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Topic: Long term survivor examples.

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Dec 16, 2013 11:46PM - edited Dec 16, 2013 11:53PM by BanR

BanR wrote:

Just an idea came across my mind.

Can we share stories and examples of long term triple negative survivors. They dont participate in such forums. So its only by word of mouth that we get to hear about them.

But I also see few of them in this website, who themselves are long term survivors. I feel so happy to see how they have moved on so beautifully with their lives.

I know two such women. Both close to 10 years out of diagnosis. Both without any family history of cancer.

One diagnosed in 2003 and another in 2004. Both were in their late 30s then. Those days they were not aware that they were triple negative. But they say that tamoxifilin didnot work on them, they had only surgery chemo and radiation. So in all probability they were tnbc patients.

One was stage 1, another stage 2b. One had 6 rounds FEC and another had 6 rounds TAC. They both have yearly check ups now and are leading completely normal lives.

I also know another woman, who got diagnosed 5 years ago but stage 3, body didnot respond to tamoxifilin and had complete mastectomy. She had 6 rounds TAc, plus rads. Living a normal life...and put the entire episode behind her.

If you also know someone having similar treatment and diagnosis years ago and is still living ...please share. It will be very insipiring.

Love u all!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Jun 27, 2016 01:45PM BilateralBeauties wrote:

A friend of mine is celebrating 20 years this year. 27 at diagnosis. Three babies after. They threw the book at her at the time. Stage 1 at diagnosis.

Dx 8/23/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/7/2011 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Chemotherapy 10/13/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2012 Breast Hormonal Therapy 3/9/2012
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Jul 13, 2016 08:56PM pas wrote:

Just celebrated 11 years cancer free! All you TNBC girls currently battling, hang in there and treat yourself good! Rest when you want to, cry when you want to, do and act anyway YOU want! Only you know how you feel. I learned to tune out the advice coming from every direction and listen to the doctors I trusted and most of all, stopped trying to treat myself on the medical websites!

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Jul 24, 2016 01:40AM Kathseward wrote:

just been diagnosed with a 9mm triple neg. had a wide excision two weeks ago tumour margins good no lymph or auxilla involvement. Oncologist says a 90% chance of no recurrence but so very scared! I should be thanking God everyday that I found it now but I can't get around that fear! Chemo in two weeks and u amazing women have given me hope! I want to live my life to the fullest but the fear is paralysing me! How do I get around it

Dx 7/6/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 7/7/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2016 AC + T (Taxol) Radiation Therapy 1/29/2017 Whole-breast: Breast, Chest wall
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Jul 24, 2016 02:16AM - edited Jul 24, 2016 02:46AM by Kathseward

This Post was deleted by Kathseward.
Dx 7/6/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 7/7/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2016 AC + T (Taxol) Radiation Therapy 1/29/2017 Whole-breast: Breast, Chest wall
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Jul 24, 2016 02:50AM Kathseward wrote:

you are amazing! Just newly diagnosed waiting on chemo and terrified. Need to focus on90% non recurrence rate but can't get round all of the negative stuff out there. So scare

Dx 7/6/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 7/7/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2016 AC + T (Taxol) Radiation Therapy 1/29/2017 Whole-breast: Breast, Chest wall
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Jul 24, 2016 02:55AM Kathseward wrote:

thanks you give me hope

Dx 7/6/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 7/7/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2016 AC + T (Taxol) Radiation Therapy 1/29/2017 Whole-breast: Breast, Chest wall
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Jul 24, 2016 08:10AM Kathseward wrote:

just diagnosed prognosis good but terrified! How do u get past that and live ur life! So sad and fririghened. Chemo in two week

Dx 7/6/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 7/7/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2016 AC + T (Taxol) Radiation Therapy 1/29/2017 Whole-breast: Breast, Chest wall
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Aug 24, 2016 05:22PM BanR wrote:

Thanks Jojo..

Thanks for posting your story Kayrem!

