Question for Dr. Kemeny's patients

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mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Question for Dr. Kemeny's patients

Postby mpbser » Wed Dec 12, 2018 4:57 pm

Does she allow chemo to be done at local cancer centers?
Last edited by mpbser on Wed Dec 12, 2018 5:31 pm, edited 2 times in total.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Number1994
Posts: 4
Joined: Wed Feb 14, 2018 10:58 am

Re: Question for Dr. Kemeny's patients

Postby Number1994 » Wed Dec 12, 2018 5:11 pm

Dr. Kemeny requires that you have the pump filled at MSK as she likes to be able to make the dosage adjustments the same day as your liver function tests.

She will however allow you to have your pump emptied at your local facility. Assuming that they have been trained in servicing the pump. You can also get your systemic chemo locally at that time. Dr. Kemeny will send the systemic orders to your local facility.

I would go to MSK once a month for systemic and pump fill. I would have it emptied and have systemic locally (Washington DC). I have the Codman pump however, not many places are servicing the Medtronic pumps yet, although some are.
1/25/18: 39yo male DX Stage IV, 7cm primary Sigmoid colon, 7 Liver Mets
2/23/18: Colon Resection, TME, HAI Pump implated MSKCC (Dr. Paty)
3/12/18: Start Oxaliplatin and Irinotecan
5/7/18: MRI/CT, Liver mets shrunk by 60%-75%
6/1/18: Liver resection (Dr. D'angelica), 6 out of 7 tumors removed. tiny met left in place, suspected dead
8/2/18: Drop Oxaliplatin, add 5-FU
9/12/18: Buy new Corvette, because fuck cancer.
11/5/18: Dr. Kemeny confirms MRI/CT show NED.

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Question for Dr. Kemeny's patients

Postby mariane » Wed Dec 12, 2018 5:28 pm

Hi!
I am an older Dr. Kemeny's patient and I live in Atlanta, GA. When I did chemo, I used to alternate. I had systemic chemo infusion and FUDR chemo (HAIP) in NY. 3 days later disconnecting and check up in Atlanta. 2 weeks from chemo in NY I got systemic chemo in Atlanta. This system worked very well for me. It still does. I have been off chemo for over 2 years, NED for 3.5 years. I have controls in Atlanta (labs and HAI pump flush), and in NY (scans, labs, another pump flush). NY every 4 months, Atlanta every 4.
I feel very well, my labs all came back to normal. Everything looks good at this moment. Back to my normal self minus fear...
They have currently 5 patients in Atlanta as far as I know. Most of them NEDers, off chemo.
Dr. Kemeny herself introduced me to Dr. Ballard from Piedmont Cancer Center in Atlanta and facilitated all the process for me. She called Dr. Ballard several times to check on me and insisted on no chemo delays to get the best response to chemo possible. It turned out well. I am very grateful to Dr. Kemeny and Dr. Ballard. Dr. Kemeny herself encouraged me to alternate chemo.
Good luck!
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Question for Dr. Kemeny's patients

Postby mpbser » Wed Dec 12, 2018 5:33 pm

Good to know, thanks for the input. And CONGRATS on your NED status!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Question for Dr. Kemeny's patients

Postby mpbser » Fri Dec 28, 2018 10:43 am

Reviving this thread now that my husband and I got to see Dr. Kemeny this past Wednesday.

We spoke with her a little bit about having some of the HAI pump servicing done locally in the Albany, NY area which is the closest big city to where we live. She didn't know off the top of her head if she has any oncologist connections there so I thought I would ask here. Anyone know anyone in the Capitol Region?

It would not be a huge hardship to go down to W. Harrison (Westchester) but it would be better to have the flushing/systemic done locally if we could.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED


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