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Round 2, what now ???

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craig View Drop Down
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    Posted: Mar 20 2011 at 8:33am
Hi All,
Not sure how to start this,other than to say that I'm writing on behalf of my wife of almost 30 years.
She just turned 50 in 2009 and before the year was out....a week before Christmas actually....she was told she had Triple Negative Breast cancer.
What a present !!The gift that keeps on giving...or taking
Now,after 5 months of chemo, a double mastectomy,3 months of radiation,and about 6 months of supposed recuperation while following Dr's directions,my wife's bout with Triple Neg has reared it's ugly little head yet again.
She had been enduring achy joints and lack of energy for months,all  while her Dr was telling her that it is "normal" and is a result of the chemo treatments.
She had been going in for monthly check ups and  blood work,which always came back negative;so we accepted that as sufficient evidence.
However,in the last month or so,she started to experience escalating pain in her lower back and finally insisted that the Dr do something.
So he ordered a bone scan,which turned up something "abnormal" on her sacrum .
A follow up MRI was done later in the week,which indicated a 13mm "abnormality".
The tech said it "sucked up the dye",so they are reasonably sure it is cancer.
The Dr claims he is at a loss to understand why nothing showed up in the blood tests....
SO ARE WE !!
Next week she goes back in to get a brain scan and a lower G.I. MRI(?) to see if the cancer has spread any further.
Needless to say,we are devastated;and don't know what to expect.
For myself,I feel like valuable time has already been lost because people who should have known and done better,didn't.
I'm no expert,but I did enough reading to know that with Triple Neg,it's not so much if it's going to recur, but rather when and where.
I even asked the Dr last year about follow up scans after treatment.
He said,he would only do those if there was a problem.
Well, its seems to me he's acting a little like the police: they show up after the damage is done.
Is this par for the course ????!!!
As good as this guy is supposed to be( he's at least a 25 year veteran oncologist),we feel like he dropped the ball and are thinking about a second opinion.
I've recently talked with the nationally known Cancer Centers of America,who broadcast some very impressive statistics and have a very polished presentation.
But,how good ARE they really??
They seemed very sympathetic,but I sensed a repeating of a well rehearsed mantra of their virtues without giving any real specifics regarding their success rate with Triple Neg.
If anybody has first hand experience with any of these centers and would care to share, I and my wife would really appreciate it.
Sorry to drag on,but like all of you know there's a lot more to this than meets the eye.
Thanks for being here.
Craig
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Dear Craig,

Thank you for writing on behalf of your wife. I am very sorry you have need to be here but I believe the TNBC Foundation message board may be a good resource for you. Having said that, when there is a recurrence of TNBC it is often difficult to treat.

I am not a medical professional and will never give you medical advice but I have a thought-

My suggestion would be for you/your wife to consider getting a second opinion at a major cancer center (NCCN or NCI designated) where there are experts in the treatment of TNBC. Your ability to do this may depend on insurance coverage, as well. Some plans are open to second opinions and treatment at other institutions and some are not and some hospitals do not accept certain insurance coverage. It can be, from the experience of many here, a frustrating maze.

A specific idea-

Dr. Susan Domchek, Abramson Cancer Center, Univ. of PA in Philadelphia


Craig, has anyone mentioned BRCA testing to you? Does your wife have a family history of breast/ovarian cancer? Dr. Domchek, as well as being an excellent oncologist, is particularly knowledgeable about this mutation.

My personal conclusion is that if I had a loved one needing treatment I would rather have her go to Abramson (or a similar NCCN or NCI facility) than CTCA but that is my private, unprofessional opinion...others, here, may disagree...and that is their right and all opinions here are respected...one of the hallmarks of this site..

Please do not take any of my words as medical advice.

TNBC can be very responsive to chemotherapy and it also can be very difficult to treat especially when it metastasizes. It is also important for you and your wife to realize that every situation is different and everyone’s response to treatment may be different. I work as a patient advocate, on a volunteer basis, with folks with various cancers...especially TNBC in the last two years and it is my conclusion that there is “no one size that fits all” to TNBC. I have seen women with seemingly, almost identical disease, have vastly different reactions to the same treatment.

I am going to send you a PM with my contact info and if you would like to talk, privately, I would be happy to speak with you. 

Craig, I think it is wonderful that you are an advocate for your wife. I am sure that both of us wish you didn’t have to, but it is what it is and you are helping her in an important way, in my view. Please keep reaching out and we will be here....absent a magic wand, unfortunately, but we are here.

all the best,

Steve













I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2011 at 10:25am
p.s.