I am targetting at least 20 years too!! :)

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy: Right Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Sep 1, 2016 01:59AM rosselle wrote:

bumping 😊

Dx 4/19/2016, IDC, Right, 4cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/2/2016 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery
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Sep 1, 2016 09:46AM KSteve wrote:

As we approach labor day weekend, I will be celebrating 6 years since diagnosis. In some ways, it seems like it was a lifetime ago. While I do remember the fear that gripped me 6 years ago, I am pleased to say that I remain healthy (in fact healthier then I ever have been). We travel a lot, and I truly enjoy my life. My sister, DH, DD and I will be walking in the Avon39 breast cancer walk in one week in Santa Barbara, CA. I'm looking forward to celebrating my own health with my family, as well as raising money for those who don't have the support that I did, as well as to fund research. We need a cure!! To those who are currently fighting, or recently finished active treatments, life does get better again. It just takes time. Hugs to all!

Kathy

Dx 9/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 3/15 nodes, ER-/PR-, HER2- Chemotherapy 9/20/2010 AC + T (Taxol) Surgery 1/7/2011 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/14/2011 Breast, Lymph nodes Surgery 5/31/2011 Reconstruction (left); Reconstruction (right) Surgery 12/5/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 1/22/2014 Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 4/3/2014 Reconstruction (left); Reconstruction (right)
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Sep 2, 2016 09:16PM - edited Sep 6, 2016 11:49PM by VLH

It's so wonderful to read about those with TNBC who are doing well, especially those at five years and beyond! ThumbsUp

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/10/2016 AC + T (Taxol) Radiation Therapy 9/5/2017 Whole-breast: Breast
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Sep 6, 2016 08:40PM - edited Sep 6, 2016 08:41PM by Redporchlady

Thanks Kathy for posting! All of the wonderful women who post here helped me to get thru my treatments and this month is my 2 year mark. I try to live each day as my second chance.

Dx 9/24/2014, IDC, Right, 5cm, Stage IIIA, Grade 3, 5/20 nodes, ER-/PR-, HER2- Chemotherapy 10/7/2014 AC Chemotherapy 12/3/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 4/7/2015 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Radiation Therapy 5/7/2015 Whole-breast: Breast, Lymph nodes
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Sep 6, 2016 09:12PM Cathytoo wrote:

Redporchlady...congratulations on reaching the two year mark. I hope I can post the same next year at this time. I hope you post again 10 years from now..,and then 20...

Dx 10/13/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 1/17/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 7, 2016 08:02PM Redporchlady wrote:

Thanks cathytoo and I look forward to your posts! Hugs and prayers to all.

Dx 9/24/2014, IDC, Right, 5cm, Stage IIIA, Grade 3, 5/20 nodes, ER-/PR-, HER2- Chemotherapy 10/7/2014 AC Chemotherapy 12/3/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 4/7/2015 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Radiation Therapy 5/7/2015 Whole-breast: Breast, Lymph nodes
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Nov 29, 2017 01:28PM Gorilla12 wrote:

I am 12 years cancer free. Diagnosed 7/05, stage 1, no nodes. Chemo and radiation. Thriving not just surviving. My 27 year old beautiful daughter just got married. I am celebrating almost 7 years married to the love of my life. Son in Marines doing well. We just relocated and I have a new job. Enjoying the empty nest with my hubby. I hope this inspires or helps even one person!

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Dec 14, 2017 02:34PM yellowdoglady wrote:

Congrats, Gorilla! I'm 9 years out and doing fine myself. Diagnosed 11/08, Stage IIB, four malignant nodes. Lumpectomy, chemo, and radiation, and the beast was well and truly killed.

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Jan 26, 2018 01:31PM Gamble wrote:

15 year Triple negative breast cancer survivor. was IDC stage 2B. modified radical mastectomy with 4 rounds of ACE chemo.  Now have new lump in opposite breast. had diagnostic mammogram and ultrasound yesterday nothing seen although radiologist could easily feel lump. seeing surgeon on Monday afternoon. My previous cancer was not seen on imaging either but figured with new technology I would have more info. Anyone else have this happen?

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Jan 26, 2018 04:13PM Char105 wrote:

I am so happy for this page. I have been so worried when I found out I was triple negative. Can't find anything online that is encouraging it seems. I'm going to talk to my MO this next fusion and ask about the BRCA testing.

