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Old 09-24-2011, 08:07 AM   #1
Midwest Alice
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Midwest Alice checking in

Hi every one,

It's been a long time.. just been reading and keeping up with every one.

I have had both my hips replaced and getting around really well. Moved into a condo., transfered to a new job.. enjoying life as we know it.

Now I am freeking a little.

My up date is not all that good.


I am having a biopsy on Monday
for two spots on my tonsil. Other thing are making me feel this is a secondary cancer. Weight loss, taste change, pain, I first saw the spot in june and we have been watching it... didn't look or feel like cancer. Now there are two. The second is not soft.

I am planning my fight if needed. I am close to Vanderbilt and St. Louis. My brother is in St Louis so that is the way I am leaning. Any one have experience at those locations?

Do we know anyone who has gone to Cancer Centers of America.?

Any of us with a secondary cancer that isn't BC?

Will keep you up dated.

Thanks ALice
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 09-24-2011, 11:25 AM   #2
ElaineM
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Wink Re: Midwest Alice checking in

Thanks for checking in Alice. It is good to hear from you again.
Wow !! A double hip replacement. You are a stronger woman than I am. I had one hip replaced in 2004 after an accident. I am glad you have been moving around well. Good for you !!!!!!!!
I am sorry to hear about your latest problem. I hope the biopsy results are negative.
I had a basel cell carcinoma removed about 18 months ago. Various kinds of skin cancers run in both sides of my family, so it was only a matter of time before I got one. It healed well and I haven't had any problems with tha area.
I don't know anything about hospitals in the midwest, but hopefully someone else will be able to help you with your request.
In the meantime take good care of yourself and keep us updated.
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12 years and counting
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Old 09-24-2011, 04:14 PM   #3
chrisy
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Re: Midwest Alice checking in

Hi Alice,
Well, easy to say (and of course I don't always follow my own advice on this!) but don't panic until you get some facts. Good to begin thinking about next steps, if just to get your mind around the idea, but let's hope you don't need to. You really don't have enough information to make any plans, not knowing if this is a recurrence, or something new, or something that will turn out to be nothing. But I'm with Elaine - you are one strong woman and you will be ready.

Please keep us posted
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Chris in Scotts Valley
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.
3/13 TACE procedure
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Old 09-28-2011, 06:42 AM   #4
Sheila
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Re: Midwest Alice checking in

Alice....great to hear from you...wait till you get the biopsy results, butnif needed, what about Indianapolis ....I know they have a great cancer center at the university of Indiana...I think it's called Indiana University....as far as CTCA, I known of 4 people who went there for various cancers.....none faired well....butnit has to be a personal choice, and I think the closest to you would be Zion, IL

There are also a lot of specialists in Chicago...thinking positive thoughts that you won't need any more than antibiotics to get rid of this...I was gonna say a tonsillectomy, but they are a pain on an adult!

Sending a big hug
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 09-29-2011, 01:46 AM   #5
Trish
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Re: Midwest Alice checking in

I like your "Hope for the best, plan for the worst" approach. I'm hoping it's tonsilitis but am glad there are people to give you advice re treatment centres if necessary. Very much hoping their words of wisdom won't be necessary though.
Trish
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Old 09-29-2011, 01:01 PM   #6
schoolteacher
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Re: Midwest Alice checking in

Glad to hear from you, Alice. Hope to hear again about your results.

Amelia
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Old 10-04-2011, 11:47 AM   #7
Jackie07
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Re: Midwest Alice checking in

Alice,

I'd had brain tumor surgeries before my BC diagnosis. The neurosurgeon had told me back then that "people who have one type of cancer are more likely (than others) to have another type of cancer." After 2nd Brother was diagnosed/treated for colon cancer, I found a cluster called HNPCC that seems to explain our family cancer history (Mother has had Non-Hodekins Lymphoma.)

One time when I was feeling discomfort in my right lower abdomin area and the doctor sent me to ultrasound after CT-scan - I was so very sure that I'd had liver mets. It turned out to be harmless 'hepatic hemangioma'. So hang in there - don't scare yourself too much.

