HonCode

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

Reply
 
Thread Tools Display Modes
Old 10-21-2014, 10:27 PM   #1
Gift
Senior Member
 
Gift's Avatar
 
Join Date: Jan 2011
Location: Bangkok, Thailand
Posts: 31
Stage IV Survivors out there?

I've been through 8 rounds of Taxotere + "Herceptin". Next is only "Herceptin" every 3 weeks until ..... (eternity, keeping my fingers crossed).

Would really like to know how many Survivors from Stage IV are out there and what is your treatment like. Please give me hope.

Gift
__________________
dx July 2010 with ER 80% PR - Her2 +++, 7 cm tumor
3 rounds AC (stop after round 3 since the tumor didn't shrink)
3 rounds Herceptin until tumor gets smaller to 4 cm
Lumpectomy on 12 Dec 2010
TCH x 4 (6 are planned but low WBC), 35 hits Radiation, and one year Herceptin
Jan 2014: met to bladder and then liver and lungs
Jan 2014: Operation to remove 3 cm. tumor from bladder
May 2014: started Taxotexe & Tratuzumap (either Herceptin or Herculis, being a part of Mylan research)
Oct 2014, 3: finished 8 cycles of Taxotere & Tratuzumap
Oct 2014, 24: only Tratuzumap every 3 weeks
Jul 2015: progress in bladder - operation and keep on Tratuzumap
Dec 2015: progress in bladder still & met to ovaries
Gift is offline   Reply With Quote
Old 10-22-2014, 04:21 PM   #2
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,040
Re: Stage IV Survivors out there?

Dear Gift -
I raise my hand to your question. It is now 15 years since my initial diagnosis and over 13 since staged up to IV. I have been OFF any treatment for nearly 5 years now.

You will find some others such as AndiBB who are like me and no longer have any evidence of disease.

You are a smart cookie and have been learning about this disease and how to fight it. Put that knowledge to use and use all the tricks in your bag against the cancer.
__________________
"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 half of 2017. Boring ...
StephN is offline   Reply With Quote
Old 10-22-2014, 05:46 PM   #3
Gift
Senior Member
 
Gift's Avatar
 
Join Date: Jan 2011
Location: Bangkok, Thailand
Posts: 31
Re: Stage IV Survivors out there?

Dear StephN,

Wow, you have been through and win, such an inspiring story.
btw can anyone with stage IV off the treatment, when could that be?

Sending big regards from Thailand
__________________
dx July 2010 with ER 80% PR - Her2 +++, 7 cm tumor
3 rounds AC (stop after round 3 since the tumor didn't shrink)
3 rounds Herceptin until tumor gets smaller to 4 cm
Lumpectomy on 12 Dec 2010
TCH x 4 (6 are planned but low WBC), 35 hits Radiation, and one year Herceptin
Jan 2014: met to bladder and then liver and lungs
Jan 2014: Operation to remove 3 cm. tumor from bladder
May 2014: started Taxotexe & Tratuzumap (either Herceptin or Herculis, being a part of Mylan research)
Oct 2014, 3: finished 8 cycles of Taxotere & Tratuzumap
Oct 2014, 24: only Tratuzumap every 3 weeks
Jul 2015: progress in bladder - operation and keep on Tratuzumap
Dec 2015: progress in bladder still & met to ovaries
Gift is offline   Reply With Quote
Old 10-22-2014, 07:42 PM   #4
annettchen
Senior Member
 
Join Date: Mar 2014
Posts: 94
Re: Stage IV Survivors out there?

Hello Gift,

I hope one day to get to where Steph already is... ;-) I only just got started on this journey, but am so far doing well (re-staging on Friday, so we'll see what that will bring).

In the meantime, since you asked about treatments: Like you, I also got 6 x Taxotere and Herceptin, but in addition to that also got Pertuzumab (Perjeta). Since I have bone mets, I also got Xgeva every four weeks.

