 |
04-16-2007, 02:33 PM
|
#1
|
|
Member
Join Date: Jan 2006
Posts: 11
|
A Little Note of Hope for All
Dear Group Members:
I thought I would give you all a little news that may be encouraging for you. My wife, Lisa, had scans last week, brain MRI, CT Neck to Knees, and they were clean. This significance of this is that she is now a 15 year survivor, a 5 year survivor of a Stage IV recurrance and a two year survivor of a stroke and recurrance in 2005.
So far she has been through a great deal and suffers at this point from frequent nausea and the other side effects of herceptin, but the good news is that she is fine.
Hers is a long story which includes a vaccine treatment at the University of Washington which failed, but for now the weekly doses of Herceptin which she has received for the past 5 years seem to be doing the trick. We have Tykerb waiting in the wings and with luck we can keep this stuff at bay for a long time.
Our second daughter will be married this fall and we will be grandparents for the first time this fall. Truly God has been watching over us.
We hope that this story of survival gives hope and courage to all women suffering from this gastly disease.
Good Luck and God Bless!
Lisa and Brian
|
|
|
|
04-16-2007, 02:40 PM
|
#2
|
|
Senior Member
Join Date: Oct 2005
Posts: 215
|
Good news
Wow Brian, 15 years. That certainly is grounds for a celebration. What a journey the two of you have been on. I am just coming up to 2 years from Dx on the 26 th of this month, so you can see this is very encouraging news. I wish you both well and will keep you in my prayers for at least another 15 years. Jeanette
|
|
|
|
|
04-16-2007, 02:49 PM
|
#3
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
Thank you, Brian, for your post. I head out on Wed. for my second follow-up appointment after my completion of a year of herceptin. Your wife's story( and your story too!) is inspiration for us all. Keep up the good work!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
|
|
|
|
|
04-16-2007, 03:25 PM
|
#4
|
|
Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
|
It is always so encouraging to hear of how well so many are doing. If I've gained nothing else from this site I've learned that even if recurrence is part of my future that it does not mean a death sentence. So many strong, brave women visit this site everyday and show us that this disease can be dealt with and managed quite well and lives can be lived joyfully and fully.
Thanks so much for sharing.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
|
|
|
|
|
04-16-2007, 04:01 PM
|
#5
|
|
Senior Member
Join Date: Nov 2006
Location: London, England
Posts: 96
|
Dear Brian
How lovely to hear some good news. It sounds as if you've both been through so much these past few years. I feel touched that you wanted to share something positive here with us, it's a real treat! And I can imagine how happy you must be to have a wedding and a new life to come in the autumn. What nice things to look forward to.
Best wishes to you both
Caroline
__________________
Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years
Considering reconstruction, maybe soon...
|
|
|
|
|
04-16-2007, 05:33 PM
|
#6
|
|
Senior Member
Join Date: Oct 2005
Posts: 3,519
|
Brian - I just got chills and tears reading your post... I can't believe
what Lisa (and you and your family) have been through. And for her
to keep tooling along is SO inspirational!! And for you to post this for
us to put in our noggins and our hearts to counteract the fear, grief
and uncertainty that we struggle with due to this disease, is just such
a phenomenal gift. Thank you for your gift to us. Wow. I am so
touched and affected by your post. Much love to you and Lisa!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
|
|
|
|
|
04-16-2007, 06:54 PM
|
#7
|
|
Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
|
Thank you Brian for this uplifting information about your wife Lisa. It truly is inspiring for someone like me, not quite six months out from diagnosis, to hear this. It really gives me hope that this horrible disease can be conquered.
All the best to you and your family,
Caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
|
|
|
|
|
04-16-2007, 09:33 PM
|
#8
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Dear Brian and Lisa,
Big Thank you for sharing your happiness of 15 years winning the battle.
Wishing you continued success of 15 + 15+ and 15+ more years.
Also what better way to celebrate than to have your children with you -
Weddings, Births and Life all around you. Enjoy it all you deserve it.
You made me Smile Big Time!
