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Old 10-23-2011, 11:46 AM   #21
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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~

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 Ė docs have never seen this before in BC
8/11 ĖStart 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!!!!!!!!!!"
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Old 10-24-2011, 01:57 AM   #22
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Location: Melbourne, Australia
Posts: 434
Re: PET Scan results

Hmm. See your point about anti climax. I'm hoping that not mentioning the liver means it is unremarkable which would be REALLY good news given what you've been through.
Keep celebrating and just take the next scan in your stride.
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6 cycles(FEC), Oct 40 rads, Tamoxifen
oopherectomy, Arimedex
liver mets largest 9cm
Taxol + Herc
Herc alone
Multiple bone mets,Zometa
Herc + Gemcitabine
Herceptin + trial drug
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 10-24-2011, 04:57 AM   #23
Pam P
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Join Date: Sep 2005
Location: MN
Posts: 731
Re: PET Scan results

Jessica - Great news on the pet results. About time for you to get this news! The current tx is doing good work. I agree with you though on the incomplete or casual report you got from the radiologist. I had that happen once and I was angry with the lack of detail. I asked the onc to have it redone and it was with much more specificity and comparison to the previous. Like you said, with the liver issues you've had, to not even mention the liver is good if unremarkable, but it would be wonderful to see an 'all clear' in writing. Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 10-24-2011, 09:48 AM   #24
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Location: Central Coast, CA
Posts: 3,207
Re: PET Scan results

Yeah, sometimes it seems like they just phone it in! I'm lucky I guess that the only person who gets more annoyed by that than me is my doctor, who has on more than one occasion made them go back and look at it again.

Of course, the radiologists all know this about her, so sometimes they go overboard "finding" things that are nothing, just because they want to have a nice comprehensive report! Like one time, they "found" a mole that I have had since I was a child...just to mess up a report that was essentially NED!

But I agree, it sounds like pretty good news overall - keep up the good work and celebrate inspite of the poopy would-be-doctor~!
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 10-24-2011, 01:37 PM   #25
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Posts: 562
Re: PET Scan results

Well, that sounds kind of like an anti-climax although it does sound more like good news than not. I don't understand the lack of focus on the liver.

I will definitely be thinking good thoughts as you have your brain examined. NED NED NED NED with a zillion exclamation points.

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

Iím beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now Iím 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 10-24-2011, 08:16 PM   #26
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Join Date: Oct 2010
Posts: 229
Re: PET Scan results

Best wishes, I am sure it will all be the best news! You deserve it!
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011

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Old 10-24-2011, 10:06 PM   #27
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,806
Re: PET Scan results


So happy for your good news and positive attitude. I love the 'Hallelujah Halaven + Herceptin!' statement.
(I'm a firm believer in the statement "positive attitude increases the release of endorphin which aids in healing and reduces pain...")

Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.

Advocacy is a passion .. not a pastime - Joe
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