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Old 05-06-2014, 04:52 PM   #1
Lnmum
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Anybody else ER+/PR+/HER2+++ BRCA 2 +?

If you are triple positive and BCRA2 +,
Will you share your treatment protocol?
I had stage 1 IDC 1.3 cm partial mastectomy of the right breast 1/14
Taxol/Herceptin 7/12 rounds

I plan oopherctomy this summer and bilateral mastectomy with reconstruction in the fall. Currently NED!

I want to stop the taxol, but continue Herceptin. I have started experiencing chemo brain this week. That is scary!

Please share your experience and any recommendations.

Thank you!
Loren
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Old 05-06-2014, 06:27 PM   #2
suzan w
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Hi Loren,
I am all of the above!!! I did not find out about my BRCA status until I was finished with all of my other treatment. The real reason I wanted the BRCA was to decide about my ovaries. A week after the BRCA test results came back...out with the ovaries, and tubes. You can read my signature to see just what treatments I have had. Please feel free to ask a million questions!!
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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!!
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Old 05-06-2014, 07:09 PM   #3
Nurse4u2day
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Lnmum,
I don't have triple+ not brca+ but you can read my signature.
I as of today finished my 12th and final chemo tx. I am doing the taxol /herceptin ( or was)
And yes the chemo brain has kicked in!!! It sucks and worries me as I am a nurse and once I am done with all this tx I want to go back to nursing but not able if chemo brain doesn't go away. In a chit chat with my oncologist she says it should and may take a 2-3 months to completely recover from it. I also have a little bit of neuropathy . As for the taxol my onco has said around round 9 I have gotten most of what I need the rest is just like icing on the cake! ( she was concerned about the neuropathy ) my response " Well I like icing on the cake it's the best part!". Again I didn't come this far and fight this hard to stop. Chemo brain/ neuropathy nope nope I rather tolerate that then have but what ifs. Take it week by week and know it will go away. Ofcourse easier said then done. And in my case my youngest is 17 and I am on disability so it's a bit easier for me to accept the chemo brain.
Best wishes with your choices.
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 05-07-2014, 12:32 AM   #4
Deltadiva
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

We have some black humor about chemo brain in my family. I'm a terrible back seat driver (well, my honey misses a lot of ) turns). Only now, half the time I'm wrong. He loves it.
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First occurrence: found lump in my left breast in 2002. 1.4 cm Stage I Grade I Node neg ER+ PR+ HER2 neg (didn't even know what HER2 meant). Lumpectomy, radiation, 5 years Arimedex.
Second occurrence: Oct. 2013 I found a lump in my right breast 3 months after a clear mammo.
1.5 IDC Stage I, node neg, Grade III.
Lumpectomy in November.
First path report ER+ 10% PR- HER2 neg. two margins not clear. Sample sent for Oncotype Dx test. After much delay and confusion, it turned out there are two cell lines. The ER+ tissue has an RS score of 37. The second cell type is ER-PR- HER2 +++. This double tissue type has only been found by the Oncotype lab 3 times for the entire US since they started doing the test. I'd like to be unique some other way!
October 2013 double mastectomy without reconstruction.
Treatment plan: 6 infusions of TCH then the rest of the year Herceptin, and Arimidex forever. After all this, my chance of dying from cancer in the next 10 years is probably less than dying from something else!
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Old 05-08-2014, 05:40 AM   #5
Gail
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Hi Loren

I'm triple positive and I'm waiting on my BRCA testing to come back. I've completed 4 rounds of AC and I'm due for round 5 of my 12 taxol rounds tomorrow. Herceptin is occurring every 3 weeks now til April next year.

I'm Aussie so things may be different here. It's expensive to be tested for BRCA so it's taken a few months for me to qualify. Regardless of the BRCA results it won't effect my current chemo program but it will change my treatment plan in that I will have a double mastectomy and ovaries removed if I am positive which means I won't do the radio that is currently scheduled for July.

I've decided to treat my chemo brain the same as when I was pregnant. I'm just going to be dumb for a while but it will all pass. For me it helps to remember just how terrified I was in the first few weeks after diagnosis. For me nothing has been worse than the whole "not knowing". Now I have a program of treatment that I have to follow. It has a start, a midpoint and a finishing point and I just have to get through it. Can you tell I project manage ha ha.

I'm actually finding the taxol a lot worse than everyone said. It's supposed to be a breeze compared to AC but I'm not finding that. I have it on a Friday, get my dex rash Saturday then start feeling terrible Sunday night. This starts to clear on Tuesday and I feel OK for Wednesday and Thursday and then start again.

I try to arrange lunches with friends on Wednesday and Thursday to give me something to look forward to and then just hide on my bad days. Just have to get through.

Good luck. Don't stress too much about the chemo brain. Everyone in my family just takes me mickey out of me cause I'm so dumb. Best to laugh it off. It won't last forever and you will be able to laugh about it when you look back.

