MSK patients with HAI pump - prep for Dr K meeting

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ginabeewell
Posts: 120
Joined: Wed Oct 24, 2018 10:30 am

MSK patients with HAI pump - prep for Dr K meeting

Postby ginabeewell » Mon Jan 07, 2019 10:19 am

We have our meeting with Dr Kemeney at MSK on Wednesday. We have been advised it is our longest meeting with her so want to be smart with questions.

If you got an HAI pump at MSK and have it serviced elsewhere, how is that working for you? How often are you traveling versus handling things locally? How well does Dr K work with the local cancer team? I love my Northwestern oncologist (she is totally available to her patients, even encouraging us to text her with anything) and am a little worried about what her role becomes if we move forward with Dr K.
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
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (round #6), FOLFOX hold the Vectibix (for 1 round)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow

hiker
Posts: 137
Joined: Thu Aug 09, 2018 10:15 am

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

Postby hiker » Mon Jan 07, 2019 12:50 pm

Hey gina,

Congratulations on being seen by Dr. Kemeny. I've been a patient of hers since May 2017 and can't say enough good things about her and MSK as a whole. I go to NYC (3 1/2 - 4 hrs) or one of the MSK satellite offices in NJ (2+ hrs) to get my pump serviced since the closest non-MSK facility that will service it is 2 hrs away. Dr. Kemeny's group will work with a local oncologist - she did that for me when she wanted me to get several rounds of chemo prior to my liver resection surgery. But I don't know if there are any facilities close to you that can service an HAI pump - but that's not the point of my reply.

I really just want to emphasize that treating stage iv cancer isn't about liking or disliking one's oncologist - this is survival. I have known too many people who were taken by cancer because they liked their oncologist and didn't want to go to a top cancer center for whatever reason. A young lady that I worked with and the brother of a lady I work with passed away between Thanksgiving and Christmas because they liked their local oncologists. If Dr. Kemeny agrees to treat you, run with it. Treatment is only temporary and you can get through this even if there's a bunch of travel involved.

As far as things to ask Dr. Kemeny in your first meeting? You may not get much of a chance if your first meeting is anything like mine. My wife and I were sitting there after seeing the nurse waiting for Dr. K to come in. She came in and told us that she and Dr. D'Angelica were going to do their best to cure me of cancer. My wife starting crying and I almost fell out of the chair (I won't go through all the details, you can read some of my prior posts to get an idea of what we had been through prior to going to MSK). After that, I really didn't care what else she had to say. I just wanted to get the ball rolling on ridding my body of cancer.

I wish you well.

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

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ginabeewell
Posts: 120
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Mon Jan 07, 2019 1:00 pm

Thanks Hiker. I am at a top cancer center now - and one that can install and administer a pump - but I think I am trying to bear in mind exactly what you said: this is about survival and not feelings. I was overt with my oncologist that I know Dr Kemeney has more experience with the pump than anyone at Northwestern and therefore wanted to work with her. She was open to that, as was the surgeon who oversees the pump program here, who apparently trained under Dr K.

I have heard they will work with a local oncologist to service it, but that you still need to fly to NY regularly. Just trying to wrap my head on what that looks like.

The office just called to push me to NEXT week. So I have a bit more time to prep! Also she approved me to restart chemo next Monday, which suggests she may be aligned to my doctor's reco to install the pump at the point of liver resection.
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
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (round #6), FOLFOX hold the Vectibix (for 1 round)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow

hiker
Posts: 137
Joined: Thu Aug 09, 2018 10:15 am

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

Postby hiker » Mon Jan 07, 2019 1:20 pm

If you're at a top cancer center with HAI pump experience, then you're starting out 100 times better than me. The oncologists/surgeons in my neck of the woods were going to put me on the chemo till death plan.

Dr. K will not allow anyone else to fill the HAI pump with chemo. So while you're in active treatment, you would definitely need to head to NYC for that. My HAI treatment was only once every 5 weeks. You could most likely do NYC once every 5 weeks then after HAI chemo is done (which she will only do for 6 months) you would probably only need to go back to NYC once every 12 weeks for scans and to see her - everything else should be able to get done locally.

Just kill the cancer and get better.

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
ginabeewell
Posts: 120
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Mon Jan 07, 2019 1:32 pm

Once every four or five weeks is definitely doable for me. I was worried about having to go every two weeks which would be more challenging.

I can do a day trip from Chicago, or I have plenty of hotel points built up that I can leverage if need be. We splurged points on a room at the Ritz next week because why not? But not exactly a sustainable model for six months of treatment!