Thanks again for starting this page. Nice to see positive for a change.

Dx 10/10/2017, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 11/9/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/9/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast
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Feb 15, 2018 06:26PM Sharrose wrote:

I am so happy to know about these TNBC pathat have stayed cancer free for so long! I finish my last Radiation treatment on Monday the 19 day of February 2018. I will be counting the years down as I have counted down the months of treatment since my diagnoses June 9, 2017. Thank you for all the encouraging news!

Dx 6/9/2017, IDC, Left, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- (FISH) Surgery 11/17/2017 Lumpectomy Chemotherapy AC + T (Taxol)
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Apr 9, 2018 06:51AM tibet1 wrote:

hi Gamler, did they find sth , hope is all ok?

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Oct 9, 2019 12:29PM simplelife4real wrote:

Hi All,

I just passed the six-year mark after triple negative breast cancer stage 2B. I had cancer remaining in my lymph nodes after neoadjuvant chemotherapy. Surgery and radiation seemed to do the trick. I have been in NED ever since. I just want to give hope to anyone else out there that is faced with a similar circumstance.Triple negative breast cancer is very scary, but it can be survived.




Dx 8/1/2013, IDC, 2cm, Stage IIB, Grade 3, 2/11 nodes, ER-/PR-, HER2- Chemotherapy 9/4/2013 Taxol (paclitaxel) Chemotherapy 12/2/2013 AC Surgery 2/12/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 3/31/2014 Breast, Lymph nodes
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Oct 23, 2019 09:17AM Kimm992 wrote:

A family friend who had triple negative BC just passed her 5 year cancer free date a couple of weeks ago! She's doing awesome!

Dx 10/14/2015, IDC, Right, 1cm, Grade 3, 0/3 nodes, ER-/PR-, HER2+ Chemotherapy 11/2/2015 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Targeted Therapy 1/5/2016 Herceptin (trastuzumab) Chemotherapy 1/6/2016 Taxotere (docetaxel) Surgery 3/24/2016 Mastectomy: Right Radiation Therapy 4/29/2016 Lymph nodes, Chest wall
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Oct 23, 2019 10:27AM KSteve wrote:

Thought I'd chime in too! I am 9+ years out now and doing great. Life is so good. Looking forward to retirement in a little over 2 years at 57 years old. When I was diagnosed at 44, I honestly didn't know if I would live to see that. Now DH and I are making all kinds of fun plans for our post-working lives (don't worry, we're doing lots of traveling and fun things now as well, just looking forward to not worrying about if I have enough vacation days for everything :)

Best of luck and many virtual hugs to all of those in their fight now and to those who have put it in their rear view mirror, like me!

Kathy

Dx 9/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 3/15 nodes, ER-/PR-, HER2- Chemotherapy 9/20/2010 AC + T (Taxol) Surgery 1/7/2011 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/14/2011 Breast, Lymph nodes Surgery 5/31/2011 Reconstruction (left); Reconstruction (right) Surgery 12/5/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 1/22/2014 Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 4/3/2014 Reconstruction (left); Reconstruction (right)
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Oct 24, 2019 07:41AM VL22 wrote:

Thank you ladies for the updates! Sometimes it is just what I need!

Love to read about success stories and great lives being lived. So happy for all of you.







Dx 5/5/2017, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/15/2017 Lumpectomy: Right; Lymph node removal: Sentinel Dx 6/23/2017, IDC, Right, 1cm, Stage IB, Grade 3, 1/2 nodes, ER-/PR-, HER2- Chemotherapy 8/10/2017 AC + T (Taxol) Radiation Therapy 1/11/2018 Whole-breast: Breast Hormonal Therapy 3/11/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 16, 2019 07:02PM - edited Nov 16, 2019 07:02PM by Fiercer

I am beginning to believe I am past my ordeal with my TNBC. There is never a day I don't feel blessed.