Cheers

Gail
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DX 5th November 2013
Age 49 premenopausal
Lumpectomy (left) 19th November 2013
8mm, Grade 3 IDC,
Stage 1, node negative
ER++ PR+++ Her2+++, Ki67 70 - 80%
BRCA tested - negative
AC chemo began 3rd January 2014 (4 rounds) completed
Paclitaxel weekly for 12 rounds cancelled after round 6 due to neuropathy
Docetaxel began 30th May 2014 - 2 rounds completed 20th June
Herceptin (3 weekly for 1 year) began 11th April 2014
Radio completed 2nd September 2014
Long dates cause I'm an Aussie and will mess up if I try to do it your way :)

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Old 05-08-2014, 09:16 AM   #6
Lnmum
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Delta Diva: I have a blonde wig I wear as a joke to signify I am "Blondie", the brain has gone! Seriously I forgot to turn the stove off 3 times this week. And let the coffe maker on once. Those are things I NEVER do! Blondie does. ( please don't take offense if you are blonde; some of my dearest friend are blonde geniuses).
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Old 05-08-2014, 09:31 AM   #7
Lnmum
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

I didn't know that I had the BRCA 2 mutation until I was nearly half way through my chemo treatment. I was going to have to pay out of pocket if it came back negative.
I was 50 at time of diagnosis. My mom's mother's sister died from ovarian/breast cancer in her early fifties and her mom's father died from colon cancer. My mom's dad's dad had breast cancer. Don't know any other history on mom's side. Mom died at 54. My father has two brothers who had prostate cancer. One died after a 20 year battle. The other one is alive and well (I hope). My dad at 63, with no cancer to my knowledge. No women had breast cancer on dad's side.
How did you determine your need for genetic testing?
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Old 05-08-2014, 09:34 AM   #8
Lnmum
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Nurse 4u2day, thx for your response. Because of what you said, I am sitting back at chemo bay for 8/12 Taxol/Herceptin treatments.
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Old 05-08-2014, 09:38 AM   #9
Lnmum
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Suzan, I'm under the influence of benedryl. I definitely will contact you as I clear up from this round of chemo. Take care! I'm on my way later today to discuss oopherectomy and schedule it.
Hugs to you and all, Loren
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Old 05-09-2014, 06:56 AM   #10
Gail
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

In Australia they review your family tree and give points per cancer type, age, age at death, recurrence etc. They paid very little attention to my paternal side but on my maternal side I had an Aunt diagnosed at age 36 with BC, another Aunt with BC at age 71, an uncle died from prostate cancer aged 55, my grandmother died from pancreatic cancer aged 84. Apparently BC, pancreatic and prostate cancer are all genetically connected hence I just scrapped through with enough points for free testing. There was no need to look beyond my maternal side as I had already qualified.

That's a really quick overview of something that has taken weeks so don't judge too quickly I can explain more if needed just let me know. Happy to have qualified for free testing and hoping I am negative.

Cheers

Gail
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DX 5th November 2013
Age 49 premenopausal
Lumpectomy (left) 19th November 2013
8mm, Grade 3 IDC,
Stage 1, node negative
ER++ PR+++ Her2+++, Ki67 70 - 80%
BRCA tested - negative
AC chemo began 3rd January 2014 (4 rounds) completed
Paclitaxel weekly for 12 rounds cancelled after round 6 due to neuropathy
Docetaxel began 30th May 2014 - 2 rounds completed 20th June
Herceptin (3 weekly for 1 year) began 11th April 2014
Radio completed 2nd September 2014
Long dates cause I'm an Aussie and will mess up if I try to do it your way :)

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Old 05-09-2014, 07:51 AM   #11
Lnmum
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Gail,
I hope your test comes back negative. Glad it's free! I'm not sure why it's so expensive. Here in the US it costs about $3000!

Btw, my 13 year old daughter chose Australia for her social studies project. She ate a vegamite sandwich. She said it was the worst thing she has ever tried;-)!

Back to you, when do you get your test results? I will pray for you to get the best results! And for your inner peace.
Loren
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Old 05-09-2014, 07:58 AM   #12
Gail
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Well it's $4,000 here and apparently quite time consuming re doing the test, monitoring and storage hence the time line and the cost. Indications here are that it is getting cheaper as the requests increase - the old supply and demand.

Ha ha that's awesome about the Vegemite. I love it but I also have a 13 year old that hates Vegemite and loves peanut butter. I tell her stories of peanut butter and jelly in the states and she is very keen. We are off to a newly opened Costco in Sydney in a few weeks so I will "educate" her taste buds then with a peanut butter and jelly purchase

Thanks for the good thoughts and I'll let you know how I go. Test results are 4 - 6 weeks away so around the end of June. Sigh .....

Cheers

Gail
__________________
DX 5th November 2013
Age 49 premenopausal
Lumpectomy (left) 19th November 2013
8mm, Grade 3 IDC,
Stage 1, node negative
ER++ PR+++ Her2+++, Ki67 70 - 80%
BRCA tested - negative
AC chemo began 3rd January 2014 (4 rounds) completed
Paclitaxel weekly for 12 rounds cancelled after round 6 due to neuropathy
Docetaxel began 30th May 2014 - 2 rounds completed 20th June
Herceptin (3 weekly for 1 year) began 11th April 2014
Radio completed 2nd September 2014
Long dates cause I'm an Aussie and will mess up if I try to do it your way :)

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Old 05-09-2014, 06:49 PM   #13
Soccermom
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Lnmum,
There's a great organization on the web dedicated to those who are BRCA+.
I've been affiliated with the org. for 12 years as my family history screamed "hereditary " but alas I am negative.
Great bunch over there ... PARP inhibitors ( targeted therapy)are being used for those who are BRCA+ so you'll have another weapon in your arsenal should you need it.
Check out the site as there's a wealth if I formation and their messages boards are very helpful.

www.facingourrisk.org

(FORCE)
Hope this info is helpful,
Marcia
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