53rd St. gang a.k.a. Nancy's kids

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so-scared
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Joined: Wed Jun 01, 2011 12:53 pm

Re: 53rd St. gang a.k.a. Nancy's kids

Postby so-scared » Sun Sep 22, 2013 5:35 pm

rusuja - He obviously can not participate in contact sports. As far as the running goes, he is forbidden by Dr Kemeny herself. If the catheter is dislodged etc he will be out of luck. He can not even jog. He was told that he can do a brisk walk but no jogging/running. They do encourage you to exercise but no jarring stuff in there. I know another lady who was told she can not ride horse. I think to be on the safe side you should ask the doctor. I would guess that when one is done using the pump it would be okay. Juliej says that they hooked hers in better. We asked for this too but he is still not to run/jog. Maybe it is because he is a long distance guy but I don't think so because they said none. They did not say a little run is fine.

I see Al is done with treatment. Good for you, Al! That is fantastic!! This may be why his running is not an issue. Again, ask the doctor but my DH was told absolutely not! Scott tried to swing her because running is his passion but no luck getting her to change her tune.
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

radnyc
Posts: 439
Joined: Tue Apr 06, 2010 6:32 pm

Re: 53rd St. gang a.k.a. Nancy's kids

Postby radnyc » Sun Sep 22, 2013 5:53 pm

Ok, well, you gotta do what Dr. K says, it's her show up there. Good luck!
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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ptfly
Posts: 392
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Facebook Username: Paul Turley little rock, ar
Location: Little Rock, AR
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Re: 53rd St. gang a.k.a. Nancy's kids

Postby ptfly » Mon Sep 23, 2013 9:18 am

Our consult is at 8 am on Oct 9th. Hope to meet up with some of you if possible.
Paul
Husband to Tracie with stage 4 CC. Liver Mets
DX 5-10-13. C resection 5-17-13. 5/17 LN
FOLFOX+AVI 6-11 thru 9-19-13
HAI pump on 10/31/2013 :) Stopped 9/14 :(
https://www.facebook.com/paul.turley.92
Passed peacefully in my arms at home on 11/11/14

Kathy
Posts: 114
Joined: Sat Mar 14, 2009 8:28 pm
Location: New Jersey

Re: 53rd St. gang a.k.a. Nancy's kids

Postby Kathy » Tue Sep 24, 2013 11:13 am

I just found out I have an appointment tomorrow afternoon (Wednesday Sept 25} after a 3 day stay in my local hospital with an intestinal obstruction and the wonderful NG tube. Anyone else there at this time? Would love to see some cc members. I often have sat there wondering who else is a member of our wonderful club. We need to wear some secret identification.
Kathy
Stage 1- resection 9/ 05
Recurrence-2/ 2008 chemo/radiation 5 FU/oxi
APR surgery 7/ 2008- Found spread to liver-Margins not clean
chemo between surgeries
Liver resection and HAI pump-11/ 08 Chemo 6 months
NED 11/08

NED since 11/2008

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: 53rd St. gang a.k.a. Nancy's kids

Postby Badass » Tue Sep 24, 2013 1:03 pm

I will be there as well as So-Scared's husband. Yes...would be good to have a signal. Maybe we can identify a part of the waiting area to head toward and then the first to arrive can maybe write Colon Club on a piece of paper and prop it up on the table.

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

5hortbus
Posts: 1
Joined: Tue Sep 24, 2013 11:17 am

Re: 53rd St. gang a.k.a. Nancy's kids

Postby 5hortbus » Tue Sep 24, 2013 2:43 pm

Hi gang,
I'm brand new to this CRC Stage IV game as of 7/31 and brand new here. I don't want to hijack a great thread. Can someone point me to a post or place for finding out more about Dr. K and HAI? Just heard about it last night and am pissed that my team at Northwestern didn't advise. 43, with a 4 and 6 year old, and every bit of time I can grab, I will.

Going in for my third bi-weekly FOLFOX infusion tomorrow and am going to ask for a referral to MSK and Dr. K.

Feel free to PM me a link so as not to muddy the thread too much. Any info is appreciated.

Haven't figured out the lingo of a signature yet. But, CRC obviously in colon, lymph nodes nearby, sacrum/spine lesions, couple of hot spots on both lungs, and what appears most important for Dr. K and for a plan of attack, both lobes of liver are pretty involved.

Thanks in advance for your help. Hope to join this '"Gang" within a "Club"' sooner rather than later.
CRC4 liver, lung, mets DX 7/31/13
FOLFOX 8/28

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ptfly
Posts: 392
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Facebook Username: Paul Turley little rock, ar
Location: Little Rock, AR
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Re: 53rd St. gang a.k.a. Nancy's kids

Postby ptfly » Tue Sep 24, 2013 5:23 pm

http://www.mskcc.org/cancer-care/doctor/nancy-kemeny

646-497-9053

You can call that number and find out what is needed for her to review your status and possibly set up a consultation.
I got my wife's info there weeks before we told her Onc about it. It wasn't her Onc's first selection but we feel her wasn't up to date on her success rate. He will support us.
I also checked with our insurance to see if it was covered and in or out of network.
Hope that helps,
Paul
Husband to Tracie with stage 4 CC. Liver Mets
DX 5-10-13. C resection 5-17-13. 5/17 LN
FOLFOX+AVI 6-11 thru 9-19-13
HAI pump on 10/31/2013 :) Stopped 9/14 :(
https://www.facebook.com/paul.turley.92
Passed peacefully in my arms at home on 11/11/14

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: 53rd St. gang a.k.a. Nancy's kids

Postby juliej » Tue Sep 24, 2013 6:44 pm

so-scared wrote:Juliej says that they hooked hers in better.