I was shocked how all three of my first oncologists had the attitude of "I'll try to keep you alive for two years." My current oncologist was the first one to talk to me about actually curing the cancer. I think that's why I have felt like I wanted to keep her involved, even as Dr Kemeney takes the reins of treatment.
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
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (round #6), FOLFOX hold the Vectibix (for 1 round)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow

mpbser
Posts: 759
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Mon Jan 07, 2019 2:33 pm

As of this fall, when the study began, there are very few local oncologists who Dr. Kemeny will coordinate with for servicing newly implanted pumps. The current pumps (the Medtronic SynchroMed II with Codman catheter, an "adaptation" undergoing clinical trial at MSK and soon at NIH [also available at Spectrum Health and Duke]) have a very high learning curve and very, very, very few facilities have the skills to fill them with saline which has to be done once a month. If my husband does decide to join this study and have MSK implant the pump, we have no choice but to go there for the servicing.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

hiker
Posts: 137
Joined: Thu Aug 09, 2018 10:15 am

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

Postby hiker » Mon Jan 07, 2019 2:34 pm

Sounds like you've got this under control. I'm a country boy who dislikes everything about cities and the thought of going to NYC almost made me not seek treatment at MSK. So if I can do this, anyone can. Although if I ever lose my mind and decide to move to Manhattan, I could open my own tour guide business since I know more about the place now than I ever cared to.

Not sure what the Ritz costs, but I'm sure it's outta my league. My wife and kids did stay in the city the week I was in the hospital for my liver resection (made possible by our incredible church family who provided the funds) and my wife and I have stayed there one other time. The Helmsley Medical Tower, which is two blocks from MSK main hospital, has apartments with full kitchens that are reasonable for NYC (I believe it was less than $350/night).

The worst part of going into the city for us is parking. Not every garage will take a full-size truck and when they do...you pay. Since you're flying, that won't be an issue.

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
ginabeewell
Posts: 120
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Mon Jan 07, 2019 4:12 pm

The Ritz would be out of my league too if it weren't for hotel points! And NY is so expensive that it wasn't that many more points to stay there than the other options.

Good to have a referral for a place with a kitchen for when I would have to be there for longer, thanks for that!

Looks like MSK is accommodating for those who want to do day trips which I would probably wind up doing unless I had work to do in NY. I travel for work to NY a few times a year (and to other places more frequently), so the points we get for air and hotel will go to good use! My mother in law also lives in Greenwich CT, which we could use as a free home base for longer stays - although the emotional cost is not insubstantial. ; )

heiders33
Posts: 336
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Mon Jan 07, 2019 8:09 pm

If you get the Medtronic pump, you will have to get it filled every two weeks. While in treatment, that’s chemo one week, and two weeks later saline, then repeat. But when treatment is over, you have to get it filled with saline every two weeks while you have it. I bet Northwestern will learn how to service it soon, since they already do HAI. Just something to keep in mind in the long term.
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

User avatar
ginabeewell
Posts: 120
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Mon Jan 07, 2019 10:27 pm

Northwestern is saying they can place a pump for me, so I assume that means they can service it now?! Question is whether or not Dr Kemeney will be comfortable with that.
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
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (round #6), FOLFOX hold the Vectibix (for 1 round)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow

mpbser
Posts: 759
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Jan 08, 2019 6:38 am

I think she would be because luckily Northwestern appears to have sufficient experience with the "new" pumps unlike practically everywhere else. I say this because I have heard about someone else going through this at Northwestern and I believe he or she was able to make the arrangements.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7

User avatar
juliej
Posts: 2923
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Tue Jan 08, 2019 6:49 pm

ginabeewell wrote:Once every four or five weeks is definitely doable for me. I was worried about having to go every two weeks which would be more challenging.

I can do a day trip from Chicago, or I have plenty of hotel points built up that I can leverage if need be. We splurged points on a room at the Ritz next week because why not? But not exactly a sustainable model for six months of treatment!

I was shocked how all three of my first oncologists had the attitude of "I'll try to keep you alive for two years." My current oncologist was the first one to talk to me about actually curing the cancer. I think that's why I have felt like I wanted to keep her involved, even as Dr Kemeney takes the reins of treatment.

My local (west coast) oncologist had no problem working with Dr. Kemeny. You'll get chemo in the pump every month in NYC, and the other times you'll get saline, which can be injected locally. It was understood in my cancer center that Dr. K would be directing the treatment so they followed her orders.

If you have hotel points you can use at the Marriott chain, there's a Courtyard at 866 3rd Ave that's just around the corner from Dr. Kemeny's office. Make all your CT scan appointments at that location too and you can have it pretty easy. Helmsley is nice too but it involves two subway lines to get to Dr. K's office (or a taxi, but I'm a subway girl!).

I needed to stay in NYC for several months due to multiple surgeries and treatment, so for awhile I rented a short-term apartment in midtown. I know of other patients who've rented Airbnb apartments too. Hiker and I can give you a ton of tips about getting around, restaurants, etc.

However, if Northwestern can implant the pump this might all be moot advice! Are you going to Dr. Merkow there?

