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Old 07-15-2009, 04:50 PM   #1
Brenda_D
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Her2 and BRCA

When I asked my onc about BRCA testing he told me the kind of cancer I have is not hereditary. I assumed he meant her2 positive.
I have 2 sisters and when they go for mammos they list me as a first degree relative with BC.
Now both sisters are having to have breast MRI's because of family history.
So have any of you been told anything about BRCA in relation to her2+ BC?

I'm stumped as to why my onc would say one thing and my sister's doctors would insist on costly MRI's due to family history. It doesn't mesh.
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12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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Old 07-15-2009, 05:06 PM   #2
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I was 46 years old and pre-meno when I was dx with Stage 1 bc. I was ER-PR- and Her2+++, my mother had bc with mets and died at age 65. My grandmother (maternal) had bc when she was in her sixty's. I had just found out recently that my maternal grandfather had died from bc. (secret in the family).
I was tested and am positive for BRCA1.
My 1/2 sister (same mother) tested negative.
So basically it doesn't matter about the HER status but I was told young women (pre-meno) is to be considered as having the gene.
Prior to my genetic testing my onc was treating me as I was BRCA positive. I have yearly mamos and yearly MRIs.
Hope this helps.
There is also a web site called the Force which has a lot of info regarding genetics and testing.
Good Luck
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Old 07-15-2009, 05:12 PM   #3
Becky
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Although it happens, it is rare for Her2+ women to be BRCA positive.
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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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Old 07-15-2009, 05:55 PM   #4
caya
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Becky is right. I was tested because I am Ashkenazi Jewish (Eastern European background) and I was under 50 at diagnosis, although no close family members had BC. My onc. assured me I would be BRCA negative - he confirmed that it is rare to be Her2+ and BRCA+. I know there are a few members here who are BRCA+.

I did test negative for BRCA 1 and 2.

all the best
caya
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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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Old 07-15-2009, 07:43 PM   #5
Cannon
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Not all genetic connections are BRCA - many people have family history of breast cancer without BRCA.

There are assumed to be other genes involved, not yet identified.

Your sister's doctors are right to be careful - that's what my sister's doctor does too.

I had thyroid cancer, a year later my sister was diagnosed with same -- there is no known gene for that either.

Rebecca
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 07-15-2009, 08:15 PM   #6
Sherryg683
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My Oncologist also told me that Her2 was not herditary and that said something about Jewish decent is what they usually see it in...sherry
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 07-16-2009, 01:00 AM   #7
harrie
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I am BRCA2 positive as well as HER2 + for my 2006 breast cancer.

BTW, my mother and her sister (both deceased) had breast canc. I have 2 sisters. I am the only one that has had bc. Before I was tested, my sisters went in to be tested because they were wondering if they had the gene. My geneticist told them that I was the one to be tested since I had the history of bc. I was tested, came out + for BRCA2. My sisters were tested afterwards and came out (-). My daughter was tested and is also (-).

By the way, I don't believe my prior incidences with DCIS was tested for the HER2.
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*** 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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Old 07-16-2009, 08:59 AM   #8
suzan w
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most of the women in my history died early from a variety of things, none cancer. I just requested the BRCA 1 +2 because I want to know! PERIOD! I believe it is my right and my duty to myself and my future relatives to find out as much as I can about this dreadful disease. My insurance company approved the test and I had to jump through hoops with my onc. to get it! She kept saying, "you prob don't have the gene, don't see a need for this, blah blah" Well, bottom line, I want to know!!! Still waiting for the results!
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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 07-16-2009, 10:28 AM   #9
Brenda_D
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I had wanted the test for my sisters' sakes, and did ask about 2 years ago. My onc told me that about my type not being hereditary, and also said "your insurance won't pay for it". I kind of felt like I was being brushed off a little, but I figured he told me the truth about the hereditary part.
If I remember, I'll ask my new onc when I see her again.
Thanks everyone, for the input.
I just kind of feel bad for my sisters now having to get expensive tests because of me. Also that they have to travel to another town to get them because they don't do breast MRI's here. I told them do what you think is best, but better to know there's nothing there, than to hope they didn't miss anything on the mammo.
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Old 07-16-2009, 11:46 AM   #10
harrie
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Brenda, did your mother or father have cancer? How about their siblings?

