My recent surgery & update on MSK HAI pump (long)

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VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

My recent surgery & update on MSK HAI pump (long)

Postby VeggieLvr » Wed Jun 27, 2018 12:23 pm

Hi everyone, I wanted to give an overview of my recent surgery at MSK, which included installation of the HAI pump. This will be a long post, but I want to give as much information as possible. I've broken it into sections to hopefully make it easier to read.

My surgery was for both liver resection and HAI pump installation. Implanting the HAI pump also involves removing the gall bladder. I was in the hospital for five days.

About The Pump
Let me start by sharing information about the pump. I had feared that with Johnson & Johnson discontinuing the production of the pump that I, and other candidates for it, would never get one. Fortunately that is not the case! What they are doing now is using Medtronic pumps, and are in the process of training staff at all locations how to access it. (Link for more info on this pump: https://www.mskcc.org/cancer-care/patie ... usion-pump)

Surgery
Surgery lasted about 3-4 hours, and afterwards they kept me in the recovery area until about 4 am, when they moved me into a room. My surgeon wasn't able to resect all my liver mets, so I will need another resection surgery at some point. However, he said that the ones he did resect had shrunken considerably from chemo, to the point that some of them were difficult to find! He also said he did not find any mets in the surrounding areas. This was great news, especially since after my first surgery, my hemicolectomy in March, multiple mets were found in the omentum and lymph nodes.

Recovery
The first day after surgery they get you out of bed, and encourage you to walk as soon as you are able. Honestly, it hurt a lot, though the pain meds do help. I had a little handheld device with a button that was connected to my drip that I could press whenever I wanted more meds, I believe it was every 15 minutes I could press it. (You can't overdo it, if you press it too much it basically locks you out and then disperses the meds based on the appropriate time frame.) After a few days they take you off that and give you meds in pill form.

My belly was quite swollen with fluids after the surgery, but not terribly - I gained about 6 pounds of fluid that gradually decreased each day. My appetite was non-existent for the first few days and slowly improved. MSK has surprisingly good food for a hospital as well, I'm vegan and I was impressed that I had quite a few options on their menu! It's room service, so you call and order whenever you want. Your family can also bring food from home for you and the nurses will put it in the fridge for you (just made sure it's labeled!).

Pump Study
Three days after surgery they took me for a pump study - first they took me to a room with a huge machine that took multiple pictures which I believe was to check placement of the pump, then they access the pump (I was told I was the fifth person they've accessed with this pump so far!), then they take you to another room for a CT scan via a machine that goes around the whole abdomen. During the pump access portion, I was terrified - they told me initially accessing it is a little trickier with this one, but they got it on the first shot. The whole time there was another Dr. there who was providing support and reassurance, which was wonderful for me and helped a lot.

A few hours after the study a nurse from chemo came to my room and filled my pump with saline and heparin. She also coded it into an electronic device that it was filled and how much it was filled with (20cc). Both times the pump was accessed, I did feel the pinch of the needle, but the worse of it was whenever they pressed on my belly since it was so sore and tender from surgery.

Surgeon and MSK
My surgeon, Dr. D'Angelica, was amazing, both before and after the surgery. My husband said that when surgery was done, he and my mom were taken to a private room where they had to wait for about 20 minutes (nerve-wracking!), and as soon as Dr. D'Angelica walked in he immediately told them everything went great. He then spent a lot of time with them going over everything and answering any questions they had.

The procedure was done a week ago and I am still in pain, quite a bit to be honest, but it's manageable. The abdominal swelling is minimal now. I am someone who hates taking pain meds but I am taking them now and will be for at least several more days if not longer. I'm continuing to walk as much as I can - it's difficult and though I can lay down flat, can't stand straight yet. What I try to do is take my meds (10 mg oxycodone), walk for a bit once they've kicked in, then rest.

