HER2 Support Group Forums - View Single Post - NED...is that YOU??? Long time no see :) !!

jml · 06-28-2012, 10:27 AM

Oh what a thrill it is to share good news with you, my friends!

Just got back from my Brain MRI and it remains NED! Yay! NED in the HEAD

As for the body...yesterday I had a very brief chat with my Onc & she said "Everything looks pretty good," when I talked to, but I didn't have the full report.
The Rad Onc gave me the report before even giving me to good NED Head news!
And what a report it is! I haven't had a scan so clean since 2005. The the report identifies areas of disease from the previous scan in January- with disease mostly in lymph nodes in my chest and lungs, abdomen, pelvis, supraclav,lesions in colon- now categorized as "not apparent...not well appreciated."
The final impression states, "Marked interval reduction /resolution of multifocal regions of abnormal FDG uptake in chest, abdomen and pelvis in comparison to prior examination."
Oh HAPPY DAY

The only 2 issues are my spleen is "prominent" and the stent in my L kidney has migrated and needs to be re-placed. Neither of those issues are too problematic and really pale in comparison to fighting this monster of a disease.
I keep re-reading the report to make sure that I'm not missing some statement that identifies new or residual active disease,and that I'm not truly NED, but it's just not there!
I can't feel the fulll weight of this wonderful news, yet - still feels surreal, so I'm going to take a nap, let the news settle in my bones, then get up and CELEBRATE! First phone call was to my mom & woke her in Hawaii @4:30am.
Successful treatment for any one of us is a VICTORY for ALL of us!

Keeping the Faith! ALWAYS~

Jessica
Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) 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
4) 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.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 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!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR

6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!

06-28-2012, 10:27 AM	#1
jml Senior Member Join Date: Dec 2006 Posts: 415	NED...is that YOU??? Long time no see :) !! Oh what a thrill it is to share good news with you, my friends! Just got back from my Brain MRI and it remains NED! Yay! NED in the HEAD As for the body...yesterday I had a very brief chat with my Onc & she said "Everything looks pretty good," when I talked to, but I didn't have the full report. The Rad Onc gave me the report before even giving me to good NED Head news! And what a report it is! I haven't had a scan so clean since 2005. The the report identifies areas of disease from the previous scan in January- with disease mostly in lymph nodes in my chest and lungs, abdomen, pelvis, supraclav,lesions in colon- now categorized as "not apparent...not well appreciated." The final impression states, "Marked interval reduction /resolution of multifocal regions of abnormal FDG uptake in chest, abdomen and pelvis in comparison to prior examination." Oh HAPPY DAY The only 2 issues are my spleen is "prominent" and the stent in my L kidney has migrated and needs to be re-placed. Neither of those issues are too problematic and really pale in comparison to fighting this monster of a disease. I keep re-reading the report to make sure that I'm not missing some statement that identifies new or residual active disease,and that I'm not truly NED, but it's just not there! I can't feel the fulll weight of this wonderful news, yet - still feels surreal, so I'm going to take a nap, let the news settle in my bones, then get up and CELEBRATE! First phone call was to my mom & woke her in Hawaii @4:30am. Successful treatment for any one of us is a VICTORY for ALL of us! Keeping the Faith! ALWAYS~ Jessica Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met 1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets 2) ISIS 2504 + Herceptin - 6 mos, partial response 3) 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 4) 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. 5) 05/09 - Tykerb + Xeloda - partial response x 5 mos 6) 10/09 - Xeloda + Herceptin - no response, disease progresses 7) 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! 8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion. 9) 8/10 - Screened & Started TDM1 EAP Immediate response, disease in belly responds dramatically. 2/11- questionable progression of lung nodules Discontinue TDM1 10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated. 11) 7/11-Discontinue PI3Kinase + Herceptin study; Disease progression - 2 small lesions in colon – docs have never seen this before in BC 11) 8/11 –Start new combo Halaven+Herceptin 10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin... 10/18/11 - Scanxiety time -1st scans since starting this regimen Good interval response, continue on H+H! 10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease? Re-scan in 8 weeks. 1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion. R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up. 12)Herceptin+ metronomic Cytoxan + Methotrexate. …on a hope & a prayer. Only chemo I haven’t been on is Taxotere. Hurry up Pertuzumab & TDM1! Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more. 1/18/2012- 8 new spots in 8 weeks since last Brain MRI one 2cm spot in brain stem, one 2cm spot in R temporal lobe. No symptoms, THANK GOD! 1/25/12 – Start WBR x 15 rounds 2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US! 2/14/12 – FINISH 15 rounds WBR 6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break for 3rd week due to low counts. 6/15/12 – Yay! Resume chemoJ 6/25/12 – Chemo break again due to low counts L 6/28/12 – PET Scan & Brain MRI this week… NED IS BACK!!! NED in the HEAD, NED in the BODY!