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Anyone from St. Louis, MO?

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Topic: Anyone from St. Louis, MO?
Posted By: 123Donna
Subject: Anyone from St. Louis, MO?
Date Posted: May 17 2010 at 8:35pm
I have a friend that is looking to switch to Siteman Cancer Center in St. Louis, MO.  She's looking for a new oncologist and was dx as Stage 0 (DCIS) TNBC 2 years ago.   If you have any recommendations, please share your experience and I'll pass them onto her.

Thanks,

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




Replies:
Posted By: Tamala
Date Posted: Aug 25 2010 at 4:11pm
Donna,
 
I am sorry I just saw this post.  I go to Siteman Cancer Center is St. Louis.  Has your friend found a new oncologist yet?


-------------
dx 5/14/10 stage IIB, grade 3; TN IDC; Age 50; 4 cm; 4 AC bi-weekly, 12 Taxol weekly; chemo done 10/15/10; bi mx w/tissue expanders 11/19/10; pCR; 28 rads finished 3/16/11
11/16/12 check-up NED


Posted By: 123Donna
Date Posted: Aug 25 2010 at 7:33pm
Hi Tammy,

Thanks for replying.  To make a long story short she did see a new onc at Siteman for the tumors on the liver.  Because she had TNBC 2 years ago we just assumed it was mets to the liver.  They did a biopsy and it was highly ER positive.  So she decided to have her ovaries removed to reduce the estrogen effect on the tumor.  When they did the hysterectomy they found a tumor on the ovary and attached to the intestine.  They had to do a major hysterectomy and also remove part on the intestine.  During the path from the surgery it was found that she has Peritonneal Cancer, not breast cancer.  The biopsy of the liver confirmed it also.  Since it was a different kind of cancer and more closely aligned with ovarian cancer, she needed to see an onc that specialized in this type of very rare cancer.  I don't remember the name of the new onc but its with BJC and she's getting treatment at Mo Baptist. 

Who's your onc at Siteman?  She was seeing Dr. Norton when they thought it was a recurrence of bc.

How are your treatments going?  Hope all is well with you.

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



Posted By: Tamala
Date Posted: Aug 25 2010 at 9:50pm
Donna,
 
I am so sorry your friend is going through this. I didn't know what Peritonneal Cancer was, so I had to look it up.  It sounds like it's a very serious diagnosis, and I'm glad she found someone who specializes in it.  As if it wasn't enough that she had TNBC 2 years ago, and now she's faced with this.  I really feel for her and will keep her in my prayers.  I hope she recovered well from such an extensive surgery and that her treatments are going well.  What chemo do they do for this type of cancer?
 
My onc at Siteman is Dr. Michael Naughton.  My treatments have been going so well it just doesn't seem right.  After my 2nd AC treatment my tumor had shrunk to the point that it can't be felt at all.  I finished AC with no side effects other than fatigue and even that was not as bad as I expected.  I have now completed 4 of 12 weekly Taxol treatments and so far have no side effects.  I am feeling so good that all of this just doesn't seem real.  I told Dr. Naughton that this is all just a big mistake and there's nothing wrong with me.  I wish.
 
Who is your onc and where did you get your treatments and have your surgery? 
 
Tammy


-------------
dx 5/14/10 stage IIB, grade 3; TN IDC; Age 50; 4 cm; 4 AC bi-weekly, 12 Taxol weekly; chemo done 10/15/10; bi mx w/tissue expanders 11/19/10; pCR; 28 rads finished 3/16/11
11/16/12 check-up NED


Posted By: 123Donna
Date Posted: Aug 25 2010 at 10:12pm
Tammy,

When my friend thought the liver mets was from the TNBC, she went to Dr. Naughton also.  She really liked him.  Her new onc is giving her Carboplatin and Taxol.  Carboplatin/Taxol one week, followed by Taxol weekly for the next two weeks, then off a week.  So far she is feeling really good and tolerating the chemo.  She's even remodeling their house!  I think the project is keeping her mind off of her disease.  She doesn't want to know anything about it nor ask for odds or timelines.  I'm just the opposite and want to know everything.  It's her wish on how she wants to live her life, so we keep our conversations light and positive and talk about kids, dogs, the house, etc. 

