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HAI pump

menright's picture
menright
Posts: 258
Joined: Oct 2008

To all those who have had metastasis to the liver and had the HAI pump installed, I would love to hear your stories.

I am now a candidate for a HAI pump. I will be visiting Sloan Kettering to review this option in the coming weeks. I am eager to learn much about this option so that I can make my appointment the most beneficial. Some questions now are:

Do they ever install the HAI pump without first doing a liver resection?
What happens if the pump leaks once inside the body? I heard of this occurring.
Does the pump stay in for life?
Why is it considered experimental?

I am sure there will be more questions to come. Any personal stories and advice will be greatly appreciated.

I will be seeing Dr. Jarnigan at MSK on May 25th.

Thanks and wish me luck!

Mike

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

I had that procedure done in Sept of 04 by Dr Jarnigan! He's the guy you want doing this. Is Dr Kemeny your Onc by any chance?
To answer what I can...
*Do they ever install the HAI pump without first doing a liver resection?
I do not see why they would go in there two times. I had my liver resection done and pump installed (and colon resected and gallbladder and lymph nodes out) all at the same time by Dr. Jarnigan and Dr. Wiseman.

*What happens if the pump leaks once inside the body? I heard of this occurring.
I never head of this happening but I didn't research it much at all. This was the plan that was presented to me and I was OK with it. I did not have any leaks.

*Does the pump stay in for life?
It can be removed after a few years BUT once it's out, it can not be put in again due to scar tissue. I still have mine in. Every 8 weeks or so they have to refill it with an inert liquid to keep it primed so it won't dry out.

*Why is it considered experimental?
Beats me, they have been doing it for years.

Just so you know, the spot is tender for quite a while. There would be times where I'd be sitting next to my wife on the couch and her elbow would brush against it and I'd jump! Now, it's no big deal at all. It's about the size of a hockey puck. Here's a photo of it if you care to see it.

I used the pump for about 6 months, it has eliminated the cancer in my liver and I've not had a recurrence at all. It did the job.
Good Luck,
If you have questions, email me on this site.
-phil

Marauders99's picture
Marauders99
Posts: 22
Joined: Feb 2010

Phil,
Great pic and thanks for the advice regarding MSK.I had a consult with Dr. Chung there last week and the HAI pump was one of the many options we discussed.

Scott

abrub's picture
abrub
Posts: 2073
Joined: Mar 2010

Scott,
Dr. Chung has a fabulous rep (and he's my dr, too!) He's very responsive to questions - you can always leave messages for him - he gets back to you.

Good luck with all of this.

Marauders99's picture
Marauders99
Posts: 22
Joined: Feb 2010

I'd like to hear about your experiences with Dr. Chung. Do you mind if I send you a PM?

Scott

abrub's picture
abrub
Posts: 2073
Joined: Mar 2010

I saw your message and responded.

Alice

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Phil,
How does it get power to run??? I have also noticed that no one on the board talks about the chemo embolazation that they did to me. Lots of changes.

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

Well, it's NOTHING like that at all. It works (from what I remember) based on many things like internal body temp, atmospheric pressure and gas from my bowels. OK, I made up the last part. I was told that I that while I was getting the chemo thru the pump, I had to notify them if I was going to take an airplane trip, go scuba diving or hot tubbing since the pressure would change if I was underwater or traveling by jet. And the hot tub would raise my internal temp. All of those factors helped to determine how much chemo was administered.

menright's picture
menright
Posts: 258
Joined: Oct 2008

Phil:

My new oncologist will be Dr. Kemeny. I just found and will be visiting with her today?

Any comments or advice? My last oncologist was talented but not very helpful.

wish me luck.

