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09-18-2008, 07:46 AM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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count me in...and out
Hi everyone, I was waiting on results to post and just trying to live a relatively normal life. I am sorry for some of you and recurrences and struggles with all of this crazy stuff. And happy for those who are truckin' along okay.
I had bad news yesterday. It looks like herceptin dm1 is not working. I had may second CT since starting in June and it showed a fair amount of progression in the liver. The one prior showed stability. My tumor markers are reflective of the progression as well. I am so mad and scared. I can't believe it stopped working already. I wonder if it just was never the drug for me or if the cancer is just too aggressive and nothing will work well.
My specialist wants to see the CT with his own eyes to make sure, but we are pretty sure, really, that it is what it is. He said he would call by friday and he will be calling and talking to my local onc too. I don't know what the plan will be. I hope there is one.
I am wondering about Tykerb/Herceptin/Avastin or some combination thereof. Otherwise another trial? I don't know.
I am very sad and feel a little hopeless and mad as h-e-double bamboo shoots. I think the world of you all and would love a refresher on your successful options and opinions for treatment. With so much love, Joy
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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09-18-2008, 09:26 AM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Joy - I am sorry to hear that the trial isn't getting you continued good results~
I too am awaiting results from my PET... and crossing my fingers.
If it shows any progression in the body, we plan to add Herceptin back in with my Tykerb/Xeloda...
I know so many folks have had great results with Navalbine and liver mets, have you and your doc talked about that in combo with something else?
Keep us posted!
__________________
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."
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09-18-2008, 09:49 AM
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#3
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Senior Member
Join Date: Nov 2006
Location: South Carolina
Posts: 183
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Joy,
I am so sorry to hear your news. A few post back there was a thread on Rexin-G. Ask your Onc about this new drug to see if there is a trial for it.
I know I am probably pulling at strings, but have your tried Chrisy's liver de-tox recipe? It really helped her get her liver counts down.
Keep on fighting to find the drug that works for you.
Joy and hutchibk, my thougts and prayers are with you.
__________________
Anita
er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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09-18-2008, 10:16 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Dang, Joy.
I was getting ready to pm you as I thought it would be about time for more information. I was so hopeful that the DM1 would work for you, as of course were you. But as you know, everyone is different and when one therapy fails, the next one may very well succeed. That is of course especially the case with the "experimental" therapies.
I know you and your team will come up with a plan for the next step.
You had in the past been doing research into RFA and the Theraspheres. Are either of these still options you could pursue? Lily is being treated with the spheres. I don't know if she has much info on response yet.
I know you're feeling sad and maybe a little defeated. You've got every right to feel that way and if you want to cry or scream or throw things, go ahead and do it. I just wish I could hug you right now.
But although you may be weary, you are NOT yet defeated!
Much much love and many prayers are whirling through the universe...to you right now.
Love
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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09-18-2008, 10:30 AM
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#5
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Senior Member
Join Date: Jul 2006
Posts: 59
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S*it, s*it...Joy I am so sorry...argh...sending you strength and energy to formulate your plan of attack, Hang on girl..we love you and wont let anything take the JOY out of JOY!
Marcia
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09-18-2008, 12:02 PM
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#6
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Joy,
I can't offer any advice on tx options but do want to say that I'm so sorry this trial isn't working for you. Damn!!! I wish I could help...OH HOW I WISH I COULD.......
Love to you Joy...
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
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09-18-2008, 01:11 PM
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#7
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi JoyGirl
Sorry 'bout this. You can feel any way you want, for today and
maybe part of tomorrow. Then it's "onward and upward". I know
your team will have lots of options for you. Good luck with all of
this.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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09-18-2008, 01:33 PM
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#8
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Senior Member
Join Date: Nov 2004
Posts: 190
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Hi Joy,
Sorry to hear the news. Have you tried RFA or cyberknife?
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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09-18-2008, 01:42 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Joy I'm sorry I don't have any advice for you but am sorry to hear this and hope your onc has a new plan of attack that'll work for you.
__________________
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!
