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Old 08-19-2009, 08:56 AM   #1
Colleens_Husband
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Colleen's Last Herceptin

Dear Friends:

I just wanted to share a few thoughts the day after Colleen's last Herceptin infusion. She is officially N.E.D. with a prognosis of a long and healthy life. I would say she kicked cancer's fat butt, but taunting the cancer weevils is bad karma, so I won't even bring that subject up.

Looking back on it all the most interesting feeling I have on the cancer experience was that it seems like an easier journey in the rear-view mirror. There were some pretty dark days but they passed quickly. Going into treatment, in contrast, it seemed like the treatment would be an unending and difficult journey.

The only thing she has left to endure is removal of the port and a lifetime of heightened vigilance. Or at least I hope so. The nagging doubt is a residual that I hope will ebb with time. Getting rid of the port is going to be a bigger milestone for me. I hate that thing.

When Colleen was in surgery to have her lymph nodes removed, the surgeon found that all eighteen of the lymph nodes were swollen. Because of that, he installed a double port for end of life treatment, assuming that she was surely advanced Stage 4 cancer. It turned out that she had an infection because of the initial needle biopsy which caused the swelling and she only had 3 lymph nodes with cancer in them.

After the surgery, the surgeon took me into a private room and told me that Colleen had a gravely serious cancer problem and that getting her affairs in order may be a smart thing to do while she was still able to help me. That two weeks between the surgery and the next appointment with the surgeon were absolutely awful. I didn't tell Colleen about the conversation with the surgeon because he said there could be other reasons the lymph nodes were swollen, but it looked real bad.

In the end, Colleen said that the whole experience, although frightening and at times painful, was a growth experience which she wouldn't trade, although she would never want to go through this again.

I also think Colleen and I are closer than ever. We have always been great friends and soulmates, but somehow we cherish each other just a little bit more.

Anyways, enough of the self-indulgent mushy stuff. Colleen feels that she is now at an important milestone and we will celebrate that milestone, but for me, it isn't over till she gets rid of that damn port.

Lee
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 08-19-2009, 10:39 AM   #2
Savta
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Re: Colleen's Last Herceptin

Hi, Lee,

First congratulations on getting past the Herceptin. It's a friend that brought us comfort while we were in its company--and, yeah, a little frightening to say good-bye. The period of vigilance is hard to get used to--but as each three month check up finds us still NED we get used to the idea, that we just may beat this thing.
One thing I said when I first got sick was, "Even with bad luck, you need luck"--and I think that the fact that the two of you were able to see the positive side of facing this trial together is that "luck".
I know that my husband and I became even closer than we thought possible. We've been together 42 years--and facing the big C made every day even more precious.
I'm praying we have no more "trials" to bring us close, but I do know that I have who to rely on for whatever comes.
I am sure that Colleen does too.
All the best to the both of you--and may you to continue to enjoy each and every day.
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Old 08-19-2009, 10:50 AM   #3
tricia keegan
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Re: Colleen's Last Herceptin

Hi Lee, congrats to Colleen too on getting through to the final herceptin. I know my own first few months after were filled with often dark thoughts and concerns waiting for the other shoe to drop. Thankfully, it has'nt so far and I can say for sure, the confidence grows with each month that passes.
I'm always amazed too that although the whole treatement process was a nightmare at that time, I forget so many details of it now...which can only be a good thing
It's made me realize how resiliant we really are!
My best to you both as you go forward and I hope herceptin has worked it's wonders for Colleen as it has for so many
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
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Old 08-19-2009, 11:13 AM   #4
ElaineM
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Wink Re: Colleen's Last Herceptin

I am very happy for you. Congratulations !!!!!!!! A long, healthy and cancer free life to you !!
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Old 08-19-2009, 11:26 AM   #5
ammebarb
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Re: Colleen's Last Herceptin

Hi Lee. Ending treatment is such a time of mixed feelings, isn't it? There is the relief and joy that a physically difficult time is finished, all mixed in with a bit of apprehension about stopping "active battle". There is a new appreciation and awareness of living and of loving along with a new understanding of mortality. It took me many years to see any positive upshot from my cancer experience, but eventually I did. And, like Colleen, I don't want to do it again!

Hoping she can soon be rid of the "damn port" and then begin to look forward to a very loooooong, healthy life! My best to both of you.

Barb A.
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Old 08-19-2009, 11:58 AM   #6
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Re: Colleen's Last Herceptin

Lee and Coleen,

Congratulations on the finishing of Herceptin and the port removal.

Amelia
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Old 08-19-2009, 02:48 PM   #7
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Re: Colleen's Last Herceptin

Congratulations to Colleen and the end of her Herceptin treatments. May you both enjoy the results!! XO Suzan
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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 08-19-2009, 04:45 PM   #8
chrisy
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Re: Colleen's Last Herceptin

Lee,

Good observations. This is helpful perspective for others - especially the "rear view" being easier part.