Mike

mom_2_3
Posts: 962
Joined: Nov 2008

Mike,

she is also my doctor. Don't expect a warm relationship with her. She usually doesn't stay too long during appts. She can be brusque. But I have found her to be brilliant and that is all that matters to me when it comes to an oncologist. I hope you have a good meeting with her and please keep us posted on your plans. Met a woman on Monday while I was there that just finished liver resection after being told she was inoperable. She had the pump put in 6 months ago in order to get to operability. She will start her adjuvant chemo in a month but is doing great. And, this woman told me that Dr K had hugged her once but I didn't believe it... ;)

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

Mom 2-3, Get outta town! A hug? Are you sure the woman didn't say that someone tried to MUG her? It is NYC after all :-)

I have gotten her to smile and almost laugh so miracles can happen...

Mike, she's not warm and fuzzy but she's not mean either. She doesn't mince words and is brilliant and that is what you are after. Her staff id great, Trish is a wonderful assistant Doctor and Sandra is great as her main nurse. Usually you will meet with Sandra, then Trish, then Dr Kemeny in that order. Many times I will go over the scans visually with her when something is going on. If it business as usual I do not ask to see the scans.

It never hurts to have questions written down which you probably do anyway. There have been times where I've used a small portable MP3 player/recorder that I have to record the meeting so I can go over it later. I did that more in the beginning, at this point I rarely do it anymore. I got over the shock of cancer a long time ago.

Hope you get great news at the meeting. Please do keep us posted.
-phil

mom_2_3
Posts: 962
Joined: Nov 2008

Phil,

I did ask the woman to clarify two times the word "hug" and also confirmed our definitions of the word were the same. So there was definitely physical contact involved. I think in 5 years if I am clear then I am going to give Dr K a kiss (whether she likes it or not....)

all the best,
Amy

menright's picture
menright
Posts: 258
Joined: Oct 2008

I really had to force myself on Dr. Kemeny to get my questions answered. She did so up until she politely kicked me out of her office.

Are wait time long at MSK? I had an appointment with Dr. Jarnigan at 1:00pm on Tuesday and did not see him until 3:00pm for exactly 5 minutes.

Then on Wednesday, I had an appointment with Dr. Kemeny at 3:00pm and did not see here until 5:30.

Is the high demand because they are that good or is it simply big city (20M people) and too few doctors?

I hope I am not signing on to multiple hour waits for each appointment. Comments????

Mike

abrub's picture
abrub
Posts: 2073
Joined: Mar 2010

They work in their own time zone. Be prepared to wait. And wait. However, if you want to go down to the deli next door or wander the bookstore, or something in the area, the front desk will take your cell number and call you when you need to come back.

Did I mention that you'll have to wait?

My surgeon there (Dr. Paty) is notorious for his extremely long waits (2-3+ hours....), but no one ever complains because he's well worth the wait. My onc (Dr. Chung) is not as bad - only about an hour wait.

At least the waiting rooms are comfortable, have snacks, computers, etc.

Bring a good book with you.

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Mike- Best of Luck on this procedure if you decide to do it.

I was at Sloan Kettering in March for a liver resection and my room mate was having the pump installed, with no liver resection.

Experimental? My surgeon told me that this therapy is just not widley used- the drug itself is cheap, compared to traditional chemo and chemo keeps hospital doors open. Oncology Docs don't study this procedure as much in school so there is a shortage of knowledge and experience. It's expensive to administer (placement, refilling the pump etc) vs cost of drug itself. I beleive this procedure was pioneered at Sloan, so they continue to offer this and of course have lots and lots of experience.

Peggy

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

My Onc was one of the pioneers of this protocol. I can see putting it in to be a big deal but to administer the drug they just stick a needle into the diaphragm of the pump and fill it up or remove what isn't used and refill it. What was great about it was that it administered the chemo directly to the area that needed it, not systemically like most chemo is given.