Currently (since July) I'm on only Herceptin and Perjeta, and my oncologist would like to reduce the frequency of Xgeva - will discuss next week.

And yes, there are many long term survivors in this forum - mamacze comes to mind, as do Adriana Magnus and Bunty. I recently heard from a woman my age that has been on Herceptin only for 4 years - no progression! I also think that some long term survivors that are NED for a considerable time may not come to the forum any more, or very rarely - they are out there living their life!

Hang in there, one day this will be a manageable, even curable disease!
__________________
Annette
----------------------------------------
03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
annettchen is offline   Reply With Quote
Old 10-22-2014, 11:34 PM   #5
Pamelamary
Senior Member
 
Pamelamary's Avatar
 
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 418
Re: Stage IV Survivors out there?

Dear Gift,
i am almost 3 years post Stage IV diagnosis. After 6 rounds of taxotere, I am currently living well on Herceptin, Tamoxifen and Denosumab for the bones.However there are many others, like StephN and AndiBB, in whose footsteps I hope to follow!
Best wishes to you..... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
Pamelamary is offline   Reply With Quote
Old 10-23-2014, 10:36 PM   #6
Gift
Senior Member
 
Gift's Avatar
 
Join Date: Jan 2011
Location: Bangkok, Thailand
Posts: 31
Re: Stage IV Survivors out there?

Hello Annette and Pam,
Thank you for checking in.
I like the fact from Annette that "they are out there living their life".
Because of today technology, there are many stage IV breast cancer survivors i believe. I really hope one day it will be like HIV that we can live with the control from medicine and no more death sentence.
Love you all,
Gift
__________________
dx July 2010 with ER 80% PR - Her2 +++, 7 cm tumor
3 rounds AC (stop after round 3 since the tumor didn't shrink)
3 rounds Herceptin until tumor gets smaller to 4 cm
Lumpectomy on 12 Dec 2010
TCH x 4 (6 are planned but low WBC), 35 hits Radiation, and one year Herceptin
Jan 2014: met to bladder and then liver and lungs
Jan 2014: Operation to remove 3 cm. tumor from bladder
May 2014: started Taxotexe & Tratuzumap (either Herceptin or Herculis, being a part of Mylan research)
Oct 2014, 3: finished 8 cycles of Taxotere & Tratuzumap
Oct 2014, 24: only Tratuzumap every 3 weeks
Jul 2015: progress in bladder - operation and keep on Tratuzumap
Dec 2015: progress in bladder still & met to ovaries
Gift is offline   Reply With Quote
Old 10-25-2014, 06:06 AM   #7
Mtngrl
Senior Member
 
Mtngrl's Avatar
 
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: Stage IV Survivors out there?

Dear Gift,

I, too, find StephN's story inspiring, especially when I read studies of long-term survivors who are ER-positive, or only have bone mets, or are oligometastatic (only one, or just a few, mets.) I'm not like any of those, and neither is she. She had brain mets! She had too many liver mets to count! And yet, here she is.

Like many others, I appear to need "Herceptin-plus" to control my cancer. I had my most significant progression (a relative term, to be sure--it wasn't a whole lot) while on Herceptin and Arimidex. Since it turns out my cancer is no longer ER-positive, that amounted to being only on Herceptin. But with various combinations of Herceptin plus something else (Perjeta and Xeloda right now) I've been mostly stable and functioning well.

You can get lots of other stories on this thread: http://her2support.org/vbulletin/sho...=calling+stage
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
Mtngrl is offline   Reply With Quote
Old 10-27-2014, 12:11 PM   #8
annettchen
Senior Member
 
Join Date: Mar 2014
Posts: 94
Re: Stage IV Survivors out there?

Hi Gift,

just wanted to let you know - had my first re-scan after 3 months of Herceptin / Perjeta / Xgeva only. They did CT, Breast US, blood work - and an Echo just to make sure my heart is dealing ok with the Herceptin.

I'm stable!

I know this does not make me a long term survivor, but it's a step on the way, and I was relieved to get confirmation that I don't seem to need Chemo at this point to keep the tabs on cancer...

