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10-12-2010, 10:51 PM
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#1
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Member
Join Date: Oct 2010
Location: Alaska
Posts: 24
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Just diagnosed on 9/23/10.
I had a routine mammogram and it showed a suspicious mass. I had a biopsy and it was positive for Invasive Ductal Carcinom, High Grade, ER +, PR weak, and her2neu 3+. My MRI showed lymph node involvement. PET scan showed the first chain of lymph nodes involved, but no metastasis to other parts of my body. I was suppose to start on TCH today but my Muga scan showed my left ventricle EF at 41.7%, so I couldn't start the herceptin today. I just had the TC.
I am scheduled to see a cardiologist and will have an echo tomorrow. I am so dissapointed about not being able to start the herceptin!
I am 51 years old, overweight and have been on blood pressure meds since I was 30. I have never had any symptoms of heart disease.
I am hoping there will be a way to increase my heart function. I really want to be on Herceptin!! |
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10-12-2010, 11:36 PM
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#2
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Just diagnosed on 9/23/10.
Rejoyce, glad you found us. Sorry you had to! Sounds like you have encountered a bump in the road but perhaps further tests will prove a better outcome. Good you have a cardiologist on board. Keep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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10-13-2010, 02:30 AM
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#3
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Just diagnosed on 9/23/10.
Hi Rejoice,
Glad you found us but sorry you have reason to be here. We will try to help you get through this as best as we can.
So far your path report doesn't sound too bad, and it's good that you started chemo. Have you had surgery? Do you know the size of your tumor?
There are several ways to improve your ejections fraction, so hopefully that will enable you to have herceptin in the future. I just read on another list that even a few doses of herceptin will give you excellent protection, so perhaps that will be the best way for you. For now the chemo will start mopping up those pesky cancer cells.
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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10-13-2010, 07:41 PM
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#4
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Just diagnosed on 9/23/10.
Rejoice,
There are a few supplements that will help bring up that E.F.: CoQ10, Grape Seed Extract, and Super EPA (fish oil). Olive oil taken with Herceptin is believed to boost its effectiveness.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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10-13-2010, 09:29 PM
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#5
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Member
Join Date: Oct 2010
Location: Alaska
Posts: 24
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Re: Just diagnosed on 9/23/10.
Thank you for your comments! I have three tumors that cover about a 6cm. area. One of them is very close to the chest wall.
I just had my echo today. Very interesting results. the tech let me look over her shoulder and she had 6 measurements of the E.F. all between 60 and 68%! How could my Muga scan show 41.7%?? Of course the radiologist still has to read it. I can't wait to see my doctor next week to see what he says.
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10-14-2010, 09:32 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Just diagnosed on 9/23/10.
The tests measure different things; and both, particularly the echo, are highly dependent on the skill of the technician. They are both art and science. The fact that it appears you may be having conflicting results points to getting it tested again (a tie breaker?)
Maybe the news is better than you thought.
__________________
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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10-14-2010, 02:02 PM
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#7
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Senior Member
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
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Re: Just diagnosed on 9/23/10.
Lots of Love and Good Luck to you Rejoyce~~~
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED
12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line
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11-02-2010, 09:58 PM
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#8
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Member
Join Date: Oct 2010
Location: Alaska
Posts: 24
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Re: Just diagnosed on 9/23/10.
I had the echocardiaram and it showed my function at 62-68%!! What a difference from the Mugga Scan. I saw the cardiologist and he said my heart was in great shape and I could start the Herceptin. I will have echo's instead of Mugga scans from now on. The cardiologist and Oncologist said they have never seen such a difference between the 2 tests.
I had my first dose of Herceptin with chemo this morning!
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11-02-2010, 11:28 PM
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#9
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Just diagnosed on 9/23/10.
Rejoyce,
That is wonderful news...now you can finally move forward. I'm glad your cardio doc gave you the green light to go ahead with Herceptin. That will give you peace of mind and that's important. Great ECHO results. 
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.
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11-03-2010, 06:51 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Just diagnosed on 9/23/10.
Dear Rejoyce
Perhaps the difference in the 2 tests was that your Muga reading was actually someone else's. You know your Echo was yours because the technician gave you a pretty clear indication that you were around 60% during the test but perhaps they got your muga mixed up with someone else's. Maybe not. Just thinking out loud here.
I am sorry you have had to join our little club here but we are here to support you through your journey. Herceptin has changed the face of Her2+ breast cancer. Come here whenever you need someone. Someone is always around to give you support.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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11-03-2010, 12:51 PM
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#11
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Just diagnosed on 9/23/10.
Becky,
I was also told at the testing center where I had my MUGA's that it was important to have all your MUGA's done on the same machine, and preferably with the same tech, if possible, because there is variation from machine to machine and tech to tech. Rejoyce's facility could have had an issue with the machine or the tech, too.
Rejoyce, I really like your screen name! Best of luck to you with your treatment plan.
Hopeful
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11-03-2010, 03:18 PM
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#12
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Just diagnosed on 9/23/10.
Glad you will be able to get your Herceptin after all. Now on to your Dance with NED! (No Evidence of Disease)
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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11-03-2010, 10:33 PM
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#13
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Just diagnosed on 9/23/10.
Thanks for the good news. My Mother-in-law's neighbor/friend since childhood also signs 'rejoyce' on her email.
__________________
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
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11-04-2010, 06:40 AM
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#14
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Senior Member
Join Date: Jan 2010
Location: Wisconsin
Posts: 80
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Re: Just diagnosed on 9/23/10.
I wish you the best of luck during your treatment. YAY, you get to have your Herceptin, what a blessing! GOOD LUCK
__________________
Sandra from WI
Stage 1, Tumor 1.4 cm, Grade 3, ER-/PR-/HER2+++
Poorly Differentiated IDC with comedo type necrosis with DCIS/ALH :(
Mammogram: 11/12/09
Call Back Mammo: 11/17/09
Biopsy: 11/25/09
Diagnosis Call: 12/2/09
Partial MX: 12/16/09. 3 LN clean.
6 Cycles Chemo (TCH) Jan-April/10; Herceptin all of 2010; 33 Rads complete 7/10. Herceptin done 12/10.
FOLLOW UPS:
Bil mammo, and Breast MRI 12/10 - CLEAN! (after a second lump was biopsied and BENIGN - showed giant cell reaction?).
Bil mammo 6/11 - CLEAN!
Left mammo 12/11 - CLEAN!
PET/CT scan 4/6/12 - CLEAN!
Bil mammo 8/12 - CLEAN!
November 2012 - Gallbladder Removed.
Bil MRI 2/13 - CLEAN!
http://www.caringbridge.org/visit/sandragreen
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11-04-2010, 10:47 AM
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#15
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Senior Member
Join Date: Aug 2010
Posts: 45
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Re: Just diagnosed on 9/23/10.
Good luck sister. I'm sorry we had to meet since there is only one reason we are both here. But, as your name states, rejoice as we are lucky to live in a world with Herceptin and this group. email me off group if you want marafaust5@gmail.com |
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