HAI pump without Dr. K at MSK

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juliej
Posts: 2878
Joined: Thu Aug 05, 2010 12:59 pm

Re: HAI pump without Dr. K at MSK

Postby juliej » Tue Nov 13, 2018 8:05 pm

Spazzyjanet wrote:I've been told not to look too far ahead, but reading stories on here give me hope still of long-term life. Is that false hope?

"False hope" is a term that's thrown around a lot, especially if you're a Stage IV CRC patient. The fact is many Stage IV CRC patients are living longer lives and a higher percentage of them are achieving a complete cure. Of course, much depends on your biology (genetics), treatment center (the more progressive, the better), and your individual response to treatment. I had tumor in ALL lobes of my liver and one in each lung and I'm still here! :D

However, remember that YOU are your own best advocate. Find out what can be done for your case (not the statistical norm) and then pursue it like your life depends on it (because it does!).

Spazzyjanet wrote:The Cleveland Clinic is an option. However it still isn't MSK. And I can tell you that my husband will not be on board with traveling to NYC from Ohio every two months. We only have so much time off work to spare.

I traveled twice that distance to see Dr. K. I know of some patients who came from your area who did it all in a day, arriving in the morning to get chemo in the pump (and often a CT scan the same morning) and flying back that afternoon without even spending a night. Sure it was a long day, but if it's important to minimize your time off, that might work for you.

To put it bluntly though, you have only one real chance to get this right so try not to base it on your work schedules. Cancer doesn't give a damn about your work life. You have bigger issues right now.

That said, this is your decision so if you feel at peace going with local treatment, go for it!

As an aside, there are two other places I know of that offer HAI pump treatment: OHSU in Portland, Oregon and City of Hope in Los Angeles, California. Just thought I'd mention that in case you have family or friends there.

Hope this helps!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 9/14/2018, CEA<1

martd
Posts: 61
Joined: Tue Nov 21, 2017 3:48 pm

Re: HAI pump without Dr. K at MSK

Postby martd » Tue Nov 13, 2018 9:53 pm

With a stage 4 cancer diagnosis you will qualify for SSI disability, they have a compassionate allowance program that streamlines the process. It will take a few months before checks start rolling in so if this is something that will work for you start the process soon. Also does you employer offer short term disability? Look into your husband's employment also this may be a qualifying situation that approves him for short term disability.

Dan
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

sworla
Posts: 1
Joined: Mon Jul 17, 2017 4:49 pm

Re: HAI pump without Dr. K at MSK

Postby sworla » Wed Nov 14, 2018 9:41 am

Hi Juliej,
I will be having surgery for the HAI pump next week at MSK. I will be also be traveling there every other week for treatment. I plan on flying to NYC in the morning, receive treatment and fly home that evening. I know it is going to be a very long day and very challenging, but I am up for the challenge. I am a little nervous of the unknown at this time, but in time I hope I get on somewhat of a schedule.
Diagnosed May 2017 Stage IV 53 yrs old
Numerous liver mets - inoperable
Colon resection May 2017
FOLFOX June - December 2017 12 rounds
Xeloda and Avastin January 2018
Stopped Xeloda after 2 rounds due to hand foot syndrome
February - September 2018 5FU and Avastin
August - September 2018 FOLFIRI 4 rounds (failed)
October 2018 CEA increasing
October 2018 consultation at MSK for HAI pump

hiker
Posts: 84
Joined: Thu Aug 09, 2018 10:15 am

Re: HAI pump without Dr. K at MSK

Postby hiker » Wed Nov 14, 2018 11:02 am

Hey sworla,

I either drive 4 hours to NYC or drive 1 1/2 hrs, hop the train for 1 - 1 1/2 hrs, and then spend 20-30 minutes in the subway system or walk 30 minutes to get to MSK. MSK has been FANTASTIC about scheduling all my appointments in one day. There have only been two occasions where they couldn't get me all done in one day - for one I stayed at the Helmsley overnight, the other I just traveled back and forth two days in a row. I usually get my scans first thing in the morning, then labwork around noon, see Dr. K a little after noon, and finish up the day in the treatment suite. I head out around 5:30am and get home around 9pm (although one time I did get home at almost midnight). It's one long day, but being a country boy I want to limit my time in the city. If I can do it, you can.

Good luck.

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

User avatar
juliej
Posts: 2878
Joined: Thu Aug 05, 2010 12:59 pm

Re: HAI pump without Dr. K at MSK

Postby juliej » Wed Nov 14, 2018 5:59 pm

sworla wrote:Hi Juliej,
I will be having surgery for the HAI pump next week at MSK. I will be also be traveling there every other week for treatment. I plan on flying to NYC in the morning, receive treatment and fly home that evening. I know it is going to be a very long day and very challenging, but I am up for the challenge. I am a little nervous of the unknown at this time, but in time I hope I get on somewhat of a schedule.

Sworla, hiker is right. MSK will bend over backwards to accommodate the schedule of anyone who comes in from outside the city. They will take very good care of you. Just let them know you are anxious about making your flight or whatever, and they will bump you up or do whatever is necessary. You are going to the best doctor in the world for liver mets. She is up to the challenge, believe me!

After a few times you will get to know "Nick." He's the guy who greets you when you come in the door at 53rd. No matter how scared I was, Nick was there to make sure I started my day with optimism. His regular line to me is, "Do good up there!" as I head towards the elevators.