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09-18-2008, 02:01 PM
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#10
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Sorry to hear your bad news, but I am sure your doctors must be working on something new for you to try. I know you are down, but stay strong.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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09-18-2008, 02:42 PM
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#11
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Senior Member
Join Date: Nov 2006
Location: London, England
Posts: 96
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Joy, I remember your name and your beautiful picture, from when I used to come to this fantastic site in the midst of my 2006-7 bc experience. I'm very sorry to hear about this. It must be exhausting for you to be on this rollercoaster of hopes raised and hopes dashed.
I have no opinions or help to offer, as it's out of my experience, other than to say that i'm thinking of you and sending a hug from across the ocean.
Love
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...
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09-18-2008, 02:54 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Joy
I feel bad and mad for you also. I wish I could say something very profound, but words escape me. All I can say is that we're rooting for you and your new plan of attack. Be well.
__________________
Diagnosed 4/03/03, age 50
3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
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09-18-2008, 03:13 PM
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#13
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Joy, I'm sorry to hear about your results. I was just thinking of you yesterday. Please know that my thoughts and prayers are with you. Keep looking for a treatment that will work for you. I wish I could help. Love, Bill
__________________
For Nicola
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09-18-2008, 04:01 PM
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#14
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Senior Member
Join Date: May 2006
Posts: 3,142
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count me in and out
I was very sorry to read your news. Don't give up. Keep on truckin". Maybe you can do a little research or talk to some other docs and see if they have suggetions you could present to your oncologist. One doc doesn't know everything about everything. All docs have had different experiences with patients and may have special interests in different areas than your oncologist. You might want to write down the suggestions of other docs and ask your oncologist about them.
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09-18-2008, 05:35 PM
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#15
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Joy, I am sorry to hear of your progression, but tomorrow the sun will shine and your onc. and his team will have a plan for you.
all the best
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!!
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09-18-2008, 06:17 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Joy,
So sorry to hear of your progression, but there MUST be another treatment just waiting for you to find it. I will keep you and your team in my thoughts and prayers, praying for a quick new answer.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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09-18-2008, 07:18 PM
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#17
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Joy,
I'm sorry that it seems your liver mets are progressing on the trial. I understand how you feel. Last year I had a wedge resection for a solitary pulmonary nodule and I had a "big" idea that I would get something like five years out of it but I got only one year. It was a local recurrence, and I had radiofrequency ablation in mid August. I'm due for my first follow-up scan next week.
I've been only on Herceptin since recurring but will probably be adding Xeloda even if the scan is clear.
Do you have only liver mets? Did you every think of doing RFA? It's done for primary and secondary liver cancer much more frequently than in the lung, and I think in some cases there are really good results for tumors under 3.5 cms.
If anything it could lighten the tumor load which would help make chemo more effective.
It's just a suggestion. I'll keep praying that you will find a good solution.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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09-18-2008, 07:54 PM
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#18
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Senior Member
Join Date: Jan 2008
Location: Carmel, Indiana
Posts: 98
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Joy, that SUCKS! Keep your chin up and keep fighting. We're here for you.
Love,
Beth
__________________
DX 9-19-07 at age 40
DCIS, Inv. Duct. Car. 3 cm
Positive lymph node biopsy
Er+Pr+Her+++
Carboplatin/Taxotere/Herceptin
10-1-07 -- 1-16-08
Herceptin every 3 weeks until 9/24/08
Lump. and node dissection 2-12-08
BRCA1 and 2 negative
30 rads finished 4-23-08
oophorectomy 5-6-08
Femara started 5/25/08
Zometa for osteoporosis every 6 mo. started 9-24-08
Married 16 years!
3 kids - daughter (10), twin sons (7)
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09-18-2008, 08:21 PM
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#19
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Senior Member
Join Date: Apr 2007
Posts: 292
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Joy,
I don't have any advice for you, but I am so sorry that you are going through this! BC is just one unfair b*tch.
I will be thinking of you and checking your posts.
Take care,
Krista
__________________
Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA
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09-18-2008, 11:29 PM
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#20
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Joy, Oh Crap!!
Wish I could offer you some advice, but I do want you to know I feel for you and I am with you all the way.
****hugs to you*****
We will all help you get through this together.
Lots of love.,
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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