This is the most difficult surgery I've had yet, and my most challenging recovery. My pump was implanted on the left side and I feel more pain there, and have to be careful of how I move. But the experience at MSK was wonderful. Everyone there really does care, the doctors, the surgeons, the nurses, everyone. I can't say enough good things about them, they are all truly amazing.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

zephyr
Posts: 110
Joined: Thu Aug 18, 2016 7:31 am

Re: My recent surgery & update on MSK HAI pump (long)

Postby zephyr » Wed Jun 27, 2018 1:10 pm

I've been thinking about you, and I was so happy to see you posting again.
Oct-2009 Stage I CC
Jun-2016 Stage 3 (T3 N1c)
Jun-2016 Surgery
Jul-2016 PET: Probable Stage 4 with inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza; beg in Oct-2017, receiving Vitamin C & Quercetin by IV every week
Jun-2018 Taking a chemo break; preparing for surgery
Aug-18 Recovering from German laser surgery on R lung, 8 mets removed plus middle lobe

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: My recent surgery & update on MSK HAI pump (long)

Postby VeggieLvr » Wed Jun 27, 2018 5:23 pm

Thank you zephyr! :) If I wasn't feeling so crappy I would have posted sooner (plus the pain meds make me a bit loopy). I hope all is well with you!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

User avatar
juliej
Posts: 2859
Joined: Thu Aug 05, 2010 12:59 pm

Re: My recent surgery & update on MSK HAI pump (long)

Postby juliej » Wed Jun 27, 2018 6:12 pm

Glad to hear you're home and on the road to recovery! :D

My surgery was 7 hours and involved multiple wedge resections of my liver, implantation of an HAI pump, and removal of my primary rectal tumor. I lost a lot of weight so don't be surprised if the number on the scale drops radically after you lose the post-surgical fluid. Just make sure to eat lots of protein. It will help you regrow your liver, regain your strength, and prevent any muscle loss.

Also, don't be surprised if you have weird food cravings as you regrow your liver! All I wanted to eat was salmon, sweet potatoes, yams, pumpkin, etc. One day I looked at my plate and realized everything was orange-colored! :D It took me nearly three months to get back to my regular weight.

Speaking of food, though, isn't the food service at MSK the best? You can order off the menu any time of the day. I frequently had Italian ices in the evening.

You're doing the perfect thing with your pain meds. Always take them before going on a walk. That works like a charm to get you up and moving. Rest is important too so take a nap after you come back inside.

I don't know the size of your surgical incision (mine was stem-to-stern with 54 staples!), but as it heals, make sure to stretch it a bit by lying flat on your back. That prevents any puckering of the scar tissue and any future posture problems. When it's healed up, use ScarAway Strips, which are silicone scar treatment sheets. They smooth and flatten the scar, greatly reducing its appearance. My abdominal scar is very hard to see now. Here is a link so you know what the product looks like:

https://www.amazon.com/ScarAway-Professional-Silicone-Treatment-Packaging/dp/B001AJ4L1E?th=1

Congratulations on a successful surgery!!! Your pain level will start reducing soon and you'll feel a bit more recovered in a few weeks. When you have a low moment, just tell yourself you're on your way to NED. It will perk you right up!

Take care,
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 7/13/2018, CEA<1

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: My recent surgery & update on MSK HAI pump (long)

Postby VeggieLvr » Thu Jun 28, 2018 9:34 am

juliej wrote:Glad to hear you're home and on the road to recovery! :D

My surgery was 7 hours and involved multiple wedge resections of my liver, implantation of an HAI pump, and removal of my primary rectal tumor. I lost a lot of weight so don't be surprised if the number on the scale drops radically after you lose the post-surgical fluid. Just make sure to eat lots of protein. It will help you regrow your liver, regain your strength, and prevent any muscle loss.

Also, don't be surprised if you have weird food cravings as you regrow your liver! All I wanted to eat was salmon, sweet potatoes, yams, pumpkin, etc. One day I looked at my plate and realized everything was orange-colored! :D It took me nearly three months to get back to my regular weight.

Speaking of food, though, isn't the food service at MSK the best? You can order off the menu any time of the day. I frequently had Italian ices in the evening.