Craig, just a suggestion but it might be useful if you posted, in the future, in the TNBC Metastasis/Recurrence section. You will see posts from folks dealing with metastatic disease and your post will be read by others who may concentrate on this section of the forum and have some thoughts for you..


again, welcome,

Steve

I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote craig Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2011 at 10:45am
Steve,
Thanks so much for the candid and detailed reply.
To respond to a couple of things in your message:
While my wife's family has had it's share of cancers,(her father had lung and brain cancer at 66,her  cousin,female, on her father's side has recurring lung/esophageal cancer at mid 40's,and a cousin,male, on her mother's side has colon and thyroid cancer),no one to the best of our knowledge has had ovarian or breast cancer.We can only go back maybe two generations,as the older folks have all passed on.
As far as BRCA testing is concerned,I'm not sure what that is and I'm pretty sure it was never brought up to my wife.
And I am definitely going to contact the person you mentioned in Phila.,as we are not far from there.
I also agree with what  you said about insurance ,it is an incredible PIA.
It should not be a 'for profit' institution.Not saying the GOV should get involved either,but it needs to be  results driven,not profit driven.
She was run back and forth to this hospital or that lab for testing simply to stay 'in the network'.
One test was ordered without checking the network status and presto,we were liable for the whole bill.
She has insurance at her work,and is now scared to death they will find a way to get rid of her to save the expense.
They were very kind and considerate the first time around,but that can change.
Anyway, we must always have hope that the powers that be, will be merciful.
I will keep your contact info handy,and depending on what transpires in the next week or so,you may hear from me.
Again,thanks so much for your quick and helpful reply.
Regards,
Craig
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Post Options Post Options   Thanks (0) Thanks(0)   Quote craig Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2011 at 10:51am
Steve,
Re P.S.
Thanks for the tip.
I was debating whether to jump on there or here.
I will introduce myself on that forum as well.
Thanks again.
Craig
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Dear Craig,

The BRCA1 mutation predisposes a woman to an 80-85% chance of getting breast cancer in her lifetime and about a 45% of getting ovarian cancer. For the BRCA2 mutation the chances are about 75% for breast and 25% for ovarian. 

Also, it is important to note that when a BRCA1+ woman has breast cancer approx. 80% of the time it is TNBC. My daughter had TNBC. The converse is not true. 80% of the women with TNBC are not BRCA+.

About 1 out of 40 Ashkenazi Jews (I am AJ) carry the mutation(and it is called an Ashkenzi Founder’s Mutation) and it is estimated that about 1 out of 300-400 in the general population carry the mutation. 

Here is some info that may be helpful-


Dr. Domchek would offer good guidance to you as to whether your wife should be tested or not. From what you said, she does not present with a ‘traditional’ BRCA family which is often characterized by early-onset disease (my grandmother ovarian cancer 46, my mom and her sister breast cancer at 41, my daughter breast cancer at 36) but you never know, from my experience, and we have seen women here, absent any family history be BRCA+..especially women diagnosed under the age of 40.

Dr. Steve Narod’s group in Toronto collaborated in a paper about this and concluded that women who developed TNBC at an early age should be tested, despite an absence of family history. the n in this study was small (54 women) but I think the conclusion is important from what I have seen anecdotally on this board..


