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

[so-scared]

My husband will not be there today. He is sick and is heading to the local onc. I hope everyone has a nice 'meeting' without him!

[ptfly]

My husband will not be there today. He is sick and is heading to the local onc. I hope everyone has a nice 'meeting' without him!

I am sorry to hear that and hope he feels better soon. I am in the same boat and taking my wife to see her Onc as soon as I can get her ready.

[SaveMyArchie]

I'll be just across the bridge in Astoria (Queens) tomorrow morning through Tuesday. Don't be afraid to get in touch! Looking forward to seeing you, Paula

[pfCml73183]

Been thinking about Paula lately. Does anyone keep in touch with her?

[ams5796]

Paula's on facebook. She seems to be doing very well!





Ann

[Stanfordmom]

Hi all,

Just saying hi as I recently became one of Dr. K.'s kids.

Also here are quite some new members, Arizona mom, and Maddielolo are the two I remember. Maddielolo and I both will have surgery in Sept. (hers on 9/11 and mine on 9/18). If any of you are there in Sept., love to meet you in person!

Sha

[pfCml73183]

I was hoping this would become active again.
Thank you Ann for your quick response. I am happy for Paula. Hooray for her! Will you tell her we asked for her and maybe she can stop by and give us an update? I would love some good news stories.
Sha, how are you doing? I have a loaded question; Pete is on Folfori right now. Two weeks ago he had system growth so they added the Irinotecan. His CEA is still climbing 17 points in the first 2 weeks use. He is also in a lot of abdominal pain. He has not had diarrhea but has slowed down some. He is in bed a good week after treatment. Do you know if this is the usual? I don't see how he can go on like this and the other chemo choices sound even worse.
Any input would be appreciated.
I want to send a hug out to Paul and Tracie as well. I hope she is feeling better.

[ptfly]

Tracie is feeling better from her "too fast" 5FU infusion 3 weeks ago.
She had to skip a treatment/trip to MSK a week ago but she will be there a week from today.
Looks like I will move my ticket out to sept 21-23 now that we are on a new schedule. I have to look but maybe that is when the fund raising walk with Dr. K happens.
Good luck to the sept HAI pump "kids". You are in good hands.
Paul

[juliej]

Maddielolo and I both will have surgery in Sept. (hers on 9/11 and mine on 9/18). If any of you are there in Sept., love to meet you in person!

I couldn't be happier to hear the news! In November I will have had my pump for 3 years. I've never had anything show up on my liver on a CT scan since it was implanted. I truly owe my life to Dr. K and the excellent surgeons at MSK.

I will be there a little earlier in September, which bums me out because I wanted to meet you, Sha. Will you be there earlier than the 11th to settle in?

I arrived, suitcases in hand, the day before my surgery date. I spent the night before surgery obsessively scrubbing the rental apartment so it would be clean when I was released from the hospital. The good part was I didn't have time to get anxious! The next day I was in surgery from 8:30 am to 3:45 pm for three procedures: LAR, liver resection, and HAI pump. I left the hospital 7 days later and took a taxi to the apartment. Two weeks later I went to Macy's Thanksgiving Day parade with 54 staples in my abdomen, but my head held high! It was an incredible experience to hear the "we got it all" news from pathology. I'm hoping both of you have the same excellent results - and a quick and painless recovery!

Julie

[BrownBagger]

The professionalism of the whole outfit is clearly evident in the hospital. The service and care couldn't have been better. Like Juliej, I had a double-lung job back in 2012. Last year I had an RFA in-and-out-the-same-day lung procedure. Both experiences were very positive, all things considered. Good food, too.

[Stanfordmom]

Julie, I will get there around Sept. 14th so looks like we are going to miss each other.

Paul, I am not sure if I will be discharged yet on 23rd. But I will be ithe NYC for about two months so maybe we can meet you guys in Oct.?

Celeste, I have never used Irinotecan so I cannot comment on the specific side effects of it. But during my first cycle of xelox (oxiliplatin and xeloda) in Apr, my CEA actually went up a bit. Then it went down consistently for the next 5 cycles. Another gal I made friends with on the internet had her CEA doubled for the first two cycles, and then went down for the next 6 cycles. So please try not to worry about CEA going up in the early cycles. Sometimes it is a good sign as dead cancer cells free flaring in the blood contribute to the CEA number.

Hope to meet all of you in the future!
Sha

[arizona mom]

Hello,

First, I want to thank all of you who were my inspiration to get a second opinion at MSKCC and then be my encouragement to do everything I needed to do to make treatment there happen. I am truly grateful for this board and all the wonderful people I have met here!

My surgery was 3 1/2 weeks ago. I had 30% of my liver and 50% of my colon removed and a HAI pump installed. Post op reports were all excellent. I seem to be healing well. Margins on what was removed were clear. They looked at over 80 lymph nodes and all were cancer free! 70-80% of the cancer was already dead from the 4 treatments of FOLFOX (2 with Avastin) I had before surgery. AND...My 2 week post-op blood work showed my CEA at 1.6! (my peak CEA was 78 right before my first chemo treatment)

I admit that I am frustrated with how long recovery is taking. I really thought I would feel closer to normal by now. But the doctors assure me that I am right on schedule and I just need to give myself time to heal.

I am not officially one of Nancy's kids. I was originally assigned to Dr Cercek as my oncologist. I do like her a lot, but I still sometimes wonder if I might be better off under Kemeny's wings, just because she has such a great reputation here. I guess I'll stay with my current plan (which seems to be going very well) and keep Kemeny in my pocket if I ever feel I need something different.

Dr Cercek plans for me to have another 8 treatments of FOLFOX and 4 treatments of whatever goes in the HAI pump. She seems to be very conservative about treatment and watches and strictly abides by the latest studies.

I am home in AZ now, but will return to NY for treatments to start on Wed, Aug. 27th. Anyone else going to be hanging around 53rd that day?

Lara

[pfCml73183]

Lara, it sounds to me like you are doing great. I think you are in good hands. My husband just got out of the hospital at 2.5 weeks and got his first pump infusion at 3.5 weeks, had home care in our hotel for incision infection and got home around week 4.
I would recommend not looking back.
Peace and best wishes, Celeste

[Stanfordmom]

Lara,
So glad to hear that you are doing well!

I won't be there till Sept. 18th, maybe meeting you again in October?

Please say hello to your hubby for me.

Sha

[hart2hart]

So glad to read about all the "NEW" Nancy's kids.....

Best decision we ever made was to switch to MSKCC! We feel they have put Pete in the best position
for long-term remission/cure!!

Ya'al' will do great with D. K and group........!

Keep us all updated!!! Next year plan on the walk and brunch!

I think we have 6 or 7 registered! It's gonna be FUN!


Cheers!


Julie and Pete
stamford, CT