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Old 05-08-2015, 09:25 PM   #21
StephN
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Re: When work really hits home

Irvinefriend, I know you work as hard as you can to bring forth a new treatment that shows so much promise. I appreciate your mighty effort and letting us know the pipeline is far from empty.

My reading of the posts is not that "the industry" is so horrible - there is a difference between phraseology and the diligent work of an entire industry.

I, too, had to swallow hard when I began treatment for stage IV mets and it was called "salvage." I thought I had a better chance than that! But that term used by my onc to someone on the phone brought me up short. I had to try hard to put the term out of my mind, and find ways to stay positive about my chances. I was pigeonholed in a place I did not want to be!

Terminology hits us differently depending on our perspective.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 05-09-2015, 04:43 AM   #22
Lien
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Re: When work really hits home

Hi Julie,

You are doing an immensely important job and working so hard to save lives, give us new options and we are noticing that! I know it must be hard to get comments about the language used in the industry, because you are not responsible for that. I get that. And it's not fair to blame you for something you cannot influence. Just keep doing the fantastic work you are doing now, and keep us informed. You bring us hope in a landscape that sometimes seems so barren. We keep hearing about drugs that might help us in the future, but none of us knows how long we have until our treatments stop working. Please don't leave this forum. We need people like you.

I too tend to think that we don't fail a therapy, it fails us. It didn't help us live longer, with better quality of life. But we cannot expect people to get that. Not unless they experienced it and felt how harsh those words felt. We did not fail, the drugs failed, or the cancer failed to respond. But you are in no way responsible for the use of that kind of language in the industry you work for. I do believe that all those people giving all their energy and years of their lives for cancer research only have the best intentions. Perhaps a couple of them are in it for the money, but hey, they could have gone into banking and that would not have helped us, would it?

Please stay, or come back when you feel the time is right for you.

Love

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 05-09-2015, 05:17 PM   #23
sassy
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Re: When work really hits home

Julie,

You are a valued member of our community and we in no way feel you are responsible for unfortunate medical terminology.

Words hit people in different ways, and our responses to unfortunate terms can come from deep seated feelings and difficult life experiences.

I hope our words to you express our respect and caring for you.
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dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 05-09-2015, 05:33 PM   #24
Andrea Barnett Budin
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Re: When work really hits home

Just want to make it clear that I thoroughly agree with every word that Sassy just wrote, Julie.

We all bemoan that phrase. I in no way what so ever, hold you responsible for such terminology.

We all love and support you, always.

Andi
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 05-09-2015, 06:09 PM   #25
forher
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Re: When work really hits home

I wanted to chime in and thank you for your dedication, Julie. I'm one that has enjoyed your posts. Hope you will come back when you feel up to it. My best to you.
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June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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