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

My pump was installed in the same surgery in which I had colon resection. My liver was not resectable at that time. The HAI pump helped make my liver tumors resectable. My understanding is that while there are sometimes complications with the HAI pump, the incidence is less if the surgeon is very experienced in the surgery installing the pump. I believe this is why the pump is not widely used; there is not wide depth of experience with the surgery. Also, the chemo to the liver is fairly intense and probably can cause side effects to the liver to occur more quickly but I believe this is offset by the greater opportunity of attaining resection.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

I have a question about the HAI pump- I guess it wouldn't do me a great deal of good at the moment, because in addition to the liver recurrence (4 tumors at present), I still have "innumerable" lung nodules. The lung nodules are all subcentimeter and I have no symptoms whatsoever from them, thankfully. I guess that's why my onc hasn't mentioned the HAI pump- I honestly don't know if he even does it, since I've never discussed it w/ him, but I need more than just having chemo pumped directly into my liver. I'm just wondering if anyone knows if there's a similar type pump that can work on lung tumors also, or separately from the liver. Let me know if you know of or hear of such thing.
Phil, did you have the HAI pump while also getting other systemic chemo as well? I think you also have (had?) lung nodules as well, but i can't remember for sure.

Lisa

mom_2_3
Posts: 962
Joined: Nov 2008

Lisa,

During the HAI chemo period one is typically also receiving systemic chemo, albeit not the same week. A usual schedule is:

Day 1: systemic
Day 15: systemic
Day 22: pump

Day 45: systemic
Day 59: systemic
Day 66: pump

So one would have systemic chemo every 2 and every 3 weeks.

With regard to having lung mets...I have met people that had lung mets that still had the HAI pump installed so lung mets didn't preclude HAI.

I have never heard of an "HAI-like" pump for the lungs.

Amy

Msboop15's picture
Msboop15
Posts: 78
Joined: Apr 2019

I read your bio and noticed that you have taken a juicing and exercise approach. I exercise but I am wondering if I need to change my approach. What is it that you find that helps you? I know nothing about juicing so just wondering if you have any suggestions as to where to start. 

I am new here so wasn’t exactly sure how to get the question to you other than this way. I hope to hear back from you! Thanks!

Trubrit's picture
Trubrit
Posts: 4753
Joined: Jan 2013

I do hope Mom23 sees your post and answers, becasue this thread is nine years old. 

If you don't get a reply, you could send her a message via CSN. I am sure she will be happy to respond.

Tru

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

Lisa -

I had exactly the same thought - is there a treatment as intense for lung mets. I believe that there is not. Since the liver tumors used to be fatal so much more quickly, it appears to me that treatment of lung mets was not the same level of priority. Also, the nature of lung tissue is different and lungs do not regenerate in any way. Of course, I am not objective since I have lung mets but I believe that options for treatment of lung mets are definitely needed. Small, exact radiation and RFA are great but I have been told that too many treatment modalities can cause the lungs to stop functioning. It is frustrating.

mom_2_3
Posts: 962
Joined: Nov 2008

Mike,

Phil and ADKer answered your questions already but thought I would also chime in with my perspective (I can't keep quiet!!!).

Do they ever install the HAI pump without first doing a liver resection?

They sure do. I have met a number of people in the waiting room that had the pump installed with the express purpose of becoming operable in the liver. I met one particular gentleman who had >50 mets in his liver and traveled from Ohio to get the pump. After about 6 months on the pump he was able to have his liver resection. Another person I know was also inoperable and just completed the second stage of a two-part liver resection. She is currently NED (keeping in mind Phil's thread about NED).

What happens if the pump leaks once inside the body? I heard of this occurring.

I honestly have not heard of the pump leaking inside the body. Most certainly expertise of the doctor "installing" the pump is of critical importance as there can be issues with placement. I believe MSK installs about 300 per year. No other hospital can even come close to that. I know of one person who went to MD Anderson and was told that MDA could also place the pump for her but that they only did a couple a year there. After the pump is placed you will have a test to determine that the pump is functioning properly. To do that test (it will be done while you are in the hospital, about 1-2 days after surgery) you are put in something that looks very similar to a CT machine and the HAI pump is accessed via a needle through your lower abdomen (just like your chest port) and they inject a radioactive substance into the HAI port. In the scan they can see that there are no leaks to the other areas of the body (outside the liver) and they can see that the liquid is dispersing properly throughout your liver.

Does the pump stay in for life?

