MSK patients with HAI pump - prep for Dr K meeting

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mpbser
Posts: 927
Joined: Wed Apr 19, 2017 11:52 am

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby mpbser » Sat Jan 12, 2019 8:47 am

I can't remember if I have said this before, but Dr. Kemeny saved the life of the father of a friend of ours. He was diagnosed about ten years ago and the other day was his five year anniversary of the being NED. When he was diagnosed, he was considered terminal with his liver and peritoneum riddled with cancer. He had the pump implanted and if it wasn't for the fact that he had Dr. Kemeny as his oncologist, we would be saying it was a "miracle" that he has been essentially cured. :)
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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ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby ginabeewell » Sat Jan 12, 2019 6:37 pm

cartech78 wrote:I see your in the HAI pump people group now! I thought it might be you. Good luck with your appointment. I stay at the residence inn by Marriot on east 48th st. Its a couple blicks walk from MSK and they offer discounts to MSK patients. Its a nice place.


I'm not in the group but my husband Per is! I think you commented on his thread there. Good luck on Monday and I'm hoping you've primed the pump for me on NW pump maintenance. : )
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

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ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby ginabeewell » Sat Jan 12, 2019 6:39 pm

mpbser wrote:Here are some tips about MSK that we learned yesterday by experience:

Don't have MRIs done at the 55th Street Imaging Center unless 1) you are a small person and 2) you have no problem with claustrophobia. They only have one MRI machine and it's the smallest model ever. (My husband could not fit in it and they had to send us up to Memorial Hospital on York Avenue.)

Get to know the jitney which can take you around to and from the various buildings: https://www.mskcc.org/locations/visitin ... nt-shuttle


Good tips! Luckily I am a small person (and getting smaller on chemo) and haven't had any MRIs yet, just CT scans. Maybe that will change at MSk.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

cartech78
Posts: 65
Joined: Thu Oct 25, 2018 6:22 pm

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby cartech78 » Sat Jan 12, 2019 7:21 pm

ginabeewell wrote:
cartech78 wrote:I see your in the HAI pump people group now! I thought it might be you. Good luck with your appointment. I stay at the residence inn by Marriot on east 48th st. Its a couple blicks walk from MSK and they offer discounts to MSK patients. Its a nice place.


I'm not in the group but my husband Per is! I think you commented on his thread there. Good luck on Monday and I'm hoping you've primed the pump for me on NW pump maintenance. : )

Im definitely priming them to have Northwestern service the pump and I will be pushing the issue even harder come Monday with Dr.Kingham, the surgeon that im meeting with. I will let you know how it goes. Have fun in NewYork, you’re in the middle of all the action where you guys are staying! My wife and I actually have had a great time on our trips so far! NewYork ar Christmas was really something to see.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.

mpbser
Posts: 927
Joined: Wed Apr 19, 2017 11:52 am

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby mpbser » Sun Jan 13, 2019 9:04 am

Here's another tip about MSK: It can be a bit challenging in terms of comfort while waiting a long while in the waiting areas. For one, at the Imaging Center on 55th St and at Memorial Hospital on York Ave there are signs all over saying "No Eating" so forget about snacking or having a packaged sandwich or something at those locations. Water wasn't even available there :/

I don't know if there were those signs at Rockefeller Pavillion on East 53rd St where Dr. Kemeny's office is. There, you will find water, coffee, tea, saltines and graham cracker stations, and I don't recall the signs so I think it's okay to snack there.
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

heiders33
Posts: 347
Joined: Sat Nov 04, 2017 11:08 am

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby heiders33 » Sun Jan 13, 2019 9:05 am

Yes, you can eat at the 53rd St location. I've eaten entire meals, bagels with lots of cream cheese, etc. I am wary of anything that might be smelly, but as far as I know there are no rules about eating and not eating.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT

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juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby juliej » Mon Jan 14, 2019 4:12 pm

mpbser wrote:Here are some tips about MSK that we learned yesterday by experience:

Don't have MRIs done at the 55th Street Imaging Center unless 1) you are a small person and 2) you have no problem with claustrophobia. They only have one MRI machine and it's the smallest model ever. (My husband could not fit in it and they had to send us up to Memorial Hospital on York Avenue.)

Get to know the jitney which can take you around to and from the various buildings: https://www.mskcc.org/locations/visitin ... nt-shuttle

I feel bad I didn't warn you about the 55th Street center. It's a very small place with limited equipment. Next time ask specifically for 53rd or the hospital, whichever you prefer.

The jitney is wonderful! I use it to zap around all the time. Sometimes I see my surgeons riding it too, especially if they are heading from the hospital after morning rounds to their offices at 53rd street. The jitney drivers are fearless too! The driver on my last trip yelled at an SUV that was double-parked and said he had "PATIENTS ON BOARD WHO NEEDED TO GET TO APPOINTMENTS SO MOVE IT NOW, BUDDY!" :D :D :D
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 9/23/2019, CEA<1

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby hiker » Mon Jan 14, 2019 4:23 pm

Being from out of town and wanting to be in and out of the city all in one day, I do scans all over the place. I've done them at 53rd, 55th, 67th and even the women's breast cancer place on 66th! :shock: Kinda unnerving being a dude. They will find a place for you.

Those bus drivers are super nice, but completely insane. They're constantly yelling at people and laying on their horns - like everyone else driving in Manhattan. I had one mow down some traffic cones that happened to be in his way.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

kandj
Posts: 260
Joined: Sun Sep 27, 2015 11:29 am

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby kandj » Mon Jan 14, 2019 5:21 pm

The Helmsleybis great when you are staying more than a few days. They have full kitchens so you don’t have to eat out. The Marriott at 53rd is cheapest in the winter. Ask to get blood work done on Sunday when you have scans (assuming you are having Monday appointments). MAkes Monday mornings easier. DH has the codman pump and his oncologists office services it. He’s on the glycerol now so that is done in NYC when he’s there. Dr. K is quick and curt. She has a lot of patients to see so don’t expect her to small talk. I think she was in the room for about 90 seconds today for hubby’s appt. but that also meant he us nothing new, so that was good!
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
chemo break, nothing seen on scans 6/19 or 8/19 Hopeful

mpbser
Posts: 927
Joined: Wed Apr 19, 2017 11:52 am

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby mpbser » Mon Jan 14, 2019 6:52 pm

My husband was totally freaked out about 55th Street with the lack of privacy, people walking around in the lobby with their gowns and undies. I don't think he'd like to go there for non-MRI scans but if we are in a pinch, I guess he might have to just deal with it.

Here's a question: why did 53rd Street require labs before his CT-angiogram but West Harrison didn't draw before his PET and Memorial didn't draw before his MRI? He was told at 53rd Street (our very first appointment) that labs are always taken before all scans, but that's patently false.
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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ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby ginabeewell » Wed Jan 16, 2019 2:38 pm

Done with my consult. It was good if efficient. Dr K knew what we were after and got straight to the point of discussing treatment. I just had chemo Monday; she wants me to do two more rounds (which would bring me to 8 total) and then come back for a scan to determine if I am ready for a resection and pump placement on Feb 20.

She agreed with my NW doc that the systemic chemo looked like it could get me to resectable.

She also confirmed that I could get my flushes at Northwestern which is great.

If all goes well that means I could be in surgery by mid March.

I liked her and was impressed at the efficiency of the operation. I'm glad we did our research and knew what to expect. I found the support staff and fellow very warm and human, and Dr Kemeny gave me a great sense of confidence.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

cartech78
Posts: 65
Joined: Thu Oct 25, 2018 6:22 pm

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby cartech78 » Wed Jan 16, 2019 6:51 pm

ginabeewell wrote:Done with my consult. It was good if efficient. Dr K knew what we were after and got straight to the point of discussing treatment. I just had chemo Monday; she wants me to do two more rounds (which would bring me to 8 total) and then come back for a scan to determine if I am ready for a resection and pump placement on Feb 20.

She agreed with my NW doc that the systemic chemo looked like it could get me to resectable.

She also confirmed that I could get my flushes at Northwestern which is great.

If all goes well that means I could be in surgery by mid March.

I liked her and was impressed at the efficiency of the operation. I'm glad we did our research and knew what to expect. I found the support staff and fellow very warm and human, and Dr Kemeny gave me a great sense of confidence.
Dr. Kemeny is great! I replied to your husband on Facebook the other day about my appointment with the surgeon but he basically didn’t know much on how it worked with someone else servicing the pump. He told me it was up to Dr.Kemeny and if she had someone she was comfortable with at Northwestern. Im glad you were able to verify it with her again today as it hasn’t been brought up in my last two appointments! I am curious to know though exactly how much experience Northwestern has with the new pump. MSK told me once they remove the pump they can’t reinstall it again. With that being said i will probably have MSK due all the maintenance the first few times so i can get a feel for what its supposed to look like. My pre surgery test is on the 23 of February and if everything is good it looks like surgery will be the following week. Interesting enough, Dr Kemeny told me the surgeons didn’t feel like i was resectable currently but i was a good candidate for the pump. When i met with Dr.Kingham, my surgeon he said oh no, were going in and doing a partial resection and installing the pump. He said after a few pump treatments were gonna go back in and remove the middle section of your liver! I was shocked! He thinks he can get me to NED in 5 to 7 months! Totally unexpected!!! You will learn the most when you get to the step of meeting with your surgeon!
From your last post it seems like she has you on the exact same path i am on with coming back for scans and then presenting you to the surgeons!
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.

User avatar
juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby juliej » Wed Jan 16, 2019 8:02 pm

ginabeewell wrote:Done with my consult. It was good if efficient. Dr K knew what we were after and got straight to the point of discussing treatment. I just had chemo Monday; she wants me to do two more rounds (which would bring me to 8 total) and then come back for a scan to determine if I am ready for a resection and pump placement on Feb 20.

She agreed with my NW doc that the systemic chemo looked like it could get me to resectable.

She also confirmed that I could get my flushes at Northwestern which is great.

If all goes well that means I could be in surgery by mid March.

I liked her and was impressed at the efficiency of the operation. I'm glad we did our research and knew what to expect. I found the support staff and fellow very warm and human, and Dr Kemeny gave me a great sense of confidence.

Dr K is very good at getting to the point! :D

It sounds like everything went perfectly. Stay strong and get through the last 2 rounds of chemo. Tell yourself that every day you're getting closer to having a resection and pump placement. I'm so excited for you!!!

I'll be in NYC in March for a follow-up appointment so maybe we'll see each other at the 53rd street location!

Hugs to you!
Juliej
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 9/23/2019, CEA<1

User avatar
juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby juliej » Wed Jan 16, 2019 8:03 pm

cartech78 wrote:My pre surgery test is on the 23 of February and if everything is good it looks like surgery will be the following week. Interesting enough, Dr Kemeny told me the surgeons didn’t feel like i was resectable currently but i was a good candidate for the pump. When i met with Dr.Kingham, my surgeon he said oh no, were going in and doing a partial resection and installing the pump. He said after a few pump treatments were gonna go back in and remove the middle section of your liver! I was shocked! He thinks he can get me to NED in 5 to 7 months! Totally unexpected!!!

Cartech78, Dr K consults with her team (which includes Kingham, D'Angelica, and others) so I'm sure she was pleased he thought you were ready for a partial resection! Congratulations!

The pre-surgical test is interesting. They run lots of tests (including heart tests) and ask you tons of questions, including the usual "what do you think this surgery is for?" -- which cracks me up for some reason. :D The results are sent to the surgeon the same day so he can make a determination.

Everyone at MSK Hospital will take very good care of you before, during, and after the surgery. The meals are gourmet quality, not typical hospital stuff. You can order from the menu anytime of the day (from about 7:30 am to 9:00 pm). I often ordered a mid-afternoon snack of carrot cake and hot tea. There are no assigned "mealtimes."

Walking is the single most important thing you can do after your surgery. It helps start the healing process in the body so you can make a fast recovery. I learned that 14 laps around the ward there equals 1 mile. Break the mile up into several short walks a day, taking it slow and easy at first.

Tip: Take an extension cord with you so you can use it to charge your phone, iPad, etc. Sometimes the outlets are in odd places and it's handy to be able to get it closer to your bed.

Hope this helps!
Juliej
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 9/23/2019, CEA<1

cartech78
Posts: 65
Joined: Thu Oct 25, 2018 6:22 pm

Re: MSK patients with HAI pump - prep for Dr K meeting

Postby cartech78 » Wed Jan 16, 2019 8:51 pm

juliej wrote:
cartech78 wrote:My pre surgery test is on the 23 of February and if everything is good it looks like surgery will be the following week. Interesting enough, Dr Kemeny told me the surgeons didn’t feel like i was resectable currently but i was a good candidate for the pump. When i met with Dr.Kingham, my surgeon he said oh no, were going in and doing a partial resection and installing the pump. He said after a few pump treatments were gonna go back in and remove the middle section of your liver! I was shocked! He thinks he can get me to NED in 5 to 7 months! Totally unexpected!!!

Cartech78, Dr K consults with her team (which includes Kingham, D'Angelica, and others) so I'm sure she was pleased he thought you were ready for a partial resection! Congratulations!
The pre-surgical test is interesting. They run lots of tests (including heart tests) and ask you tons of questions, including the usual "what do you think this surgery is for?" -- which cracks me up for some reason. :D The results are sent to the surgeon the same day so he can make a determination.

Everyone at MSK Hospital will take very good care of you before, during, and after the surgery. The meals are gourmet quality, not typical hospital stuff. You can order from the menu anytime of the day (from about 7:30 am to 9:00 pm). I often ordered a mid-afternoon snack of carrot cake and hot tea. There are no assigned "mealtimes."

Walking is the single most important thing you can do after your surgery. It helps start the healing process in the body so you can make a fast recovery. I learned that 14 laps around the ward there equals 1 mile. Break the mile up into several short walks a day, taking it slow and easy at first.

Tip: Take an extension cord with you so you can use it to charge your phone, iPad, etc. Sometimes the outlets are in odd places and it's handy to be able to get it closer to your bed.

Hope this helps!
Juliej

Thanks Julie! Im nervous about the surgery but happy it’s possible. I did find it strange how it went down. Dr.Kemeny had me call her the day after my appointment with her so she could tell me what the surgeons said. She said they could only do the pump at this time. Im just curious to know how that opioion changed from the original meeting with the surgeons. At the end of the day im not gonna look a gift horse in the mouth if you know what i mean. :) . It could of been that Dr.Kingham wasn’t at that meeting as it was 4 or 5 days before Christmas. Overall im just curious at the process.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.


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