HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 10-11-2011, 10:47 AM   #121
Andrea Barnett Budin
Senior Member
 
Andrea Barnett Budin's Avatar
 
Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Exclamation Re: Calling all stage iv sisters

YES! I thoroughly believe my multitude of supplements keep me healthy and well. Immune boosters are imperative. Omega 3. C. B-12 for energy. Flaxseed Oil. Co-Enzyme Q10. D-3. E.Green Tea. Resveratrol. Selenium. Zinc.

I am dedicated to staying with my supplements (recommended by one of my oncs who specializes in this, plus meditation, guided imagery, and my firm belief in the mindbody connection!

I KNOW my body hears everything I think and say, everything I whisper, and it responds as I instruct. It seems to have no sense of humor, so I stay clear of, I wish I was dead, You're making me sick, blah, blah.

I troll my brain throughout the day for negativity seeds and consciously choose to reject them. They are poisonous! Whereas loving, compassionate, caring energy draws wellness to you and those around you.

That's my take. And I'm sticking with it!
__________________
Andi BB
'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...
Andrea Barnett Budin is offline   Reply With Quote
Old 10-11-2011, 04:51 PM   #122
Jeana
Member
 
Join Date: Dec 2010
Posts: 17
Re: Calling all stage iv sisters

Thank you Jackie for your post...My cancer has spread to my chest wall, and lung... I am back on chemo and have 3 more round's of it and then I will get another scan to see if it is doing any good...I pray that it does. I haven't given up!!! Thank's again, Jeana
Jeana is offline   Reply With Quote
Old 10-11-2011, 10:07 PM   #123
Pray
Senior Member
 
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
Re: Calling all stage iv sisters

Jeana,

I'm so sorry your cancer has spread! Please know you are in my prayers!

Colleen's sister Nancy
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
Pray is offline   Reply With Quote
Old 10-12-2011, 03:08 AM   #124
pibikay
Senior Member
 
pibikay's Avatar
 
Join Date: May 2010
Posts: 432
Re: Calling all stage iv sisters

Thanks Andi BB. I am dosing Hema with flaxseed added bread.Olive Oil,Canola Oil,Neurobion Forte(a vit B supplement) and graviola.She has calcium for her bones and a multi vitamin without folic acid (aggravates xeloda side efects).She is full of enrgy.All the best
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
pibikay is offline   Reply With Quote
Old 10-12-2011, 06:33 AM   #125
Andrea Barnett Budin
Senior Member
 
Andrea Barnett Budin's Avatar
 
Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Exclamation Calling all stage iv sisters

What I've learned since my initial bc dx, and the recurrence -- and what I believe to my core, is that what you want already exists. It blows my mind, but we are each empowered to do more than hope and pray (which are essential as well for sure!).

I saw a troubled young boy on Oprah once who'd been through great emotional upheaval in his young life and had a lot of wonderful therapy. This little boy said (what he'd learned through his trials) DON'T HOPE. DO!

Whatever we focus on all day comes to materialize in our lives. That's both the good news, and the bad. But YOU have the power to harness that.

Granted, it is darn near impossible to wrestle your thoughts, but it can be done. We can consciously choose what we want to be thinking. We have the power to do that! I AM STRONG, BRAVE AND DETERMINED is my mantra. Not that I think I am the first two, but they are precisely what I strive to be. I want to show my daughters how to face adversity, to reach for grace. To be able to find joy and even peace KNOWING what you desire is being magnetized to you by your loving, compassionate, generous, giving, appreciative, forgiving Truest Self. I see myself as a Soul, or a Spirit, with a mind and a body. And that is exactly how I see others...

Brave is not the absence of fear, it is doing what you have to do anyway. I listen to my Inner Voice, which I believe is my divine, God-given Spirit, or Soul. I trust it implicitly. It is the Essence of who I am. It KNOWS and guides me, protects me and loves me more than any one could possibly ever do. It is full of the energy of my sacred Source. It only wants what is best for me.

(Whereas the voice in my head is out for itself and maligns and messes with me, taunting and haunting me.)
I once thought I was the helpless receiver of it's jabs, but now I KNOW I can banish those thoughts. I won't allow them to invade my mind and poison my life.

HEALTHY AND WELL are the words I program into my head each day, instead, as a clear message. The body follows the commands it hears from you. That's its job. I don't want the voice in my head dictating my life. I want to take charge. And whenever I think about that, I realize I am choosing to connect with my Spirit, and let it lead the way. That is the True Me.

Keep making your Intention and Expectation vividly clear, to your body, and to the Universe! Both will respond in kind. Positivity begets positivity. And negativity calls more of the same.

I am sending loving, healing energy to each and every one of you...