And congratulations on joining the "pump" club! Maybe I'll see you at MSK one day!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 9/14/2018, CEA<1

chadwick1
Posts: 14
Joined: Sat Oct 13, 2018 9:04 am

Re: HAI pump without Dr. K at MSK

Postby chadwick1 » Wed Nov 14, 2018 8:59 pm

Ha hiker I wonder if you and I are in the same region, I also have a 4 hour drive to MSK (and have stayed at the Helmsley on occasion). I can join the chorus and concur they’ve been wonderful about accommodating my distance by moving things around, grouping appointments together, etc. Despite the long hours and miles, it’s been SO worth it!
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3N1bM0) no genetic indicators, normal CEA
7/2017 radiation + 5FU
10/2017 LAR w/ temp loop ileo. clear margins, 2/33 nodes
11/2017-3/2018 FOLFOX, 9 rounds
2/2018 clear CT
4/2018 ileo reversal
10/2018 CT shows suspicious mass in liver (1.7 cm), and in lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, clear margins. re-scan lung in January

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: HAI pump without Dr. K at MSK

Postby Spazzyjanet » Sat Nov 17, 2018 9:24 am

These days have been harder as the news has gotten rougher. I am now waking each day and experiencing what it feels to know that you don't get to grow old. Hopefully Peri mets don't come along to join this story as well.

I have an appointment at the Cleveland Clinic with an oncologist who apparently worked a bit with Dr. K. I'm starting there.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

mymom
Posts: 1258
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: HAI pump without Dr. K at MSK

Postby mymom » Sat Nov 17, 2018 1:57 pm

from what I understand, it is about sticking with who you are with who is NOT able to do the HAI Pump and doing the HAI Pump. I would send your records to MSK asap. Call their main number today and they can tell you how to send your records for Dr K to review. Dr. K has to review if you are a candidate. You don't have to make a choice to go to MSK now, you need to know if they will take you first. When they say yes, then you can make the decision if you want to do it AND they may be able to work with a local oncologist on some things to lessen travel time. But first step is getting your records there.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16 NED

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: HAI pump without Dr. K at MSK

Postby Spazzyjanet » Wed Nov 21, 2018 4:04 am

Okay, so I am coming around, but a few questions. 1) How often does the pump need to be filled. I had a doctor at the Cleveland Clinic tell me that it was every 2 weeks, but I thought it was longer than that? 2) I'm going in for an MRI of my Peritoneum in early December to determine if there is current involvement (a surgeon found and removed a single nodule in September). Should I wait until after those results are back?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

ginabeewell
Posts: 35
Joined: Wed Oct 24, 2018 10:30 am

Re: HAI pump without Dr. K at MSK

Postby ginabeewell » Wed Nov 21, 2018 5:49 pm

Personally I would just get started and request an appointment. By the time they can get you in, you may be in early December anyway. I'm planning to ask my doctor for a referral when I see her next week. That will be ahead of my CT scan, but I figure by the time I get an appointment it will likely be done.

I will be five or six cycles in before I see her I am guessing. My CEA is dropping so I am not feeling like I am wasting time in the meantime.

I do think the pump needs to be filled every two weeks but it sounds like you can do that locally every other time.
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
10/15/18 CEA 913
11/12/18 CEA 49

cartech78
Posts: 45
Joined: Thu Oct 25, 2018 6:22 pm

Re: HAI pump without Dr. K at MSK

Postby cartech78 » Wed Nov 21, 2018 6:24 pm

Spazzyjanet wrote:Okay, so I am coming around, but a few questions. 1) How often does the pump need to be filled. I had a doctor at the Cleveland Clinic tell me that it was every 2 weeks, but I thought it was longer than that? 2) I'm going in for an MRI of my Peritoneum in early December to determine if there is current involvement (a surgeon found and removed a single nodule in September). Should I wait until after those results are back?

From what I was told by dr.K , The pump gets filled with chemo for two weeks then its imparitive it gets drained of remaining Chemo and at that time some other fluid( not Chemo) is put in for 2 weeks. Then the cycle repeats. What you wanna look into is if another hospital close to you will work with Dr.K and you during those off weeks( like the Cleveland clinic). I was told I would have to travel once a month to NewYork. The old style pump could go longer which would of been ideal. It will be hard but if it works for you it will be the best decision you ever made.
If and when I get the pump I will try to do it in one day like another poster suggested. MSK also has info on there website about lodging if you decide to stay a day or two. The ressidence inn hotel is within walking distance to the place you will see Dr k at. They provide a nice discount for MSK patients. There are other hotels that do as well. They even have info on airfare help if needed. Even if you have to go every two weeks your life is worth it!
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 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

cartech78
Posts: 45
Joined: Thu Oct 25, 2018 6:22 pm

Re: HAI pump without Dr. K at MSK

Postby cartech78 » Wed Nov 21, 2018 6:33 pm

ginabeewell wrote:Personally I would just get started and request an appointment. By the time they can get you in, you may be in early December anyway. I'm planning to ask my doctor for a referral when I see her next week. That will be ahead of my CT scan, but I figure by the time I get an appointment it will likely be done.

I will be five or six cycles in before I see her I am guessing. My CEA is dropping so I am not feeling like I am wasting time in the meantime.

I do think the pump needs to be filled every two weeks but it sounds like you can do that locally every other time.

Good for you Gina! Im happy to hear you considering an opinion and inquiring about the pump with her. A piece of advice I will offer you is when you get those CT scans make sure they are of chest, abdomen. And pelvis. Make sure you get the CD of those scans as they will require you to bring them.
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 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.


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