I had a very strong family history. My mother had bc and died at 69 yrs old. Her sister (my aunt) had bc and died even younger. Their dad (my grandfather) had pancreatic cancer. Having the BRCA2 increases chances of getting pancreatic, colon, and melenoma along with bc.

If your parents have not had a history of any of these cancers, your chances and your sister's chances are prob very minimal of carrying the gene despite the fact that you had bc and being HER2 to me is insignificant.
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*** 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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Old 07-17-2009, 06:29 AM   #11
Brenda_D
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My parents did not have cancer. My Mom's 2 sisters had cancer, breast and lung, and her brother had bladder cancer. All had cancer late in life (in their 70's) and all died from their cancers.
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Old 07-24-2009, 12:48 AM   #12
harrie
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Well Brenda, now you know, your onco is off. Your type (HER2) does not exclude you from having the BRCA gene.
Keep in mind, you do not have to go through your onco to be tested.
I went on my own to a womens and childrens medical center that had a geneticist. She was very informative, counselled me and told me it WOULD be covered by my insurance.
I think you have plenty enough indications that the geneticist could easily submit to insurance that you have a strong family history.
Forget what your onco said. Find your own geneticist and talk to her directly and see what SHE says. I think you will be surprised.
If you don't know of a geneticist, I am sure with some research you could easily find one. If nothing else, you can probably find a person or info at FORCE to locate a geneticist to be tested.
It makes way more sense for you to be tested rather then your sisters.
__________________
*** 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

Last edited by harrie; 07-24-2009 at 12:50 AM..
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Old 07-28-2009, 02:37 PM   #13
suzan w
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PS see my new thread...I was also told that Her2 breast cancer would not be positive for BRCA 1 2, but today got the test results...POSITIVE! My philosophy...don't take no for an answer, If I think it might be a problem, then I deserve an answer!!! XO Suzan
__________________
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 07-28-2009, 03:07 PM   #14
Linda
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Brca

I'm another that was BRCA tested because of Jewish descent. I was also negative for BRCA 1 and 2, even though both of my grandmothers had bc, and 2 uncles had colon cancer, which is related. There are probably other genetic factors that they don't know how to test yet.
Linda
her2 pos, er/pr neg, stage 3a
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Old 10-11-2009, 09:46 PM   #15
Jackie07
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Re: Her2 and BRCA

Just private messaged Marcia, but I thought it could be posted here also.

I had requested for the BRCA gene test because of the information I had received from this website. My 2nd Brother (10 years my senior) is currently undergoing chemo for colon cancer (stage II/III) and my Mother had undergone chemo treatment for non-Hodgekins lymphoma 11 years ago (she's 86 right now.)

I've just e-mailed my other 4 siblings (I am the baby) and asked them to go get a colonoscopy 'right now'. BRCA1 or not, our family is clearly at high risk of cancer.

http://ww5.komen.org/ContentNoSidebar.aspx?id=5930
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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

Last edited by Jackie07; 10-11-2009 at 10:07 PM..
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Old 10-11-2009, 09:52 PM   #16
Soccermom
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Re: Her2 and BRCA

Her2 and BRCA are two distinctively different entities...
Her2 is a protein given off by ones cancer cell in excessive amounts..
A BRCA mutation is damage to one or more of the "tumour suppressor genes" (part of our DNA) hence hereditary...it most certainly IS possible to be BRCA+ and be Her2 neu+

Jackie I will keep my fingers crossed for a NEGATIVE BRCA test!
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Old 10-11-2009, 10:05 PM   #17
Jackie07
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Re: Her2 and BRCA

Thanks for the clarification, Marcia.

Myriad had offered to test my family members free of charge when the report of my BRCA1 'variant of unknown significance' result was given to me. But my siblings all are living overseas, so I can only remind them to get colonoscopy and other cancer prevention measures.
__________________
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

Last edited by Jackie07; 10-11-2009 at 10:25 PM..
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