Yes, I told the surgeon I was a competitive runner so he said he would implant the pump deeper and stitch it down more securely. As far as I know, I'm the only person who had this done. I ran slower and for less distance when I had FUDR in the pump, but I increased my speed/miles when I went off treatment.

I love the idea of wearing some kind of secret identification so we recognize each other in the waiting area! :D I won't be there until the end of October, but I'll be sending good energy to all of you having scans, pump maintenance, consults, and treatment!
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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paula
Posts: 450
Joined: Sat May 31, 2008 10:20 am

Re: 53rd St. gang a.k.a. Nancy's kids

Postby paula » Tue Sep 24, 2013 8:15 pm

Juliej, I like the idea of identification "attire" or something else letting us colon clubbers spy each other. It's better than cruising the waiting room looking for familiar faces like I did once :) How about a blue blouse/shirt? Does anyone have any other ideas?
3/08 Stage IIIa, colon resection, 12 rounds folfox
5/10 recurrence; right lobe liver metastasis
Hepatic resection 6/10; HAI pump and 6 months folfox/FUDR
Currently NED

The world is unfathomably beautiful today

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: 53rd St. gang a.k.a. Nancy's kids

Postby Badass » Tue Sep 24, 2013 8:24 pm

Deleted ....
Last edited by Badass on Wed Sep 25, 2013 3:10 am, edited 1 time in total.
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: 53rd St. gang a.k.a. Nancy's kids

Postby juliej » Wed Sep 25, 2013 12:24 am

paula wrote:Juliej, I like the idea of identification "attire" or something else letting us colon clubbers spy each other. It's better than cruising the waiting room looking for familiar faces like I did once :) How about a blue blouse/shirt? Does anyone have any other ideas?

Paula, I was hoping for a secret handshake, like a fist bump or maybe a "pump bump" for the HAI group! :D

Really, though, we need an identifier, something women and men can both wear, not necessarily something blue (since lots of people wear blue shirts), but something....
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

kiwiinoz
Posts: 1156
Joined: Thu Jan 03, 2013 11:44 pm

Re: 53rd St. gang a.k.a. Nancy's kids

Postby kiwiinoz » Wed Sep 25, 2013 12:49 am

juliej wrote:
so-scared wrote:Juliej says that they hooked hers in better.

Yes, I told the surgeon I was a competitive runner so he said he would implant the pump deeper and stitch it down more securely. As far as I know, I'm the only person who had this done. I ran slower and for less distance when I had FUDR in the pump, but I increased my speed/miles when I went off treatment.

I love the idea of wearing some kind of secret identification so we recognize each other in the waiting area! :D I won't be there until the end of October, but I'll be sending good energy to all of you having scans, pump maintenance, consults, and treatment!


Guys, to keep this in persepctive a light run for Julie is 15 miles, where as a light run for us mere mortals is 1.50 miles :D
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

Kathy
Posts: 114
Joined: Sat Mar 14, 2009 8:28 pm
Location: New Jersey

Re: 53rd St. gang a.k.a. Nancy's kids

Postby Kathy » Wed Sep 25, 2013 7:49 am

I will try to sit near the infusion room and coffee area,although sometimes you just need to find a seat. I have short brown hair. I have on a purple short sleeve blouse with sparkles at the neckline. (I tried to find something that would stand out.) I will try using the colon club sign on table. 2:45 appointment. Looking forward to seeing the others.
Kathy
Stage 1- resection 9/ 05
Recurrence-2/ 2008 chemo/radiation 5 FU/oxi
APR surgery 7/ 2008- Found spread to liver-Margins not clean
chemo between surgeries
Liver resection and HAI pump-11/ 08 Chemo 6 months
NED 11/08

NED since 11/2008

User avatar
paula
Posts: 450
Joined: Sat May 31, 2008 10:20 am

Re: 53rd St. gang a.k.a. Nancy's kids

Postby paula » Wed Sep 25, 2013 8:02 am

looking forward to hearing about the meeting of at least 3 of you Nancy's kids! Hope all goes great for each of you and keep us posted if you can....love
Paula
3/08 Stage IIIa, colon resection, 12 rounds folfox
5/10 recurrence; right lobe liver metastasis
Hepatic resection 6/10; HAI pump and 6 months folfox/FUDR
Currently NED

The world is unfathomably beautiful today

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: 53rd St. gang a.k.a. Nancy's kids

Postby Badass » Wed Sep 25, 2013 8:43 am

For the long run...Ashlee posted a Cancer Warriors thread with a link to chooosehope.com. Maybe we can find some trinkets on there that we all buy and then wear upside down or something to our appointments.
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)


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