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
|
|
|
|
|
04-16-2007, 09:35 PM
|
#9
|
|
Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
|
Brian,
Thank you for posting your wonderful news. You and Lisa have had quite a journey together. I always feel good when someone posts good news. Wishing you and Lisa many more years together.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
|
|
|
|
|
04-16-2007, 10:36 PM
|
#10
|
|
Junior Member
Join Date: Apr 2007
Location: Dallas, TX
Posts: 2
|
Hi Brian and Lisa,
I am new to this board. A good friend here also failed the UW vaccine (with brain mets no less!), and now I have been diagnosed with this terrible disease. I asked my MD Anderson docs about the HER2 vaccines, and they advised against trying any of them. I hope I am not dashing the hopes of anyone in such a trial, but all results have been negative or worse than negative according to my doctors. I have been looking for any positive results that have been published but have yet to find any. Are there other trials for metastatic disease anyone would recommend? (I have stable disease at present, plans to go on Tykerb if need be, but would love to try something new and different!)
Thank you for any opinions. Bev
|
|
|
|
|
04-16-2007, 11:37 PM
|
#11
|
|
Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
|
Brian, Thank you so much for sharing that with us. I know it does me a world of good to hear such an encouraging story. Lisa has been through alot and is one very strong & amazing lady. She sounds like a lucky women to have such a terrific man by her side. It brought tears to my eyes just seeing such a loving husband take the time to share her story with us.
Here's to good times to both of you. I am sure that first grandchild you will have this fall, will bring you both many good times and loads of happiness.  Thanks again for taking the time to share Lisa's story with us. What a awesome and very special man you are. I will be keeping you both in my thoughts and prayers.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
|
|
|
|
|
04-17-2007, 12:49 AM
|
#12
|
|
Senior Member
Join Date: Oct 2005
Location: southern california
Posts: 287
|
Way To Go!!!
|
|
|
|
|
04-17-2007, 04:21 AM
|
#13
|
|
Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
|
GOOD NEWS BRIAN & LISA
So good to hear such good news. Please convey to Lisa my congrats and to keep up the good work.
NOW....
you both enjoy that new grandbaby coming and the upcoming wedding. This is what living is all about.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
|
|
|
|
|
04-17-2007, 08:27 AM
|
#14
|
|
Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
|
Brian - Congragulations on your good news. It is so uplifiting for me to read success stories of those who have successfully continue to beat back this disease (just as I intend to do). Enjoy that grandchild when it gets here, they are one of lifes greatest experiences!
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
|
|
|
|
|
04-17-2007, 12:21 PM
|
#15
|
|
Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
|
Dear Brian and Lisa,
Thank you for taking the time to bring such uplifting, inspiring and positive news to all of us here on this forum. We tend to lose sight of the fact that their are such long term survivors because the ones most often active on here, are those going through the worst or who have not been so fortunate. I am thrilled that this is not the case for you and so many others we might not hear from on a regular basis. I wish you and Lisa many many more years together filled with good health. Thank God for Herceptin and Tykerb and thank God for this support forum and it's wonderful members.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
|
|
|
|
|
04-17-2007, 05:07 PM
|
#16
|
|
Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
|
Impressed, encouraged, and so excited for you! I think I'll put myself in your mode in my mind and just linger a while!!!! thanks for taking time to share. Seems that the days I need to be encouraged, someone provides just the dose of hope needed. Thanks for being such a great warrior! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
|
|
|
|
|
04-17-2007, 09:46 PM
|
#17
|
|
Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
|
Thank you for sharing your wonderful news. It is encouraging to hear and I am sending you and your family best wishes!!
|
|
|
|
|
04-18-2007, 04:28 PM
|
#18
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
I just love reading stories like this ,congrats to Lisa and thank you
for posting to give us all hope!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
|
|
|
|
|
04-18-2007, 06:34 PM
|
#19
|
|
Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
|
Dear Brian,
I have been reading your posts for a long, long time. I love to hear of Lisa's progress ... and that is just what it is...progress. I remember the first time I logged onto this site; worrying about prognosis; you were one the the first people to post telling me the positive side of Lisa's journey and I have held onto her strength ever since.
Anytime one of us makes it 5 years or more as a stage IV; well that is nothing short of a miracle. And what a rough ride your dear Lisa has had.
I am especially grateful for your posts of progress. As a pretty uneventful stage 4 survivor for 3 years and holding (with just maintenance herceptin) I appreciate hearing the hopeful but realistic updates of your journey.
Please give your angel a squeeze and a hug from this friend in Connecticut.
Love Kim from CT
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 02:56 PM.
|
Linear Mode
