UPDATE: New here -- questions about HAI pump

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: New here -- questions about HAI pump

Postby Robino1 » Fri Sep 01, 2017 6:55 pm

juliej wrote:
Robino1 wrote:Is the pump permanent?

No, it's not permanent. It's about the size of a hockey puck and made out of titanium. It's really amazing technology. It doesn't require batteries; it uses your own body temperature to release a slow flow of chemo to your liver. The best part is there are no side effects since the chemo goes directly to the liver, bypassing the rest of the body altogether. The pump is usually filled with a concentrated form of 5FU, a much stronger dose than the rest of the body can handle.

After the liver is clear of tumors, the pump is filled with saline instead of chemo, and then eventually with glycerol, which is thicker, and allows an even longer time between pump refills. After 5 years, it is removed. I'm planning to keep mine as a paperweight! :D

Hope this helps!
Juliej


It does. Thank you! So it's just for the liver. I'm very happy to hear you are NED :)
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

gfpiv
Posts: 157
Joined: Tue May 25, 2010 9:24 pm

Re: New here -- questions about HAI pump

Postby gfpiv » Fri Sep 01, 2017 11:46 pm

Hi, just responding to a comment from Mariane...I have no idea if Dr. Kemeny is or isn't taking new patients right now; I was assigned to the very capable care of Dr. R seven(!) years ago, and I never even asked about Dr. K. Just wanted to make clear that the docs at MSK all work well together as a team, and Dr. K is certainly not the only one that can prescribe HAI treatment.
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

Foggyocean
Posts: 17
Joined: Wed Aug 30, 2017 12:31 pm

Re: New here -- questions about HAI pump

Postby Foggyocean » Sun Sep 03, 2017 9:49 am

juliej wrote:
Foggyocean wrote:Wow, everyone, thank you SO much for your replies!! It sounds like it is quite doable and really, a 4 hour car ride is nothing compared to what some of you have gone through. Like all of you know, the sitting around and waiting is the excruciating part so after double checking with my husband I called MSK yesterday and got the ball rolling! I just need to gather all his records from MGH now and they will send them up to Dr. K's office to look over. I'm hoping the turnaround is somewhat quick as we are meeting with his MGH docs next week to talk about options. Interestingly, I asked his onc last week about the HAI pump and he said they are going to start doing it at MGH "soon"...wonderful news for those down the road. He also said he was involved in a clinical trial with HAI pumps at MGH 15-20 years ago and he honestly didn't know why they stopped doing them. He didn't think my husband "needed" a pump at this point, I think he thinks of them as something to use when there are multiple inoperable mets to the liver, but we are hoping to avoid that and avoid another recurrence.

Again, thank you for all the information you have all provided. I have learned so much on this board and you all are truly saving lives by sharing your knowledge and experiences.

Foggyocean, make sure you mention that you're meeting with his MGH docs next week to talk about options. Dr. K's office is very good about expediting appointments when necessary.

Also, his onc's opinion about the pump only being used for multiple inoperable mets to the liver isn't exactly right. In my case, my liver was resected at the same times as the pump was implanted. The pump worked as an "insurance policy" to decrease my odds of recurrence. The pump isn't used just to get patients to resection -- although it works like a dream for many in that position.

Hope this helps!
Juliej


That is great to hear Juliej, thank you! I'm sure his MGH docs are going to be ready to move forward so the quicker we can get an appointment with Dr. K and her surgeon the better we will feel.

I finished gathering all his records from MGH and I was told that it can take up to 5 business days to hear back from Dr. K's office about setting up an appointment. Sounds like it will be worth it for me to give them a call once I know they get all the info?

Thanks all!
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-Mar '18 w/Dr. K @MSK
1/18: SBRT to liver met; CURRENTLY NED CEA < 1

Foggyocean
Posts: 17
Joined: Wed Aug 30, 2017 12:31 pm

Re: New here -- questions about HAI pump

Postby Foggyocean » Sun Sep 03, 2017 9:52 am

gfpiv wrote:Hi, just responding to a comment from Mariane...I have no idea if Dr. Kemeny is or isn't taking new patients right now; I was assigned to the very capable care of Dr. R seven(!) years ago, and I never even asked about Dr. K. Just wanted to make clear that the docs at MSK all work well together as a team, and Dr. K is certainly not the only one that can prescribe HAI treatment.


What is Dr. R's full name? If we can't get in to see Dr. K, I will request him/her.
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-Mar '18 w/Dr. K @MSK
1/18: SBRT to liver met; CURRENTLY NED CEA < 1

Foggyocean
Posts: 17
Joined: Wed Aug 30, 2017 12:31 pm

UPDATE: New here -- questions about HAI pump

Postby Foggyocean » Mon Sep 18, 2017 10:36 am

Just a quick update...thank you for everyone who shared their stories with me...I got an appointment for my husband with Dr. K at MSKCC and we will see her this week! I am very excited to hear what she says about my husband's case. After his MRI it turns out that what they thought was 1 bigger liver met is actually 2 smaller mets...both close to the Inferior Vena Cava. His MGH surgeon feels confident he can remove them, but wants him to do some chemo first to try to shrink them a bit to give him some more room. He started FOLFIRI last week and they wanted to add Avastin too but I asked that they hold off on that until we meet with Dr. K and they said that wasn't a problem. So MGH's plan is 4-5 rounds of chemo, liver surgery, 7-8 more rounds. Similar to what he did last time (with FOLFOX). Our plan right now though, is to most likely go with whatever Dr. K and her team recommends. I am interested to see if it will be any different.

As for the HAI pump being offered at MGH, I have an update. His chemo nurse did some digging while we were there because she had heard some talk of the HAI pump coming to MGH and it turns out several nurses were at MSKCC this summer receiving training on the pump. Also, there is an MGH doctor who did a fellowship at MSKCC and is in the process of ordering everything needed to start implanting the pumps at MGH...as soon as a month from now! Great news for future patients! Again, I think we will probably stick with Dr. K at this point but it is great to know that there will be people trained in this area close by.
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-Mar '18 w/Dr. K @MSK
1/18: SBRT to liver met; CURRENTLY NED CEA < 1

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: UPDATE: New here -- questions about HAI pump

Postby mpbser » Mon Sep 18, 2017 3:23 pm

This is great news for future MGH patients. Too bad that my husband starts chemo soon and won't be a candidate to start out with the HAI pump. His liver surgeon did his fellowship at MSK, so I am pretty sure I know who is working on this.
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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