I'm sure it will be the same for you!
__________________
Annette
----------------------------------------
03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.

Last edited by annettchen; 10-30-2014 at 07:46 AM.. Reason: Typo
annettchen is offline   Reply With Quote
Old 10-30-2014, 03:00 AM   #9
Gift
Senior Member
 
Gift's Avatar
 
Join Date: Jan 2011
Location: Bangkok, Thailand
Posts: 31
Re: Stage IV Survivors out there?

Dear Mtngrl, Thank you for the link. The stories over there have given me a lot of hope.

All the BEST for you Ladies,
Gift
__________________
dx July 2010 with ER 80% PR - Her2 +++, 7 cm tumor
3 rounds AC (stop after round 3 since the tumor didn't shrink)
3 rounds Herceptin until tumor gets smaller to 4 cm
Lumpectomy on 12 Dec 2010
TCH x 4 (6 are planned but low WBC), 35 hits Radiation, and one year Herceptin
Jan 2014: met to bladder and then liver and lungs
Jan 2014: Operation to remove 3 cm. tumor from bladder
May 2014: started Taxotexe & Tratuzumap (either Herceptin or Herculis, being a part of Mylan research)
Oct 2014, 3: finished 8 cycles of Taxotere & Tratuzumap
Oct 2014, 24: only Tratuzumap every 3 weeks
Jul 2015: progress in bladder - operation and keep on Tratuzumap
Dec 2015: progress in bladder still & met to ovaries
Gift is offline   Reply With Quote
Old 11-17-2014, 08:02 AM   #10
sandra85208
Member
 
Join Date: Nov 2014
Posts: 8
Re: Stage IV Survivors out there?

Dear Gift: How are you today? I think we had the same dx. I was in a clinical trial. Do you have access to clinical trials??
__________________
5/06/DX: Stage 3 B Her2 positive

7 cc tumor positive lymph nodes

6/24/11 12 weeks of Taxol and 12 weeks of neratinib clinical trial for late stage cancer

I spy clinical trial drug for 12 weeks
240 mg of neratinib q day

10/11/1011

8 weeks of A/C

12/06/11 Surgery # 2
double mastectomy both breasts

1/31/11
35 rounds of RAD

1/31/11
Herceptin 13 treatments

6/06/12
inserters Surgery # 3

05/26/13
Implants Surgery # 4

11/26/13
Removal of Right Implant
Surgery # 5

therapy, therapy, therapy
Depression from hell

Stopped working

11/04/2014
Reconstructive Surgery #6

seeing doctor today
sandra85208 is offline   Reply With Quote
Old 11-17-2014, 08:03 AM   #11
sandra85208
Member
 
Join Date: Nov 2014
Posts: 8
Re: Stage IV Survivors out there?

Gift please contact me at sandra85208@gmail.com
__________________
5/06/DX: Stage 3 B Her2 positive

7 cc tumor positive lymph nodes

6/24/11 12 weeks of Taxol and 12 weeks of neratinib clinical trial for late stage cancer

I spy clinical trial drug for 12 weeks
240 mg of neratinib q day

10/11/1011

8 weeks of A/C

12/06/11 Surgery # 2
double mastectomy both breasts

1/31/11
35 rounds of RAD

1/31/11
Herceptin 13 treatments

6/06/12
inserters Surgery # 3

05/26/13
Implants Surgery # 4

11/26/13
Removal of Right Implant
Surgery # 5

therapy, therapy, therapy
Depression from hell

Stopped working

11/04/2014
Reconstructive Surgery #6

seeing doctor today
sandra85208 is offline   Reply With Quote
Old 12-05-2014, 07:19 PM   #12
Gabrielle
Senior Member
 
Gabrielle's Avatar
 
Join Date: May 2006
Posts: 35
Re: Stage IV Survivors out there?

Wonderful news, Steph!
Gabrielle 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 01:10 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2017, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter