HAI pump treatments for out of town folks...need input from other Kemeny kids

Please feel free to read, share your thoughts, your stories and connect with others!
Cfbiff
Posts: 50
Joined: Mon Jan 18, 2016 12:04 am

HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby Cfbiff » Wed Jun 29, 2016 11:51 am

We received the HAI pump and sigmoid resection at Sloan on Friday. Still in hospital now, but attempting to set up follow up visits. We live in the Midwest and will need to fly in for the treatments each month.

We are trying to reduce the time I have to be away from work.

The question is: are there any out of towners that receive the HAI pump treatment AND the systemic chemo (irino/5fu) treatment on the same day at 53rd street? Then fly home with the 5fu pump..... And mail it back after two days OR bring it back after 4weeks?

I can't get a straight answer from kemeny's office staff? They don't seem to understand my question and just keep telling my it's up to the Dr to assign treatment.
I just trying to see if it's possible to avoid flying out(day 1), meeting with Kemeny (day 2), flying back (day 3), receive systemic chemo locally (day 4).........would like to cut day 4 and go to work instead, if possible.

Anyone out there with out of town experience with this process?
7/15 dx colon cancer stage 4, mets to liver age 46
Cea 1700
8/15 folfox
1/16 cea 47
2/7 began consults with Dr Kemeny about liver pump.
2/16 FOLFIRI /started
3/7 laparoscopy showed no cancer in abdomen
3/2016 began folfirinox and asked again about hai pump
5/16 CEA 186
6/16. colon resection and HAI pump, 15/33 lymph nodes, margins clear
7/16 FUDR began. CEA 300+
8/16 FUDR 2nd treatment and FOLFIRI systemic restart. CEA 400+
9/6 added mitomycin to pump.
10/5 CEA coming down

arizona mom
Posts: 127
Joined: Thu May 08, 2014 10:25 am

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby arizona mom » Wed Jun 29, 2016 1:32 pm

When I got the 5fu "pump" at MSK in late 2014, it was disposable. It looked like a water balloon and was somehow activated with a heat sensor. It shrank down to the about the size of a cigar. Of course, it needs to be properly disposed of, but I did not need to bring it back to MSK. IMO, it was much better then the buzzing mechanical pumps I got in Arizona. Not only did it not have that irritating buzz, it easily fit in a side pocket toward the end of treatment. I don't know if they still use them but disposable pumps are a good choice for MSK because many that go there are in a similar position as you.

BTW, I think it was MSK that taught my husband how to disconnect. He didn't do it often, but It came in very handy a couple times. Here is Arizona, that was a big "no. absolutely not".

Congratulations on a successful surgery. I hope all goes well.
47 yrs mom of 4
5-7-14 - dx stage IV-3 liver mets. CEA 76
5-20-14 Folfox w/Avastin
7-24-14 - Colon/liver resection and HAI implant at MSKCC
11-18-2014 - scan- NED!
12-19-14 finished 12 treatments of Folfox (dropped Oxali after 9)
2-19-15, 6-18-15 clean scans - NED
9-11-15 mets in ovaries - hysterectomy - CEA 1.0
Folfiri 10/15 to 3/16
3-24-16 CT scan NED
7-1-16 It's back. 1cm in lung and 3 peri mets. :(

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

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby juliej » Wed Jun 29, 2016 2:22 pm

Dr. K's office is (understandably) reluctant to speak on her behalf, but in my experience if explain you're from out-of-state and would like to reduce the length of your visit, she will accommodate you as much as possible. I have received HAI pump treatment + systemic chemo treatment on the same day at 53rd street - no problem. I've even flown in on a red-eye from the west coast, met with Dr. K and had treatment in the morning, and flew back that night on another red-eye. But that schedule depends a lot on airline connections - and your ability to sleep on a plane :D

You'll see her again after you're released from the hospital, right? Ask her then and mention you're trying to reduce the time you have to be away from work. I don't think you'll have a problem.
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

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

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby mariane » Wed Jun 29, 2016 3:26 pm

I currently receive systemic and FUDR chemo. I fly from Atlanta. I usually fly late in the evening on Sunday to NY, have an appointment for labs, meeting with Dr K scheduled early in the morning. I get chemo around 1-2 p.m. and I am ready to go on Monday evening. The chemo bottle is disposable. I get disconnected at local oncology center in Atlanta and they take care of it. I get my HAI pump flash 2 weeks later in Atlanta and systemic as well. I usually ask to schedule my scans on Sunday afternoon and they reviewed by Monday morning so I can fly back on Monday evening. Dr K's team is very supportive and I have never experienced any problems. You can communicate with them via patient's portal as well. I sometimes asked for rescheduling appointments when they were in the middle of the week by email. Everybody was very understanding. They called me back within a day or 2 after asking Dr K permission which was always granted.

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!

Cfbiff
Posts: 50
Joined: Mon Jan 18, 2016 12:04 am

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby Cfbiff » Thu Jun 30, 2016 5:48 am

Great news, thank you!
7/15 dx colon cancer stage 4, mets to liver age 46
Cea 1700
8/15 folfox
1/16 cea 47
2/7 began consults with Dr Kemeny about liver pump.
2/16 FOLFIRI /started
3/7 laparoscopy showed no cancer in abdomen
3/2016 began folfirinox and asked again about hai pump
5/16 CEA 186
6/16. colon resection and HAI pump, 15/33 lymph nodes, margins clear
7/16 FUDR began. CEA 300+
8/16 FUDR 2nd treatment and FOLFIRI systemic restart. CEA 400+
9/6 added mitomycin to pump.
10/5 CEA coming down

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby midlifemom » Thu Jun 30, 2016 10:18 am

I echo the others. Got fudr and systemic same day.

Mariane - where do you get Sunday afternoon scans?
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby radnyc » Thu Jun 30, 2016 10:50 am

HAI Liver Pump therapy is unfortunately not something any cancer hospital can do. It has been perfected at MSK in NYC for decades and that would be the only place I would go to have it done. Some patients have actually had to move here semi-permanently during their treatment, I'm lucky that I live in the city.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
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 2011
HAI Pump removed Dec 2015

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby kandj » Thu Jun 30, 2016 4:05 pm

DH has done the fly in Saturday night, scan Sunday, and then appointments and treatment Monday. But, he usually does Tuesday night fly in, early Wednesday appointments, trmt in the morning, fly back out that night. As others have said, the chemo bottle is disposable and not an issue to get through security. DH usually doesn't work the two days hes on the FUDR due to exhaustion. He has every other Friday off, so we try to tie trmt days to that so it affects his schedule less. If it is a month he needs a scan, he tries to get a later afternoon one on a Tuesday and flies out Monday night or Tuesday morning.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

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

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby mariane » Thu Jun 30, 2016 9:32 pm

midlifemom wrote:I echo the others. Got fudr and systemic same day.

Mariane - where do you get Sunday afternoon scans?


Hi Midlifemom,

I usually get my scans in the hospital (67th and York Ave). All the nurses and technicians know me by now :)
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!

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby midlifemom » Thu Jun 30, 2016 9:37 pm

Thx Mariane
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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

Re: HAI pump treatments for out of town folks...need input from other Kemeny kids

Postby Badass » Fri Jul 01, 2016 2:22 pm

I live across the state (in Rochester). I had my systemic chemo done at my home hospital with my local oncologist and just went to NYC for scans and HAI pump fill. Worked great.


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)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 116 guests