Here's to many more years of it being in the rear view mirror...but unlike driving a moving vehicle, I hope you'll find it's not necessary to check it constantly in the future!
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
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Old 08-19-2009, 05:27 PM   #9
BonnieR
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Re: Colleen's Last Herceptin

Lee, what wonderful news! You can make a major update to the "this happened to Colleen" list!!!
I know you have all earned a break from Cancerland but I hope you will keep visiting the board. You bring wisdom and a unique perspective to the site.
Keep the faith!
Best, Bonnie
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May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
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Old 08-19-2009, 05:27 PM   #10
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Re: Colleen's Last Herceptin

Congratulations, Lee and Colleen. I didn't realize we were both at such similar moments. I just had my last Herceptin and will have my port removed September 11th! I feel the SAME way. Things feel a whole lot better now than when this crap started. Even though I had a horrible day at work today, at least I'm able to work now, and getting the port pulled out is going to be so cathartic! Although I'm glad I had it for the purpose it fulfilled, it makes me feel like a robot or something. In fact, the anesthesiologist told me that when I was high on gas and the surgeon was installing it, I said to them, "I feel like my husband's motorcycle!" My husband will not let me forget that I said that.
Anyway, cheers to us for getting rid of our spare parts.
Celeste
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Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.

"Well being I won
and wisdom too,
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from a word to a word
I was led to a word
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Old 08-19-2009, 06:41 PM   #11
Mary Jo
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Re: Colleen's Last Herceptin

Hi Lee,

Thanks for sharing and getting all "mushy" with us. Us girls love that kind of thing! Hehe!

On a more serious note now.............I am so happy for you guys. GIDDY with happiness, ESPECIALLY after reading the part about the swollen lymph nodes. OH MY GOSH ...... how horrible that time had to be for you. I can only imagine.

Give Colleen a big ole hug from me, would ya? Then tell her to give you a big ole hug from me through her to you. Ummmm....well, something like that.

Hugs all around.....

Mary Jo

P.S. Thanking God that this part of your journey has ended AND that all is well. Ahhhh!
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
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17 Years NED

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Old 08-19-2009, 08:05 PM   #12
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Re: Colleen's Last Herceptin

YEAH A BIG CONGRATS to Colleen on last Herceptin. I know you both are just thrilled to have this all done and over with.
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Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
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Grade 3
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Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
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Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
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Old 08-19-2009, 08:58 PM   #13
'lizbeth
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Re: Colleen's Last Herceptin

WooHoo! Congrats to Colleen.
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Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
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Old 08-19-2009, 09:55 PM   #14
vickie h
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Re: Colleen's Last Herceptin

Lee,
Thank you for sharing these deep and enduring feelings with us. Today is Cap and my 33rd anniversary so your post held even greater meaning for us. Please give Colleen our love and congratulations tonight. You have both been an inspiration to all of us. Great, great news...Now on with the living!
Love,
Vickie
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7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
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9/ 06 Navelbine/herceptin
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3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 08-21-2009, 10:35 AM   #15
Joan M
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Re: Colleen's Last Herceptin

Lee,

Congratulations to Colleen on finishing Herceptin.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 08-21-2009, 12:49 PM   #16
Sandra in GA
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Re: Colleen's Last Herceptin

That is one milestone I am looking forward to passing. Wish the two of you much happiness.

Sandra
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Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
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Old 08-21-2009, 07:28 PM   #17
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Re: Colleen's Last Herceptin

Congrats to Colleen for her last Herceptin, and to Lee for being the wonderful support throughout the entire journey.

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

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Dignosed 10/16/06, age 48 , premenopausal
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Old 08-21-2009, 07:37 PM   #18
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Re: Colleen's Last Herceptin

Congratulations! Colleen and Lee.

Does Colleen know you are on this Board supporting her?

Does she know that you sometimes sign your name as 'Evil Lee'?
(or someone call you by that name?

You, Bill, and Joe all deserve a best supporting spouse medal...
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Old 08-22-2009, 08:34 AM   #19
Bill
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Re: Colleen's Last Herceptin

Congratulations to you and Colleen, Lee! Thanks for helping all of us here, and thanks for being you. Good luck with the port removal.
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Old 08-22-2009, 12:53 PM   #20
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Re: Colleen's Last Herceptin

Congratulations to Colleen (and you) on reaching this milestone. You have been been a tremendous support to Colleen and all of us here. I hope you continue to visit and contribute - we wouldn't be the same without you.
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Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
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Aug 2008 - Feb 2012 Zometa every 6 months
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