: slight progression but sticking with the same general treatment. What I did want to respond to is that even though your tumor is slow growing (mine is too see low Ki67 in sig), your pathology CAN change, mine did (see now PR+ at 50% in my sig file). I think assuming the pathology hasn't changed could really limit your treatment, especially if you are having progression. Hope things go well for you, I'm sorry you are experiencing progression.

Re: her2 specialist recs? & did you change tx w/ 'slight' progression?
 

My two cents - I don't have anyone to recommend, that said, UCLA is very smart when it comes to HER2+. I have friends who see Dr John Glaspy and others who see Dr Sarah Hurvitz.
I would not wait around and watch. I've watched things where the suv slowly increases, but not the size. Slow grow means something's growing, so I personally would attack especially with liver involvement. To that end, a couple of thoughts; have you tried adding tykerb w/herceptin and maybe some xeloda?
Have you thought about adding a weekly chemo agent (navelbine) to the Herceptin/Perjeta mix? I have a her2+ friend who has successfully done this for a year, then on just targeted and then used it again to smack back mets.
If chemo is a deal breaker for you, then I would go to TDM1/kadcycla.
There is also a strong school of thought that suggests the whack-a-mole approach. RFA for the liver mets?
Have you done the usual dietary changes, plus supplements for high vitamin D levels, balancing omegas, adding tumeric, etc. etc?
Cuck Fancer!! Hoping you get some answers that are reassuring to you - cancer is such a mind game, and yes, scan reports are not ever full of committed language, it's part of the torture but really just part of diagnostic speak. Hang in there!