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Old 10-15-2015, 04:55 PM   #1
TripletMom
Junior Member
 
Join Date: Oct 2015
Posts: 3
BRCA2+ and HER2+

I am new to the group with a diagnosis on Sept 4, 2015 and a double mastectomy on Oct 7. I would like to visit with someone from the group that is also BRCA2+ as I would like to understand what chemo treatment was prescribed. Thanks!
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Old 10-15-2015, 07:58 PM   #2
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: BRCA2+ and HER2+

Hi TripletMom,

I haven't seen many discussions here about whether BRCA+ status affects which treatment you get. For the most part, the standard of care for early stage (Stages 1-3) HER2+++ breast cancer is TCHP -- taxotere, carboplatin, Herceptin, and Perjeta. If you were diagnosed at Stage 4, please let everyone here know and there are women here who can discuss those treatments with you.

I didn't qualify for the Perjeta two years ago because back then you had to be Stage 2 to get it; now I think it might be offered to Stage 1 patients, but not universally yet.

There is a search button up in the right hand corner where you can enter your diagnosis history, tumor particulars (estrogen pos/neg/etc) and where you currently are at in treatment; see my signature for an example.

Welcome! I was tested for the gene but my insurance would not pay for the results because I was over age 45 when I was diagnosed (I was 56, age 58 now). But I am pretty sure it was negative, I have no family history on either side of my family whatsoever, and many aunts and great aunts, etc who were never diagnosed with either breast cancer or ovarian cancer.

Sorry you had to join us ... but this is an incredibly supportive forum; I am sure when someone who is BRCA+ sees this they will chime right in.

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 10-16-2015, 03:16 AM   #3
MaineRottweilers
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Join Date: May 2013
Posts: 570
Re: BRCA2+ and HER2+

I do not know my BRCA status so I cannot comment to your question. At original Dx, I didn't have health insurance and no that I do have health insurance, they will not cover testing for my recurrence.

I just wanted to welcome you to this group, sadly. You'll not find a kinder, more informed, positive group of ladies (and a sprinkling of supermen).
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 10-23-2015, 10:33 AM   #4
JennSmith58
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Join Date: Apr 2015
Posts: 10
Re: BRCA2+ and HER2+

I am BRCA2 and Her2 positive. I was diagnosed in April with my second breast cancer, and was only tested for BRCA after that diagnosis. I am Stage II.
I participated in a clinical trial with neoadjuvant Herceptin/Perjeta through the beginning of July, followed by 6 rounds of Herceptin/Perjeta/Taxotere/Carboplatin. I will receive my last chemo on Oct. 28, and will continue with Herceptin through April.
My surgery will be the first week of January.
Let me know if there are any questions I can help you with.
Sorry to meet under these circumstances, but survivors are the absolute best for support and information!
DCIS 4/15/2005, Left
ER/PR pos., grade 3
Lumpectomy, 32 rad tx, tamoxifen 5 yrs.
IDC 4/2/2015, Right
ER/PR neg., Her2+++, stage 2
Herceptin/Perjeta clinical trial begun 4/22/15
Herceptin/Perjeta/Taxotere/Carboplatin begun 7/15/15
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Old 11-03-2015, 01:28 PM   #5
exercise_guru
Junior Member
 
Join Date: Nov 2015
Posts: 2
Re: BRCA2+ and HER2+

I am not BRCA2 but I am Palb2 Her2+ ER+/PR+ double breast cancer

my treatment is dictated by the size of the tumor less than 2 cm. I know there is a trials for Her2+ that is you might want to see if you are eligible. I had a bilateral breast cancer and my nodes were negative.


my treatment
age 42
Bilateral BMX
TCH 6 cycles
oophrectomy
Arimidex

If you find out about "Reach for Recovery" and "Force" you can get in contact with other BRCA2 Breast Cancer candidates.
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Old 11-03-2015, 01:50 PM   #6
TripletMom
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Join Date: Oct 2015
Posts: 3
Re: BRCA2+ and HER2+

