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Old 05-06-2014, 04:25 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

Last edited by Lnmum; 05-06-2014 at 05:01 PM.. Reason: Duplicated
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Old 05-28-2014, 09:15 AM   #2
Soccermom
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Just saw your query.. No I tested negative for BRCA.
I don't know how/if that might influence your protocol. The FORCE website might be helpful
www.facingourrisk.org

Warmly ,
Marcia
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Old 05-28-2014, 12:36 PM   #3
suzan w
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

You can see my signature and what I have done!!
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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 05-28-2014, 01:41 PM   #4
'lizbeth
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

I am curious - why did you opt out of the Platinum Salt and only chose the Taxane for chemotherapy? I have always heard that Carboplatin or Cisplatin have effectiveness for the BRCA cancers.

I went on the National Cancer Institute's website and found a ton of info on the BRCA mutations.

Quote:
Because the products of the BRCA1 and BRCA2 genes are involved in DNA repair, some investigators have suggested that cancer cells with a harmful mutation in either of these genes may be more sensitive to anticancer agents that act by damaging DNA, such as cisplatin. In preclinical studies, drugs called PARP inhibitors, which block the repair of DNA damage, have been found to arrest the growth of cancer cells that have BRCA1 or BRCA2 mutations. These drugs have also shown some activity in cancer patients who carry BRCA1 or BRCA2 mutations, and researchers are continuing to develop and test these drugs.
I have a lot to say about the chemo brain. I was not aggressive enough about managing it with my medical team. I should have dose reduced the taxane sooner and skipped the final 2 treatments. I see that you have done 7/12 treatments? Are these weekly? Every 3 weeks? Most have 4 - 6 treatments total on the 3 week schedule. What's the story with 12 treatments?

I sacrificed significant cognitive function. I feel it reduced my quality of life for a minimum of 5 years, especially my work life.

I am not going to tell you more chemo is better. It doesn't really work like that.

You've already done 7 chemos and have a plan for prevention with the oophrectomy and the double mastectomy. And you will be on Herceptin for the full year. Sounds like a wise plan to me.
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Old 05-28-2014, 04:35 PM   #5
Lnmum
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

My oncologist said new research indicated 12 weekly treatments of Taxol with Herceptin was just as effective (if not more) as TAXOTERE/Carbo platinum/Herceptin 6 doses every three weeks. She said it was less toxic, too.
I did one more treatment 10 days ago. I opted out of taxol last week because the peripheral neuropathy was awful!
I meet with onco tomorrow. When we started the treatment plan, I did not know that I was BRCA 2+.
I want to discontinue Taxol. My brain is clearing and the neuropathy is lessening. But I have fear it will be permanent if I continue.
Thanks for the info. You're very resourceful.
__________________
Loren
11/3/13 mammogram age 50
11/27/13 follow up mammogram and right breast ultrasound. Radiologist showed me image of 3mm nodule. He said to wait 6 months for a follow up mammogram. I advocated for myself and requested a biopsy.
12/11/13 core biopsy with clip placed
1/6/14 Duke consult BC Treatment
1/30/14 partial right mastectomy, sentinel node biopsy 2 setinal nodes clear. 1.1 cm IDC, close margins.
3/13/14 met Dr Heather White in Greenville, NC. She is wonderful and my new oncologist.
3/18-19/14 Dr. White ordered pet scans, full body ct, bilateral MRIs and BRCA TEST.
3/20/14 5/15/14 chemo taxol/Herceptin 1x/week
3/25/14 port placement
4/17/14 BRCA2+
5/22/14 Herceptin only 1x every 3 was for a year. incomplete Taxol(neuropathy of hands and feet)
7/2/14 oopherctomy, salpingoopherectomy, hysterectomy at Vidante with Dr. Marie Rowe.
10/3/14 BMX/trams flap with Georgaide and Zenn at Duke.
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Old 05-28-2014, 08:21 PM   #6
'lizbeth
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Re: Anybody else ER+/PR+/HER2+++ BRCA 2 +?

Hello again,

I think you are on top of the cancer and your options. Good luck with convincing the oncologist to drop the last 4 taxanes infusions.

You also have quite a bit of anesthesia in your future with the upcoming surgeries. That was tough on my brain function.

I know what you mean about the BRCA testing. It would be better if they tested sooner, but they usually don't.

Exercise helped me quite a bit. You have the challenge of the neuropathy, but brisk walking is so healthy for us cancer survivors.

Keep us posted
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