Thank you juliej! I appreciate your advice. Your surgery was longer than mine for sure so now I feel like I have no right to complain! :D I haven't weighed myself yet but I am sure I have dropped a bit of weight, glad to know it's normal and not to be alarmed by it (I have a tough time keeping weight on since my diagnosis). I'm all about the protein so great tip! I even bought protein powders and add a bunch of that when I make smoothies. Fortunately my appetite is coming back so I'm able to eat more than I was in the beginning of my recovery. I've had some weird food cravings too! And I definitely agree the food service at MSK is amazing, I love how you can order whenever you want. Plus the fact that they even had decent veggie options was awesome.

juliej wrote:You're doing the perfect thing with your pain meds. Always take them before going on a walk. That works like a charm to get you up and moving. Rest is important too so take a nap after you come back inside.

I don't know the size of your surgical incision (mine was stem-to-stern with 54 staples!), but as it heals, make sure to stretch it a bit by lying flat on your back. That prevents any puckering of the scar tissue and any future posture problems. When it's healed up, use ScarAway Strips, which are silicone scar treatment sheets. They smooth and flatten the scar, greatly reducing its appearance. My abdominal scar is very hard to see now. Here is a link so you know what the product looks like:

https://www.amazon.com/ScarAway-Professional-Silicone-Treatment-Packaging/dp/B001AJ4L1E?th=1


I bought those strips, it may even have been on your advice from other posts I've read! I'm glad to hear your scar is hard to see now, that's very reassuring. My incision is pretty big but I haven't counted all the staples accurately, but I think there are about 30. I was nervous about getting them out but my mom and my friend who had a c-section said it's not bad at all so that's reassuring.

juliej wrote:Congratulations on a successful surgery!!! Your pain level will start reducing soon and you'll feel a bit more recovered in a few weeks. When you have a low moment, just tell yourself you're on your way to NED. It will perk you right up!


Thank you so much!! When I start to feel frustrated I also tell myself that at least this surgery is behind me, no more anticipation and fear of the unknown, just recovery which will get better every day. :)
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

lakeswim
Posts: 85
Joined: Sat Mar 31, 2018 9:37 am

Re: My recent surgery & update on MSK HAI pump (long)

Postby lakeswim » Thu Jun 28, 2018 12:52 pm

I haven't been on here in a while but I was happy to see you are doing well.
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: My recent surgery & update on MSK HAI pump (long)

Postby VeggieLvr » Thu Jun 28, 2018 4:43 pm

Thank you lakeswim! :) I hope you are doing well.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

Foggyocean
Posts: 15
Joined: Wed Aug 30, 2017 12:31 pm

Re: My recent surgery & update on MSK HAI pump (long)

Postby Foggyocean » Fri Jun 29, 2018 9:14 am

Congrats on the successful surgery, VeggieLvr! I hope the rest of your recovery goes smoothly!
45 year old caregiver to Husband
DX 3/16: 3cm Adenocarcinoma of sigmoid colon, Grade 2
4/16: colon resection; Stage IIIc (at diagnosis), 6/42 nodes, CEA: 11, MSS, KRAS
5/16: Baseline CT & MRI show 4 liver mets, CEA: 99
5/16-1/17: 4x FOLFOX, liver resect, 8x FOLFOX
8/17: 1 liver met, CEA 46.5
10/17: HAI pump; FUDR + Folfiri Oct-Apr '18 w/Dr. K @MSK
1/18: SBRT to liver met; CURRENTLY NED CEA 0.8

User avatar
Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: My recent surgery & update on MSK HAI pump (long)

Postby Robino1 » Fri Jun 29, 2018 9:15 am

Very good news on the surgery being successful! May your pain lessen each day. :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Rikimaroo
Posts: 135
Joined: Tue Dec 20, 2016 8:48 pm

Re: My recent surgery & update on MSK HAI pump (long)

Postby Rikimaroo » Fri Jun 29, 2018 9:27 am

Awesome news. The surgery is always tough because my liver resection was a cross cut on my abdomen and it hurt for a few days. It got better around the sixth day when I got discharged, and I drained for like six weeks afterwards from the cut.

Glad you got your surgery done. Stay strong you got this!!

Riki
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: My recent surgery & update on MSK HAI pump (long)

Postby VeggieLvr » Fri Jun 29, 2018 5:35 pm

Foggyocean, Robino1, Rikimaroo - Thank you so much for your encouragement and well wished! It really means a lot :)
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)


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