I was diagnosed at Stage 2 and went through my double mastectomy. Nothing in the lymph nodes and so I have my portacath put in tomorrow (Wed, Nov 4, 2015) and then first chemo starts (Thurs. Nov. 5) -- I am being given TCH and not P (I believe that is because the oncologist said the cancer was not in sentinel lymph nodes. Because of the BRCA2+, however, I will have to do a total hysterectomy in April, 2016. Have any of you had the total hysterectomy because of the BRCA2+? Thanks all and so glad I am part of this support group...
JOAN
__________________
TripletMom (Joan)
3-24-16 -- Due to BRCA2+, I had my total hysterectomy performed via DaVinci and laparoscopically
1-27-16 --- LAST Chemo Treatment; TCH; will continue with the Herceptin until Nov. 4, 2016
11-06-15 --- Neulasta dispensed at 7 p.m. (I do this 27 hours after each treatment) - made me tired and achy
11-05-15 --- FIRST Chemo treatment; 5 hours; TCH; nurse gave me the On-Body Neulasta which was to be dispersed on the following day 25 hours later
11-04-15 --- Portacath inserted; had issues with finding a vein for anesthesia; 5 trys. While in surgery for the port, the surgeon could not insert the portacath on the right or the left side so went straight to the jugular on the left side - very uncomfortable.
10-28-15 --- EchoCardiogram; all shows NORMAL
10-19-15 --- Drains taken out
10-07-15 --- Bi-lateral (double mastectomy) and 2 drains put in. Left breast 2.1cm tumor (IDC) and 5 sentinel lymph nodes taken (biopsy for lymph nodes are negative)
10-01-15 --- Results from the CA-125 are negative - there are fibroids and a polyp on the lining near the cervix. We did not biopsy, and will be doing a total hysterectomy in April, 2016
09-30-15 --- Ultrasound on uterus and blood test for CA-125
09-22-15 --- Met with Plastic Surgeon on all options for reconstruction; chose to NOT do any reconstructive surgery at this time
09-18-15 --- Test results came in positive for BRCA2+; also met with surgeon as we made the decision to do a bi-lateral mastectomy; he showed me the MRI read-out 2.4cm mass
09-10-15 --- Met with Genetics Counselor to do the test for BRCA
09-04-15 --- Diagnosed DCIS and IDC; left breast; 4 o'clock from nipple
09-02-15 --- Left breast tumor biopsied
08-26-15 --- Ultrasound confirmed lump in left breast
08-19-15 --- Met with Doctor that reads the mammograms to understand what she saw in the 3D mammogram as it showed NORMAL and I was feeling a lump; she ordered an ultrasound
07-25-15 --- Felt a small lump
06-03-15 --- (AGE 53) 3D Mammogram; result showed NORMAL (Post Menopause and I take NO medications)
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Old 11-11-2015, 05:22 PM   #7
JennSmith58
Member
 
Join Date: Apr 2015
Posts: 10
Re: BRCA2+ and HER2+

Perjeta was only recently approved for early stage breast cancer, and I received it in part because I participated in a clinical trial. I will continue to receive it with my Herceptin through the end of April.

I had a complete hysterectomy 9 years ago, in part because my first cancer was highly estrogen positive. I need to thank my gyn that recommended the hyst, as she was the only one on my medical team that recommended it. With my BRCA2 status confirmed this summer, I can't help but think she may have saved my life. I have absolutely no regrets about having had the hysterectomy.

I hope you are tolerating chemo reasonable well. Not a picnic at all, but you will get through it. Let me know if you have any questions about the hysterectomy.
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Old 11-11-2015, 06:41 PM   #8
TripletMom
Junior Member
 
Join Date: Oct 2015
Posts: 3
Re: BRCA2+ and HER2+

Hi Jenn -- yes, so glad you had the hysterectomy then.... did I also ask you if you had any lymph nodes affected? Chemo is ok and am trying to journal.... its the neulasta that really kicked my butt. How long did it take you to recover from the hysterectomy? thanks again for responding.... very helpful! Joan
__________________
TripletMom (Joan)
3-24-16 -- Due to BRCA2+, I had my total hysterectomy performed via DaVinci and laparoscopically
1-27-16 --- LAST Chemo Treatment; TCH; will continue with the Herceptin until Nov. 4, 2016
11-06-15 --- Neulasta dispensed at 7 p.m. (I do this 27 hours after each treatment) - made me tired and achy
11-05-15 --- FIRST Chemo treatment; 5 hours; TCH; nurse gave me the On-Body Neulasta which was to be dispersed on the following day 25 hours later
11-04-15 --- Portacath inserted; had issues with finding a vein for anesthesia; 5 trys. While in surgery for the port, the surgeon could not insert the portacath on the right or the left side so went straight to the jugular on the left side - very uncomfortable.
10-28-15 --- EchoCardiogram; all shows NORMAL
10-19-15 --- Drains taken out
10-07-15 --- Bi-lateral (double mastectomy) and 2 drains put in. Left breast 2.1cm tumor (IDC) and 5 sentinel lymph nodes taken (biopsy for lymph nodes are negative)
10-01-15 --- Results from the CA-125 are negative - there are fibroids and a polyp on the lining near the cervix. We did not biopsy, and will be doing a total hysterectomy in April, 2016
09-30-15 --- Ultrasound on uterus and blood test for CA-125
09-22-15 --- Met with Plastic Surgeon on all options for reconstruction; chose to NOT do any reconstructive surgery at this time
09-18-15 --- Test results came in positive for BRCA2+; also met with surgeon as we made the decision to do a bi-lateral mastectomy; he showed me the MRI read-out 2.4cm mass
09-10-15 --- Met with Genetics Counselor to do the test for BRCA
09-04-15 --- Diagnosed DCIS and IDC; left breast; 4 o'clock from nipple
09-02-15 --- Left breast tumor biopsied
08-26-15 --- Ultrasound confirmed lump in left breast
08-19-15 --- Met with Doctor that reads the mammograms to understand what she saw in the 3D mammogram as it showed NORMAL and I was feeling a lump; she ordered an ultrasound
07-25-15 --- Felt a small lump
06-03-15 --- (AGE 53) 3D Mammogram; result showed NORMAL (Post Menopause and I take NO medications)
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Old 11-11-2015, 08:18 PM   #9
Pat94
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Join Date: Jul 2013
Posts: 100
Re: BRCA2+ and HER2+

Remember to take Claritin or Allegra for the neulasta - it does make a tremendous difference. Take for at least 3 days in advance.
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