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 2/1/2019, CEA<1

User avatar
ginabeewell
Posts: 120
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Tue Jan 08, 2019 10:00 pm

juliej wrote:My local (west coast) oncologist had no problem working with Dr. Kemeny. You'll get chemo in the pump every month in NYC, and the other times you'll get saline, which can be injected locally. It was understood in my cancer center that Dr. K would be directing the treatment so they followed her orders.

If you have hotel points you can use at the Marriott chain, there's a Courtyard at 866 3rd Ave that's just around the corner from Dr. Kemeny's office. Make all your CT scan appointments at that location too and you can have it pretty easy. Helmsley is nice too but it involves two subway lines to get to Dr. K's office (or a taxi, but I'm a subway girl!).

I needed to stay in NYC for several months due to multiple surgeries and treatment, so for awhile I rented a short-term apartment in midtown. I know of other patients who've rented Airbnb apartments too. Hiker and I can give you a ton of tips about getting around, restaurants, etc.

However, if Northwestern can implant the pump this might all be moot advice! Are you going to Dr. Merkow there?

Juliej


Thanks for this info, super helpful!

Yes, Dr Merkow is the surgeon I met with who said that he worked regularly with Dr Kemeney and "practically had her on speed dial." It sounds like they have coordinated in the past, which I am hoping will ease things along. I think NW would prefer to do the pump themselves, but I feel better having MSK do it given the level of experience they have with it relative to Northwestern, and didn't get much push back on that. (All that said, Dr Merkow was great, and I would not hesitate to have him work with me surgically if it were not related to the pump, my primary care doctor said the surgical team at NW is top notch, and I walked away from our meeting super impressed with him.) I also met with the radiologist at NW who is apparently world-renowned. But we put the breaks on radiation discussion once Dr Merkow told us that we couldn't do the pump post radiation. Prior to this, NW's reco for me was radiation while I had my chemo break. I am glad I pushed to ensure the pump continued to be part of the dialogue.

Love any tips / tricks / recos you might have - even if it just good places to eat around Dr K's office! My husband grew up in Rye and lived for several years in Manhattan and then Brooklyn, so I know he is anxious to visit some of his old haunts. Silver lining I guess! The points we have are for Starwood or Marriott so will definitely check out the Courtyard, thanks for that recommendation. : )
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
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (round #6), FOLFOX hold the Vectibix (for 1 round)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow

cartech78
Posts: 54
Joined: Thu Oct 25, 2018 6:22 pm

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

Postby cartech78 » Fri Jan 11, 2019 11:48 pm

ginabeewell wrote:
juliej wrote:My local (west coast) oncologist had no problem working with Dr. Kemeny. You'll get chemo in the pump every month in NYC, and the other times you'll get saline, which can be injected locally. It was understood in my cancer center that Dr. K would be directing the treatment so they followed her orders.

If you have hotel points you can use at the Marriott chain, there's a Courtyard at 866 3rd Ave that's just around the corner from Dr. Kemeny's office. Make all your CT scan appointments at that location too and you can have it pretty easy. Helmsley is nice too but it involves two subway lines to get to Dr. K's office (or a taxi, but I'm a subway girl!).

I needed to stay in NYC for several months due to multiple surgeries and treatment, so for awhile I rented a short-term apartment in midtown. I know of other patients who've rented Airbnb apartments too. Hiker and I can give you a ton of tips about getting around, restaurants, etc.

However, if Northwestern can implant the pump this might all be moot advice! Are you going to Dr. Merkow there?

Juliej


Thanks for this info, super helpful!

Yes, Dr Merkow is the surgeon I met with who said that he worked regularly with Dr Kemeney and "practically had her on speed dial." It sounds like they have coordinated in the past, which I am hoping will ease things along. I think NW would prefer to do the pump themselves, but I feel better having MSK do it given the level of experience they have with it relative to Northwestern, and didn't get much push back on that. (All that said, Dr Merkow was great, and I would not hesitate to have him work with me surgically if it were not related to the pump, my primary care doctor said the surgical team at NW is top notch, and I walked away from our meeting super impressed with him.) I also met with the radiologist at NW who is apparently world-renowned. But we put the breaks on radiation discussion once Dr Merkow told us that we couldn't do the pump post radiation. Prior to this, NW's reco for me was radiation while I had my chemo break. I am glad I pushed to ensure the pump continued to be part of the dialogue.

Love any tips / tricks / recos you might have - even if it just good places to eat around Dr K's office! My husband grew up in Rye and lived for several years in Manhattan and then Brooklyn, so I know he is anxious to visit some of his old haunts. Silver lining I guess! The points we have are for Starwood or Marriott so will definitely check out the Courtyard, thanks for that recommendation. : )

The seafire grill, Patsy’s Pizza. ess-a bagel. The peking duck for chinese. All with in walking distance of MSK 53rd street location.
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.
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.

mpbser
Posts: 759
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 8:31 am

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
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7


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