Andi
__________________
Andi BB
'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...
Andrea Barnett Budin is offline   Reply With Quote
Old 10-14-2011, 10:56 PM   #126
SoCalGal
Senior Member
 
SoCalGal's Avatar
 
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
Re: Calling all stage iv sisters

Gotta love that Andi BB
:-)
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
SoCalGal is offline   Reply With Quote
Old 10-15-2011, 02:29 AM   #127
Mandamoo
Senior Member
 
Mandamoo's Avatar
 
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
Re: Calling all stage iv sisters

Wow - AndiBB - you are amazing! Thank you so much for your posts this week. A powerful mind and spirit in conjunction with powerful medicine and diet and supplements - now that sounds like a rounded treatment plan to me!
Thank you :-)
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
Mandamoo is offline   Reply With Quote
Old 10-29-2011, 06:06 AM   #128
kykeon22
Senior Member
 
Join Date: Aug 2011
Posts: 51
Re: Calling all stage iv sisters

thanks jackie for updating the list of stage VI survivors. It's very mood lifting to see so many long positive stories.

There is a misunderstanding about my mother bc though, you wrote that she is stage for since this august, but unfortunately she has been stage for since first diagnosis, that's is since february 2008. Vitamin H and Vitamin T have done a good job in figting the B(east) Cancer.

Thanks again for your huge work.

Kykeon
__________________
Son of Ha

She has been dignosed in February 2008 BC state IV, left breast multiple nodes size 5 cm, mets lungs and liver. Er+ Pr+ Her neu +++.
3/2008 - 10/2010 Herceptin + Aramidex NED
10/2010 recurrence lung met, pleural effusion, toracentesis
11/2010- Tyverb + Navalbine NED
08/2011 CA-15-3 = 90 scan
08/2011 Scan revealed reccurrence lung met, tiny metastasis on the pleura and pleural effusion.
4 pills tyverb, mytoxantrone once ever three weeks, and Aromasin.
Tykerb and taxol, sever allergic reaction
Tykerb taxotere
Herceptin, perjeta, gemcitabina
C- diff, bad diarrea
Halevan and tamoxifen, tm down from 1200 to 130

kykeon22 is offline   Reply With Quote
Old 10-29-2011, 09:06 AM   #129
Mary L
Senior Member
 
Mary L's Avatar
 
Join Date: Nov 2010
Location: PA
Posts: 297
Red face Re: Calling all stage iv sisters

Hi, My name is Mary L and I reached my 8 year cancerversarry Oct 17. I am a survivor of IBC stage IIIb. I was originally given a 28% chance of surviving 2 years and I am still here because of Herceptin and a wonderful onc. I was on Herceptin for over 4 years. I truly believe that you have to really want to survive and think positively during and after your treatment. I am so happy to be alive and watch my grandchildren grow up.

Just recently I was diag. with osteoporis and I will start taking Fosomax on Monday. I was diag. with some compression fractures and have been having back pain but this is just a bump in the road and I will be fine I wish all of you the very best. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
Mary L is offline   Reply With Quote
Old 10-29-2011, 11:19 AM   #130
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Calling all stage iv sisters

Mary L -
Was wondering about you recently. Thanks for peeking in and posting that all is well on the cancer front.
Hope your Muga scan will show improved ejection fraction by now.

Have you thought of getting Zometa instead of taking Fosamax every week?
__________________
"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.
StephN is offline   Reply With Quote
Old 10-29-2011, 07:40 PM   #131
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

Current stats:

Total 85 members* and 377 * years 1 months as of Oct 29, 2011
@ - members gleaned from other threads

*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads


[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. [60 members* and 284* years as of July 9, 2011.]

I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (NED 10 years) and AndiBB (NED 12 years), to name just a couple.

And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."


Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 3 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 5 months and counting
AndiBB ______________Er-Pr-Her2+ (1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ________ 16 years 2 months and counting (NED since 1999)
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 10 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 6 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 9 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 5 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 4 yrs and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs 2 months and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 4 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 1 month and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 1 month and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 6 yrs months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 5 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 6 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 8 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 7 yrs months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1year and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 4 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 5 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 8 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 9 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 8 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 3 months and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 2 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 6 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 2 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________ 8 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _________ 6 months and counting
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________ 8 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 9 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 6 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 9 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 11 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 4 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs 1 month and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 8 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________ 8 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 9 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 5 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 9 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ____________________________ 3 years 8 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 3 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 9 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 4 yrs months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 4 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 3 months and counting
Mary L_______________________(Oct 2003 IBC IIIB) July 2004 Skin___________________________7 yrs 3 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 10 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 2 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 5 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 8 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 5 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs 1 month and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 4 yrs and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year 1 month and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 yr 8 month and counting (NED)
Phil (‘s wife) ___________________________________________2006 _________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 7 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 8 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 11 months and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ____________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs 1 month and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs10 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 7 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 9 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs 1 month and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 7 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 2 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 10 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 9 months and counting
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 7 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 7 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 4 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 3 months and counting (NED)
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
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
Vertigo
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.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 11-22-2011 at 03:42 PM..
Jackie07 is offline   Reply With Quote
Old 10-30-2011, 04:38 PM   #132
fullofbeans
Senior Member
 
Join Date: Jan 2007
Location: UK
Posts: 617
Re: Calling all stage iv sisters

Dx stage 4 in Aug 2006 with 6 tumours (to 3.5cm in teh liver).