BMC Cancer. 2009; 9: 86.
Published online 2009 March 19. doi: 10.1186/1471-2407-9-86.
PMCID: PMC2666759
Copyright ©2009 Young et al; licensee BioMed Central Ltd.
The prevalence of BRCA1 mutations among young women with triple-negative breast cancer
SR Young,1 Robert T Pilarski,2 Talia Donenberg,3 Charles Shapiro,4 Lyn S Hammond,5 Judith Miller,6 Karen A Brooks,1 Stephanie Cohen,7Beverly Tenenholz,8 Damini DeSai,9 Inuk Zandvakili,10 Robert Royer,10Song Li,10 and Steven A Narodcorresponding author10
1Department of Obstetrics and Gynecology, University of South Carolina School of Medicine, USA
2Department of Internal Medicine, Clinical Cancer Genetics Program, Ohio State University, Columbus, OH, USA
3Department of Obstetrics & GynecologyUniversity of Miami/Jackson Health System, Miami, Florida, USA
4Department of Internal Medicine, Division of Hematology and Oncology, Ohio State University, USA
5Division of Genetics, Medical University of South Carolina, Charleston, SC, USA
6Carle Clinic Medical Genetics, University of Illinois College of Medicine, Urbana, IL, USA
7Medical Genetics, St. Vincent Hospital, Indianapolis, IN, USA
8Geisinger Medical Center, Danville, PA, USA
9Joe Arrington Cancer Center, Lubbock, TX, USA
10Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada
corresponding authorCorresponding author.
SR Young: sryoung37@aol.comRobert T Pilarski: robert.pilarski@osumc.eduTalia Donenberg:tdonenberg@med.miami.eduCharles Shapiro: charles.shapiro@osumc.eduLyn S Hammond:hammondl@musc.eduJudith Miller: Miller12@uiuc.eduKaren A Brooks: Kabrooks@richmed.medpark.sc.edu;Stephanie Cohen: sacohen@stvincent.orgBeverly Tenenholz: btenenholz@geisinger.eduDamini DeSai:ddesai@covhs.orgInuk Zandvakili: inukzand@gmail.comRobert Royer: robert.royer@wchospital.caSong Li:song.li@wchospital.caSteven A Narod: steven.narod@wchospital.ca

Conclusion
Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer.

.........

Also a group led by Dr. Ana Maria Gonzalez at MD Anderson Cancer Center presented a research paper last year showing, in a retrospective study, that approximately 20% of women with TNBC carried the BRCA mutation.

All the best and see you on the other forum,

Steve




Edited by steve - Mar 20 2011 at 11:37am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2011 at 11:43am
Hi Craig and welcome.  There has been much discussion on follow up care and it seems most oncs do not do regular scans without a symptom or complaint.  My onc is different and  believes in yearly scans for the first few years for her TN patients.  She sees quite a few TNBC and understands how aggressive it can be.  Like your wife, I've also had a recurrence found by a routine PET scan.  To me it seems your wife was having symptoms that were being ignored by her onc.  Please take Steve's recommendation about getting another opinion.  Like you and your wife, I've been married almost 29 years and was diagnosed in 2009 at the age of 49.  While I don't have any family history of breast cancer or other types of cancer I was still able to get the BRCA testing done in 09.  They told me the age cutoff was 50 so I hope you don't have any problems with insurance covering this test.  I was glad to be able to have the test and my insurance covered it.  Please keep us posted.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote craig Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2011 at 12:00pm
Hi Donna & Steve,
Thanks for the welcome from Donna,and Steve thanks for the additional info.
Steve,when you mentioned the Jewish connection,it reminded me that somewhere in my readings there was a statement made that African/American women also have a Triple Neg tendency ??
It's interesting how different races seem to have certain tendencies.
My wife claims there is Native American blood in her ancestry,but no one knows anything specific.
I will be away from a computer probably most of this afternoon and evening,so I may not respond to new messages for awhile.
I did want to mention that I made an attempt to talk to someone at Abramson ; but I'm sure they won't call back until tomorrow.
You know,the more I get into this,the more I wish I'd have done this last year instead of put all my faith into one guy's say-so.
Craig

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2011 at 12:25pm
Dear Craig,

I have a number of friends in the Bahamas and Dr. Judith Hurley and others from the Univ. of Miami just found an devastating African Founders Mutation in the Bahamas that is BRCA1 and most of the time is distinguished by TNBC at very early ages..

The Bahamas have been a largely isolated population for 500 years and with cousins marrying cousins the gene pool has been compromised, much like the Ashkenazi population or others in the world..Iceland, Phillipines. et.al.

I will try to post the link later.

Craig, please concentrate on today, forward...you are doing a wonderful job helping your wife...please don’t look back.

I am sending you a PM with Dr. Domchek’s appointments secretary’s contact info...

all the best,

Steve





Edited by steve - Mar 20 2011 at 12:25pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2011 at 1:29pm
Craig,
I am so sorry to hear that your wife has further problems.  I agree with Steve that it sounds like her complaints of pain were being dismissed by her onc.  Definitely get a 2nd opinion!  I just have this feeling that CTCA can be a lot of hype and trying unproven things, but it's just a nagging feeling in the back of my mind.  Please keep us informed about a 2nd opinion.  Praying that your wife responds to new treatment.  You need to have confidence in her oncologist.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisa k Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 2:03pm
Craig,
I am so sorry to hear about your wife!!!! Please be strong and continue to be her advocate!!!