I go to St. Louis Cancer and Breast Institute.  Dr. Borson is my onc.

I'm glad you're feeling good and having minimal side effects.  You can't ask for more than that when going through tx.  I hope the rest of your treatment goes just as smoothly.

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



Posted By: TysMom
Date Posted: Aug 27 2010 at 3:26pm
Donna, who is she seeing at Mo Bap?  That is where I go and I see Dr Alan Lyss. 
Where is the St Louis Cancer and Breast Institute? That is one that I had not heard of. 
I thought about going to Siteman at first and when I did some research I found out that they were doing the same study that I am in at at Mo Bap so I didn't see any reason to switch. 
 
Maybe all of us St Louis gals need to plan a get together...


-------------
44 at dx
TN IDC Gr3/St 3 1/17 nodes+
5cm tumor removed 3/12/10
Taxol weekly for 12 weeks FINISHED 7/21/10
9 Avastin FINISHED 9/1/10
DD A/C 4 tx-FINISHED 9/15/10
BI-MX 10/6/10
BRCA 1/2 neg


Posted By: 123Donna
Date Posted: Aug 27 2010 at 5:55pm
Tysmom,

I'm not sure who my friend is seeing at MoBap.  Previously she had consults with Dr. Lyss and was seeing Dr. Naughton when they thought the tumor mets was from the tnbc.  Since it's a different type of cancer she's seeing a different onc who specializes in peritonneal/ovarian cancer.  She said when she gets chemo all the other ladies are ovarian cancer patients.

It would be nice to meet some of the St. Louis ladies from our forum.  A get together sounds good to me!


-------------
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



Posted By: Allison
Date Posted: Aug 27 2010 at 7:08pm
Ladies -- Let's do it!!!

Donna, I get the feeling from Dr. Borson that there are quite a few of us in the area and I'm sure there survivors throughout the region that seek treatment at Siteman.

We could even do something simple like meet at a Bread Co, in a central location, get to know each other a little more.

What do ya think?!?!

  


-------------
9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.


Posted By: 123Donna
Date Posted: Aug 28 2010 at 11:07am
Allison,

I like your idea of a get together.  Breadco sounds yummy to me.  We'd have to coordinate times with everyones schedule to see what would work best.  Maybe if others post or send PM we can set a date and time to meet.  Hopefully others will join in with us. 

Dr. Borson told me she sees quite a few TNBC patients.  When I was going thru tx I wanted to ask the other ladies during chemo if they were tn, but never did.  I should have worn a sign "Are you TNBC?"  I wouldn't have felt so alone.

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



Posted By: TysMom
Date Posted: Aug 28 2010 at 2:33pm
I love Bread Co!!
What area is everyone in?  I am close to South County, but know my way around other areas a little bit. 


-------------
44 at dx
TN IDC Gr3/St 3 1/17 nodes+
5cm tumor removed 3/12/10
Taxol weekly for 12 weeks FINISHED 7/21/10
9 Avastin FINISHED 9/1/10
DD A/C 4 tx-FINISHED 9/15/10
BI-MX 10/6/10
BRCA 1/2 neg


Posted By: Tamala
Date Posted: Aug 30 2010 at 1:41pm
Please count me in as well!  I would love to get together with all of you.  I live in St. Charles County, but I will be happy to drive wherever is most convenient for everyone.
 
Tammy


-------------
dx 5/14/10 stage IIB, grade 3; TN IDC; Age 50; 4 cm; 4 AC bi-weekly, 12 Taxol weekly; chemo done 10/15/10; bi mx w/tissue expanders 11/19/10; pCR; 28 rads finished 3/16/11
11/16/12 check-up NED


Posted By: scootyaya@aol.com
Date Posted: Aug 30 2010 at 4:28pm
Hi Ladies,
 
I live in O'fallon, MO and I would love to get together.  I am still off work after having my reconstruction on 8/3 so you name the time and Bread CO location


-------------
DX TNBC medullary 1/10 age 45, Stage 2A,Grade 3, 2.3 centimeters, nodes negative,BRCA testing negative

2/10 bilat mastectomy-tissue


Posted By: 123Donna
Date Posted: Aug 30 2010 at 4:33pm
Ladies,

I work during the day but do get a Friday off occasionally.