I know others who have had the pump removed. It does not stay in for life but as Phil said, once it is removed it cannot go back in. I plan (hopefully) on keeping mine in for 5 years. Provided I have no recurrence in that time I will have it removed. If I do have a recurrence then it can be used again for treatment.

Why is it considered experimental?

I don't know why it is considered experimental. I believe that Dr K has done numerous studies showing both pre-surgical as well as adjuvant treatment success with the HAI pump. The problem with it is that it is difficult to administer. Dr K will constantly change the dosage of the FUDR based upon blood tests and to my understanding, this is something she does almost like a second nature. Other oncologists aren't as quick to evaluate such information and manage an HAI pump like she can. As a result they can see less patients and make less $$$$. Dr K does nothing but colon cancer oncology. I met an oncologist that did all cancers and I wondered how he could possibly keep up on all the drugs and technologies for colon cancer in addition to all the other varieties. I don't think 30% of all oncologists would even know what RFA or chemo-embolization or HIPEC are even are...

I hope you have a good meeting with Dr Jarnigan. He did surgery on a very good friend of mine, resecting her liver and placing an HAI pump for adjuvant treatment. I had a different surgeon at MSK.

I know this isn't about me but I just got back my 15 month scan (15 months from surgery) and it was all clear still. My oncologist doesn't get too excited as she says 2 years is a better barometer (and even then we know recurrences can happen) but I am glad that I have had clean scans for that period of time. My liver surgeon told me that recurrence in the liver will happen for 70% of people after a liver resection. He said that with the HAI pump the recurrence rate for that same group of people is 50%. I like the increase in those odds.

If you need anything else Mike or have any other questions, please let me know. Don't forget that as soon as you book surgery dates you should call Hope Lodge in NYC and book lodging for your wife's stay while you are in Memorial Hospital and for your recovery period until you you are allowed to return home to CT.

All the best Mike!!!!
Amy

menright's picture
menright
Posts: 258
Joined: Oct 2008

Thanks for all the stories, advice and answers. I am far better prepared for my appointment. It has been encouraging to learn the success of these pumps.

Mike

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Does anyone know if anyone/place does this pump beside Sloan in New York? So far, that is the only place I heard of it being done.

Traveling to New York, I'm assuming at least once once a month could be a pretty tough thing to do for some.

Thanks - Tina

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Mike,

I've been wondering about you. I'm glad you're going to a good doctor and have a plan. I'll be praying for excellent results for you, my friend.

*hugs*
Gail

Emmett20
Posts: 5
Joined: Apr 2019

I know you can also use the hai pump as adjuvant therapy.  That is what I am using it for when I have my surgery at the National Institues of Health this summer.

Butt's picture
Butt
Posts: 269
Joined: May 2018

Mark Bloomston in Fort Myers, FL is an excellent internationally recognized surgeon who does pumps.Great stuff, too. 

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

This post is practically 9 years old. I don't have a list of places that do the HAI pumps but I know I've been the specimen for at least 5 visiting doctors/nurses where they show how to refill the old Codman pumps. It's being used more and more because of its effectiveness. Dr. Kemeny has a 10-year survival rate somewhere between 60-70%. I just celebrated 15 years in February. Pretty f-ing good.

Unfortunately, due to the lack of profits that Johnson & Johnson were getting on the Codman pump, they've decided to STOP manufacturing it. They are now using a more complex pump that needs to be refilled every 2 weeks instead of every 2 months when it's not being used for administering drugs. Additionally, when people get a CT scan (or other types of scans) they need someone on the premises to "restart" the pump since it's electronic. The old one had NO moving parts.

We certainly don't want to disappoint J&J's shareholders, do we? 

Butt's picture
Butt
Posts: 269
Joined: May 2018

I know Bloomston in Fort Myers now does a new pump and I know it got disconnected.I have an old one. My mets went into lungs in a few months. I believe it is not that uncommon. Honestly, I don t see accomplishing that long surviving rate. I wish I could.... Butt.

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