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jml · 10-23-2011, 11:46 AM

Thank you everyone for celebrating with me!
Such a relief to get good scan news, after so many scary disappontments in the recent past few months!

So the visit with my Onc was somewhat anti-climactic

The NP that sent the email was out of the clinic for that day, so I didn't feel like I got to celebrate with as much enthusiasm.
Since it's that time of year when all the MD students, residents, fellows and those types do clinic visits with the MD's, they're usually the first to come into the room before my onc, and the guy that came into the room personifies my least favorite type of doc. And seemed offended when my sister asked when my doc would be in.
This guy read the overview of my treatment history, picked a few details to ask me about, but really doesn't know me or my history. And maybe because I feel like everyone at my cancer center treats me with such warmth & familiarity - after 9 yrs I know lots of folks there - I've come to anticipate that type of treatment.
To add insult to injury the PET report was pretty ambiguous. I think the radiologist that read/dictated it must have had low blood sugar & just wanted to go to lunch, bc he just seemed to blow through the dictation in one long run on sentence & didn't make any direct correlations to the findings of the previous report from Aug, but did pick some random new findings that hadn't previously been reported, like something about my adrenals & new supraclav nodes. And he said "due to technical difficulties" they didn't have any SUV values! UGH!
AND he didn't say anything about my liver- that would by my liver that has been one of our primary focuses over the years, that's been resected, that's been chemo-embo'd, that's been RFA'd...NOTHING. So annoying.
Even my Onc said "Yeah, this is kind of a weird report."

My frustration is that I don't have a really good sense of where my disease is right now, so we're having another Rad read/dictate a new report with some more precise comparisons.

Overall, it IS good news. I think when looking & comparing the scans, it's clear to see there is much, much less lighting up on this scan, but it just doesn't translate well in the report.
I have gone back and re-read the report, and it seems that where there had been a lot of stuff going on in my lungs and abdominal nodes last August, the disease has now receeded to just a few small nodes, like the supraclav, etc.
So, I'm still happy.

But then the NP just emailed me and said that it's time for another brain MRI since it's been a while

So now it's time for MRIanxiety. Boo.
Keeping fingers crossed and hoping that Novalis last year is still holding fast & clean.

Ultimately, anything that isn't bad is GOOD.
Hallelujah Halaven + Herceptin!

Keepin the Faith~

Jessica
Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
ISIS 2504 + Herceptin - 6 mos, partial response
Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
05/09 - Tykerb + Xeloda - partial response x 5 mos
10/09 - Xeloda + Herceptin - no response, disease progresses
2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
8/11 –Start new combo Halaven+Herceptin
10/14/2011 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/2011 - Scanxiety time -1st scans since starting this regimen
10/20/2011 - "IT LOOKS REALLY GOOD!!!!!!!!!!"

10-23-2011, 11:46 AM	#21
jml Senior Member Join Date: Dec 2006 Posts: 415	MED, pleased to meet you, again! Re: PET Scan results Thank you everyone for celebrating with me! Such a relief to get good scan news, after so many scary disappontments in the recent past few months! So the visit with my Onc was somewhat anti-climactic The NP that sent the email was out of the clinic for that day, so I didn't feel like I got to celebrate with as much enthusiasm. Since it's that time of year when all the MD students, residents, fellows and those types do clinic visits with the MD's, they're usually the first to come into the room before my onc, and the guy that came into the room personifies my least favorite type of doc. And seemed offended when my sister asked when my doc would be in. This guy read the overview of my treatment history, picked a few details to ask me about, but really doesn't know me or my history. And maybe because I feel like everyone at my cancer center treats me with such warmth & familiarity - after 9 yrs I know lots of folks there - I've come to anticipate that type of treatment. To add insult to injury the PET report was pretty ambiguous. I think the radiologist that read/dictated it must have had low blood sugar & just wanted to go to lunch, bc he just seemed to blow through the dictation in one long run on sentence & didn't make any direct correlations to the findings of the previous report from Aug, but did pick some random new findings that hadn't previously been reported, like something about my adrenals & new supraclav nodes. And he said "due to technical difficulties" they didn't have any SUV values! UGH! AND he didn't say anything about my liver- that would by my liver that has been one of our primary focuses over the years, that's been resected, that's been chemo-embo'd, that's been RFA'd...NOTHING. So annoying. Even my Onc said "Yeah, this is kind of a weird report." My frustration is that I don't have a really good sense of where my disease is right now, so we're having another Rad read/dictate a new report with some more precise comparisons. Overall, it IS good news. I think when looking & comparing the scans, it's clear to see there is much, much less lighting up on this scan, but it just doesn't translate well in the report. I have gone back and re-read the report, and it seems that where there had been a lot of stuff going on in my lungs and abdominal nodes last August, the disease has now receeded to just a few small nodes, like the supraclav, etc. So, I'm still happy. But then the NP just emailed me and said that it's time for another brain MRI since it's been a while So now it's time for MRIanxiety. Boo. Keeping fingers crossed and hoping that Novalis last year is still holding fast & clean. Ultimately, anything that isn't bad is GOOD. Hallelujah Halaven + Herceptin! Keepin the Faith~ Jessica Dx-5/17/02 - 33 yo; Stage IV L IDC w/single liver met Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets ISIS 2504 + Herceptin - 6 mos, partial response Taxol + Herceptin x 13 weeks to NED! NED for 1 year 9/04 - Single liver lesion recurrence Taxol + Herceptin - on/off to beat back lesion 12/05 - R Hepatectomy; Liver NED until 2009 3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy. 12/06 - L mastectomy + reconstruction through 8/07 10/07 - Recurrence - supraclav nodes Gemzar + Herceptin - on/off controlling nodes thru 9/08 - 7wks rads to supraclav nodes 10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents Back on Gemzar + Herceptin, but no longer responding. 05/09 - Tykerb + Xeloda - partial response x 5 mos 10/09 - Xeloda + Herceptin - no response, disease progresses 2/10- Ixempra + Herceptin - partial response x 12 wks. Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study. 6/10 - Novalis to treat brain met - SUCCESSFUL! 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion. 8/10 - Screened & Started TDM1 EAP Immediate response, disease in belly responds dramatically. 2/11- questionable progression of lung nodules Discontinue TDM1 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated. 7/11-Discontinue PI3Kinase + Herceptin study; Disease progression - 2 small lesions in colon – docs have never seen this before in BC 8/11 –Start new combo Halaven+Herceptin 10/14/2011 -Completed 3 cycles (9 wks)Halaven+Herceptin... 10/18/2011 - Scanxiety time -1st scans since starting this regimen 10/20/2011 - "IT LOOKS REALLY GOOD!!!!!!!!!!"