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



Posted By: briestarr
Date Posted: Aug 30 2010 at 8:44pm
How do I find out if anyone lives close to me?  I am jealous!!  Need a TNBC buddy near by!!
I had a good first day back at work!! MY dog was happy to see me!  It is the same stuff at work, didn't change a bit!!  And, no one wanted or needed to know anything about my cancer.  So, here I am ... they make a big deal when someone dies, but if anyone gets sick... they could care less.... go figure? 
 
Brie


-------------
DX TNBC Feb 2010
age 48
Lumpectomy 2cm
6 nodes removed, all clear
Chemo A/C and Taxol 8 sessions
Radiation 33x
BRCA 1 and 2 negative


Posted By: 123Donna
Date Posted: Aug 30 2010 at 9:15pm
Brie,

I'm so sorry they didn't recognize your return with a celebration.  I work in a small office and my co-workers celebrated my return.  They sent me cards and flowers right after each chemo.  It sure lifted my spirits.  Maybe they didn't know what to say.  People react funny when they know someone's had cancer.   It's like if they talk about it or say anything they might get it.  We're not contagious!

Try starting a new post with a question like this one "Anyone from Reno, NV area?"  I'm sure you'll get some responses.  To start a new thread just go to TNBC Talk and you'll see the + sign for start a new post.

Congratulations on your first day back at work.  Are you tired now?  I was exhausted when I went back full time.

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



Posted By: briestarr
Date Posted: Aug 30 2010 at 9:54pm
A little tired!  But, okay!  I have found out after 20 years with this company that everyone is self absorbed and into their own things and life.  I have made it clear that I want to celebrate now, and not when I am dead.  But, it is habit for people to just think we want all the flowers and cards at a funeral.  Not me... I want to celebrate life now!!  Thank you for the advice...  I am going to eat and go to bed... good night!! 
 
Brie


-------------
DX TNBC Feb 2010
age 48
Lumpectomy 2cm
6 nodes removed, all clear
Chemo A/C and Taxol 8 sessions
Radiation 33x
BRCA 1 and 2 negative


Posted By: 123Donna
Date Posted: Sep 19 2010 at 9:03pm
Let's try to arrange a get together for all of us in the St. Louis, MO area.  Please post whether the day or evening works best for you. 

I work during the day but have every other Friday off, so I could meet during the day on one of those Friday's or after work.  We could even meet on the weekend if that's better for everyone's schedule.

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



Posted By: Allison
Date Posted: Sep 19 2010 at 10:13pm
Donna,

Evenings or weekends would be better for me. Between work and teenagers my days are pretty busy. I am really hoping that we can get some people together.






-------------
9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.


Posted By: scootyaya@aol.com
Date Posted: Sep 19 2010 at 11:43pm
Evenings and weekends also work for me, I hope we are all able to meet

-------------
DX TNBC medullary 1/10 age 45, Stage 2A,Grade 3, 2.3 centimeters, nodes negative,BRCA testing negative

2/10 bilat mastectomy-tissue


Posted By: 123Donna
Date Posted: Sep 21 2010 at 10:08pm
I'm just going to throw this suggestion out here.  How about Tuesday, October 5th or Thursday, October 7th?  Maybe we could meet someplace in the middle, like a BreadCo around 270 and Manchester or 270 and Olive.  What do you think?

-------------
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



Posted By: TysMom
Date Posted: Sep 22 2010 at 9:20am
That sounds good except that I will be in the hospital on the 7th.  My surgery is scheduled for the 6th.  I am going to be in panic mode on the 5th, so I wouldn't be very good company.Confused However, I will make the next get together!

-------------
44 at dx
TN IDC Gr3/St 3 1/17 nodes+
5cm tumor removed 3/12/10
Taxol weekly for 12 weeks FINISHED 7/21/10
9 Avastin FINISHED 9/1/10
DD A/C 4 tx-FINISHED 9/15/10
BI-MX 10/6/10
BRCA 1/2 neg


Posted By: 123Donna
Date Posted: Sep 22 2010 at 9:45am
Would you want to move it up to next week?  I'm available any night except Monday, the 27th.

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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