You are in our thoughts and prayers.
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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
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13

"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; 10-04-2011 at 11:51 AM..
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Old 10-05-2011, 03:00 PM   #8
Midwest Alice
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Re: Midwest Alice checking in

Hi, the biopsy is back and no cancer. What a great relief. Normal tissue.
I am now on a strong antibiotic because of my ear pain and throat pain. We think the pain is from an infection
I had my 3 month visit with my onc this week. He said I’m fine and I will see him in January. If the neck thing doesn’t resolve its self then call and we will look at scans as needed.
The nurse called today with my blood test result. He did a cl27-39???? (Cancer cell count in blood) Mine is 23 now, in June it was 16, 4 months before that it was 11. I understand that fewer than 32 are normal. So I feel good and so so about it all. I guess scans to early will miss anything that is very small.
So I hope this pain is cleared up with the antibiotic. I am going to start looking more into what I’m eating and drinking. And get my body healthy and ready if called back into a fight.
Thank you all … it is so wonderful to have someone to talk to that understands…… Praying for health and healing for all of us. Alice
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 10-05-2011, 09:35 PM   #9
chrisy
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Re: Midwest Alice checking in

Good news alice! Thanks for the update
__________________
Chris in Scotts Valley
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.
3/13 TACE procedure
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Old 10-06-2011, 01:21 AM   #10
Trish
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Re: Midwest Alice checking in

Fantastic news Alice-exactly what I wanted to hear. Thanks for letting us know.
Trish
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Old 10-06-2011, 06:38 PM   #11
LoriG
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Re: Midwest Alice checking in

Hi Alice,

I haven't been to this site in a long time, but tonight I felt compelled to take a peek. I have no idea why, but I am so glad to read your good news. Congrats!!

Lori
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Lori, age 33
*IBC (ER+,PR-,Her2+) on right diagnosed 8/09 with metastatic lymph node left axilla (Er-,PR-,Her2+) vs possible bilateral breast cancer
*A/C x4
*Taxol x4 with weekly herceptin
*Breast MRI 12/09- no improvement
*PET scan 12/09- no evidence of mets
*Tykerb/Xeloda 12/09
*Bilateral MRM 4/10
*Twice daily rads to both chest walls and both axillas 5/10-6/10
*9/10 PET/CT- NED
*Tykerb/Xeloda until 12/10
*Tykerb and Tamoxifen 12/10-current. Bye bye Xeloda
*2/11- malignant pleural effusions bilaterally (likely lymphangitic lung mets) and skin mets
Herceptin and Ixempra
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Old 10-29-2011, 12:36 AM   #12
Jackie07
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Re: Midwest Alice checking in

Fantastic! So happy for you. (My Internet connection has just been 'fixed' - got a new USB.)
__________________
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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
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13

"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; 11-01-2011 at 12:49 PM..
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Old 08-19-2012, 01:56 PM   #13
Midwest Alice
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Re: Midwest Alice checking in

After 4 years I am doing reconstruction. It is going well. I am using coconut oil on my skin as we try to expand it. I go every two week and will have surgery in December to place the implants and do the finial shaping. It's kind of exciting.
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 08-19-2012, 06:16 PM   #14
Laurel
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Re: Midwest Alice checking in

Glad to hear your good news and sure hope you are feeling tiptop in a matter of days with that anti-biotic. Good luck with your reconstruction. I have always been happy I chose to have new girls. They are a bit odd, but kinda fit with the rest of me!
__________________


Smile On!
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
6 Years NED
I think I just might hang around awhile....

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Old 08-21-2012, 03:15 AM   #15
Ellie F
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Re: Midwest Alice checking in

Hi Alice
Lovely to hear from you. Are you having reconstruction just using expanders or will they also make a flap? I thought that if you have had a normal mastectomy there wasn't enough skin left to reconstruct without using muscle from the back or tummy?
Love Ellie
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Old 08-30-2012, 06:08 PM   #16
Sandra in GA
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Re: Midwest Alice checking in

Hi Alice,
As a word of encouragement, I am glad I had a double mastectony and reconstruction. As Laural said, they are not like the real ones, but they are better than none!
Sandra
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Diagnosed: 7/25/08 ~ age 63, no family history
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
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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