Dx 2/14/2013, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (DUAL) Chemotherapy 3/13/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/6/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/14/2013 Breast, Lymph nodes
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Nov 16, 2019 09:58PM SJSmith52 wrote:

I am not actually a LONG term survivor as I was diagnosed with triple negative breast cancer in May 2017. I am 67 and had no family history of breast cancer. It had not spread to the lymph nodes so I had surgery for "tumor" removal and then just radiation. I did have to have a second surgery a week later bc my surgeon said the margins were not clear enough. The cancer was initially found on my mammogram. I could not feel any lump. I do not know of anyone who lives in this town who has the same experience as myself so it is awesome to see a post from someone who I can "talk" to. I don't think about it every day or anything but I do have a fear of recurrence bc the surgeon told me that TN was the least likely to occur, most difficult to treat and the most likely to recur . I see my oncologist every 6 months and I think I have a mammogram on both breasts once/year and that is all. My surgeon retired shortly after my surgery so I don't have him to ask questions. I am fearful that the cancer will show up in the other breast. I am not sure why he did not recommend chemo - although of course I am glad he didn't. Is there anything I should be doing besides keeping my oncology appts. and doing manual self exams?

I read in one post about the BRACA test and I do have dense breast but what is the determination for that test - I thought it was associated with genetic links? Thanks for any support you can offer. As I said above I do not know of any short OR long term survivors who have been diagnosed with the type cancer I had.

SSmith

Dx 5/27/2017, DCIS, Right, <1cm, Stage 0, Grade 1, 0/2 nodes, ER-/PR-, HER2- Radiation Therapy 7/15/2017 3DCRT: Breast
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Nov 20, 2019 02:18AM yellowdoglady wrote:

I'm still fine, eleven years out. Keep going, all of you.

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Nov 20, 2019 03:30PM VLH wrote:

SJSmith52, you might want to pose your questions on one of the other Triple Negative threads for more input, but, yes, the BRCA tests relate to genetics. Since your cancer was small, didn't invade the milk ducts (invasive ductal carcinoma / IDC), your nodes were negative, you are in your 60s and you have no family history of cancer, a BRCA test would not be routinely recommended. Similarly, your doctor considered the risks of chemo vs. the modest reduction in risk given your cancer characteristics. I have mammograms every six months, but had very aggressive triple negative IDC with a tumor over 2 centimeters in size. There typically isn't much done beyond mammograms and physical exams. (My oncologist also does blood tests.) I know this watchful waiting is difficult, but encourage you to share your concerns with your oncologist.

It's wonderful to see the long-term survivors checking in! At only 3 1/2 years since diagnosis, I don't consider myself long-term yet, but I am encouraged by reading everyone's notes.

Lyn.

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/10/2016 AC + T (Taxol) Radiation Therapy 9/5/2017 Whole-breast: Breast
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Nov 21, 2019 07:59AM SJSmith52 wrote:

VLH, thank you for taking the time to respond to my concerns. No two people are exactly alike in their diagnosis, treatment, location, etc. But I appreciate you responding and giving me encouragement for my specific case. I am very interested in continuing this website and will try to check it frequently. I think it is important for people at all stages of the TN walk. I sometimes still find it difficult to believe it happened to me. I do not dwell on it and live my life with joy. I do have one more question that I hope others will read. This may not have anything to do with the cancer treatment which was 2 1/2 years ago but since that time it seems like I CANNOT stay well. Nothing serious (life-threatening) but life style threatening. Upper respiratory infections, pneumonia twice, strep throat, viruses, etc. I have 4 grandchildren and have missed a baptism, birthdays, halloween b/c of being sick. I have always exercised and eaten right. None of that has changed. My blood work revealed nothing out of the ordinary. Has anyone else experienced this? It has changed my life more than cancer. I have missed so many things because of being sick. My PCP does not seem to think anything of it except that I am 2 years older. I have an appt. with a pulmonologist hoping for some answers. I would REALLY appreciate any help you could offer.

Dx 5/27/2017, DCIS, Right, <1cm, Stage 0, Grade 1, 0/2 nodes, ER-/PR-, HER2- Radiation Therapy 7/15/2017 3DCRT: Breast
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Nov 21, 2019 07:06PM VLH wrote:

I didn't notice a decline in immunity so no ideas on that, SJSmith52.

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/10/2016 AC + T (Taxol) Radiation Therapy 9/5/2017 Whole-breast: Breast

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