HER2 Support Group Forums - 11 years ago

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)

- her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)

- - 11 years ago - May 17, 2002 (https://her2support.org/vbulletin/showthread.php?t=58131)

11 years ago - May 17, 2002

Hi friends~
Today marks 11 years since I heard the words, "It is cancer." And since that moment, my world has been profoundly changed. I know how well you all know and understand.
33 yo, Stage IV with liver mets at primary diagnosis. After failing my first treatment combo, I don't think anyone would have thought we'd see this day...Eleven years later.
I can't say that it's gotten any easier over the years - chemo certainly isn't any easier, nor is losing my hair, now for the 5th time.
I guess I've just gotten "better" at living with this disease - the breath taking highs & the heart breaking lows, the scanxiety, mourning the life that I thought I would have - husband, kids, etc - sadness that I will likely say goodbye to my family prematurely.
BUT, this journey hasn't been without its blessings, many, many blessings. And lots of laughs, making joyful memories and actually enjoying my life in spite of the challenges. Most significantly, I can say that I like the person that I've grown into - a more faithful, compassionate, empathetic person. One that I would not have had the opportunity to become had I never been faced with this adversity and met amazing, inspirational guides and friends, like all of YOU.
I will keep fighting, kicking and swinging, waiting for more treatment options to be approved and praying that a cure comes or this disease just stops and NED stays forever.
Thank you for allowing me to lean on you when staying strong was too hard. I hope I am the friend, guide, support, shoulder and ear to all of you that you have been to me all these years.
Here's to 11 x 11 more~

Keeping the Faith,

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!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and Echocardiogram on 11/1 to keep an eye on node.
11/1/12 –echo shows normal cardiac function  & node non-threating,
but experiencing symptoms of Superior Vena Cava Syndrome (obstruction/compression)
12/3 - hold cytoxan & methotrexate bc counts too low.
12/13-moved up PET scan due to increased SVC symptoms
12/14 –No more NED node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…
Radiation to chest node recommended, change of systemic treatment pending
12/20/12 – 1/10/13 -14 rounds of rads to chest for mass causingSVCS
1/17/2013 – Started Pertuzumab, Herceptin, Taxotere
1/26-1/30/2013 – Surprise hospital stay for severe dehydration, dangerously low counts & blood born staph.
3/2013 – PET/CT shows almost complete resolution of chest mass & SVCS resolved. Still NED in HEAD!
Continue with PHT, but very hard on me.
Chronically anemic, requiring transfusions more frequently
Completed 5 cycles of PHT, now scan time 5/23.