Best wishes,
Lisa
44 yrs old
Dx: 10/26 Surgery: 11/17 Lump (clear margins, Sent. node biopsy 0/7)

Stage 1 Invasive DCIS (invasive portion grade 2, non-invasive grade 3)

TNBC

KI 67 - 5%

Treatment - 6.5 wks rad
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Post Options Post Options   Thanks (0) Thanks(0)   Quote craig Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 2:22pm
Hi zoomommy2 and Lisa K,
Thanks for your kind words and support.
My wife is getting a brain scan today and we are keeping fingers crossed and prayers said that all is still normal.
I do not know whether I am too sensitized to any unusual changes,or if things are indeed changing;but I have noticed her to be seemingly more forgetful of everyday things in last few days.
It could be she is just fatigued from worry and the pain,or the vicaden (?) that she takes when it gets to be too much.
It scares me because her father became very absent minded before he became seriously ill.
He would go for a drive and forget where he was going or even how to get back home.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 2:30pm
Craig,
It's not possible at this point to not be concerned about every little thing with your wife.  It just goes with the territory.  I'm praying that her brain scan is completely normal.  She has a lot on her plate, as do you, so it wouldn't be surprising that she is absent-minded.  Plus, she may have the chemo-brain that affects many of us.  Please let us know how she does and about a 2nd opinion.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote craig Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 2:48pm
Thanks Lee,
I didn't consider the chemo brain effect.
I recall her commenting on having trouble focusing shortly after she went back to work last fall.
She is a purchasing agent for a graphic arts and printing supply company,and she was getting concerned about her ability to handle orders sometimes amounting to $100K.
It's pretty fast paced work and she has to be constantly on the phone with vendors for parts and supplies.
Regarding the 2nd opinion,I was just on the phone with a rep from the University of PA cancer center in Phila. to get information concerning getting her down there for evaluation.
It was recommended to get her registered,but wait until test results are available to schedule an appointment.
So,I feel good about moving forward with that anyway.
Now if my business would start picking up,that would ease my mind just a little bit more !

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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 2:56pm
Craig,
It must be a very stressful work environment for your wife.  I'm not sure I could have worked during chemo and shortly afterwards.  Fortunately, I was already retired.  I love to read but wasn't able to concentrate at all during chemo and for several months afterwards.  Fortunately, that ability has returned.  Praying that your business picks up to ease your mind!  Sounds like you are making progress in getting that 2nd opinion.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote craig Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 3:22pm
Hey,
Thanks again for your support.
I own a small machine shop and am chief,cook,and bottle washer;along with doing A.P., A.R.,shipping/receiving,estimating,job setups and machine maintenance.
I also have two employees to stay ahead of as well.
People sometimes hear me talk to myself,and I just tell them I'm having a board meeting :)
But lately I'm doing a lot of talking to God for guidance and strength to keep it all together.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 3:54pm
I know it's hard to be self-employed.  My husband did that at one time for a few years.  It was a difficult time in our lives.  With the economy the way it is, I don't envy you the challenge.  Good luck!
 
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote craig Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 4:17pm
It takes way too much time,but I've managed to keep going for 20+ years.
The first 10 were with a partner,but when he left his family for another woman we called it quits.
I moved the shop 3 times and have expanded with each move.
It's been a real roller coaster ride, because one year will go like gangbusters,then the next year is just a bust.
Makes it hard to plan for anything.
But at least I still have a job.
There's thousands who don't.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 4:22pm
Congratulations on keeping the business going for over 20 years.  It's satisfying to run your own business, but sometimes the money isn't there for payday!  We found it better in the end to have somebody else writing the checks.  It's definitely good in this economy to have a job. 
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2011 at 7:04pm
Craig, I'm so sorry you guys are dealing with this.   Unless/until you get a positive biopsy, keep in mind that these scans are know to generate false positives.  It may not be cancer they saw on the scan.   You'll need to investigate further to know for sure.

I'm with others in advising a second opinion, though not because your current oncologist 'dropped the ball'.    Unless the recurrence is local/regional, meaning in the breast or nodes near the breast, there is no documented survival advantage in finding a distant recurrence early.  Strange but true.  

And if your wife does indeed have a bone met but no other mets in organs, there is actually a silver lining.   Women with bone mets can live a very long time with their disease - on the order of 10,15 years or more. There are cases of women living 30 years with stable bone mets.   If you have to have spread, bone is the place to have it. 

Hang tight, Craig.   We are here for you.
love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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