It's a rocking boat but I am still afloat.

Wow I have just noticed the compilations above, well done!
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama

Last edited by fullofbeans; 10-30-2011 at 04:42 PM..
fullofbeans is offline   Reply With Quote
Old 10-30-2011, 10:18 PM   #133
dawny
Senior Member
 
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Smile Re: Calling all stage iv sisters

Thank you so much everyone, for this thread, there are some fantastic milestones, it gives us newbies some hope

Dawn
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
dawny is offline   Reply With Quote
Old 11-14-2011, 01:37 PM   #134
ricky
Junior Member
 
Join Date: Nov 2011
Posts: 3
Re: Calling all stage iv sisters

My wife, first diagnosed stage 4 with liver met 5 and 1/2 years ago, has been disease free for the last 3 plus years. She's getting yet another pet scan as I write. I'd like to hear from other survivors.
Rick
ricky is offline   Reply With Quote
Old 11-14-2011, 02:59 PM   #135
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Calling all stage iv sisters

Rick
That is wonderful news! I am stable, having been diagnosed in July 2010 at Stage 4 with liver mets. What protocols has your wife been on? Wishing your family much continued success.
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
KDR is offline   Reply With Quote
Old 11-14-2011, 05:04 PM   #136
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

Below is the information about a research project involving stage IV survivors that was posted in another thread:

http://her2support.org/vbulletin/showthread.php?t=52136&referrerid=2556
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
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
Vertigo
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.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 11-14-2011, 08:50 PM   #137
Jean
Senior Member
 
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
Re: Calling all stage iv sisters

Jackie,
You are doll to keep the totals updated.
Thank you.

It certainly does have strong meaning for new members ( older) to see this list.
God Bless All,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
Jean is offline   Reply With Quote
Old 11-22-2011, 04:11 PM   #138
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

"Happy Thanksgiving!"

Current stats:
Total 87 members* and 383 * years 1 months as of Nov 22, 2011

*Including the founder of this group, Christine ((1990) 1999 Chest, Brain NED 2001~), those who have posted on this thread, and @members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 3 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 5 months and counting
AndiBB ______________Er-Pr-Her2+ (1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ________ 16 years 2 months and counting (NED since 1999)
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 10 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 6 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 9 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 5 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 4 yrs and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs 2 months and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 4 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 1 month and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 1 month and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 6 yrs months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 5 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 6 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 8 months and counting
Dawny _____________________Er- Pr- Her2+ May 27 2011 Lung, nodes chest and neck Abraxane weekly 16 weeks, Herceptin every third week (NED Sept 26 -)
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 7 yrs months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1year and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 4 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 5 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 8 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 9 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 8 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 3 months and counting
Fullofbeans _________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 2 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 6 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 2 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________ 8 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _________ 6 months and counting
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________ 8 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 9 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 6 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 9 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 11 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 4 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs 1 month and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 8 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________ 8 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 9 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 5 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 9 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ____________________________ 3 years 8 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 3 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 9 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 4 yrs months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 4 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 3 months and counting
Mary L_______________________(Oct 2003 IBC IIIB) July 2004 Skin___________________________7 yrs 3 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 10 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 2 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 5 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 8 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 5 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs 1 month and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 4 yrs and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year 1 month and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 yr 8 month and counting (NED)
Phil (‘s wife) ___________________________________________2006 _________________________5 years and counting
pibikay ('s wife Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ______________ 7 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 8 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ______________________________ 5 1/2 years and counting (3 + years NED)
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 11 months and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ____________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs 1 month and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs10 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 7 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 9 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs 1 month and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 7 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 2 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 10 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 9 months and counting
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 7 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 7 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 4 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 3 months and counting (NED)
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
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
Vertigo
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.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 11-23-2011 at 03:22 PM..
Jackie07 is offline   Reply With Quote
Old 11-22-2011, 04:23 PM   #139
CoolBreeze
Senior Member
 
CoolBreeze's Avatar
 
Join Date: Dec 2009
Posts: 562
Re: Calling all stage iv sisters

Thanks Jackie and Happy Thanksgiving to all.

I intend to keep that "and counting" next to my name for a long, long, long time.
__________________
http://butdoctorihatepink.com

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.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 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.
CoolBreeze is offline   Reply With Quote
Old 11-22-2011, 07:29 PM   #140
hraby73
Junior Member
 
Join Date: Jun 2011
Posts: 4
Re: Calling all stage iv sisters

I am so encouraged by this list! After 8 cycles of 3-weekly Taxol and weekly Herceptin, my CT today showed no measurable tumors! I'll be trading the Taxol for Tamoxifen next week, and can only hope to remain a part of this list for many years to come. Thank you to everyone for sharing their stories- it really does make a difference.
__________________
Holly
Initial dx 4/1/11 at age 37
stage IV, mets to liver, lungs
ER+, PR+, her2+
4/18/11 start Taxol, Herceptin
6/6/11 CT shows 50% reduction
11/22/11 CT shows no measurable tumors
11/29/11 trade Taxol for Tamoxifen
hraby73 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 04:04 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter