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Surgery and HAI pump coming soon...HELP!!!

Jim462's picture
Jim462
Posts: 10
Joined: Dec 2020

Greetings...I'm so glad that I found this site! 

I was diagnosed June of 2019.  I'm in NJ so I wound up at MSK for treatment.  Long story short I had Chemo followed by chemo/radiation then a resection in August, 2020.  This left me with a temporary illiostomy.  I had the reversal a little over a month ago in early November.  All seemed to be going well until I was readmitted for a hematoma Shortly after the reversal surgery.  During a CT-scan to treat the hematoma they found a spot in my liver.  Scans show a single METS that is eligible for resection.

I'm scheduled for a liver resection and the insertion of the HAI pump Right after the new year. This will be followed by 4 months of Chemo (FOLFIRI and FUDR5).  

I considered other options but the pump seems like the most aggressive path to punch this cancer in the mouth.  This site has provided me with the most meaningful information regarding the HAI treatment path.  All of my other information has come from sifting through published studies and listening over and over to recordings of my Dr appointments.  

Thanks to the awesome people on this site I have what I believe is a good sense of the real-world efficacy of this treatment.  I'm still super-scared, I know the journey will be tough but the stories I found here are inspiring.  

One outstanding question is, how does the pump impact ones lifestyle?  How active can you be with it?  Like many of you I live a pretty active life.  I workout every day, I do lots of work around my property and I race motorcycles as well.  My oncologist told me she was concerned about the impact the pump would have on my lifestyle.  

I know that I will have to give up some activity, e.g. martial arts and motorcycle racing, but I'm wondering how active can one be with the pump?

Any help or advice on living With the pump or getting through the treatment will be greatly appreciated!!

Thanks and Happy New Year to all.

Trubrit's picture
Trubrit
Posts: 5513
Joined: Jan 2013

It really isn't the happening place everyone wants to be at; but it really IS  a great place to be when your in the fight. 

I can't help you with you questions about the HAI pump, but I am sure others here will be on board soon. 

It is good that you only have the one met. 

Did they tell you if an Ablation was an option?  Just saying because it worked on my one met, and I have been NED - No Evidence of Disease - every since; which is six, going on seven years now. 

Whatever path you choose, it sounds like you are in it with a positive outlook, and that is a great help. 

Tru

Jim462's picture
Jim462
Posts: 10
Joined: Dec 2020

I'm fortunate to have what appears to be a single met and I'm fortunate that I had the complication from my last surgery which led to the discovery months earlier Than might have been.

I mentioned ablation but they said surgery is what they feel is the best path.  I do have the option to forgo the pump.  If I were to choose the no pump path I have received different opinions on treatment.  MSK basically said surgery and the pump or just surgery.  A second opinion offered surgery and systemic Chemo as an option.  I have not reconciled the difference in approach.

I really hope to,gain some insight into the pump as my surgery is scheduled in a little,over a week.

Congradulations on your NED!!!  I hope to be there some day as well.

 

SnapDragon2's picture
SnapDragon2
Posts: 583
Joined: Nov 2019

There are many success stories with the pump.  One thing I have read is no running as it could dislodge maybe.

 

Jim462's picture
Jim462
Posts: 10
Joined: Dec 2020

i've received minimal detail on day to day life with the pump. Opinions have ranged from "it should have minitial impact" to "it's going to be a big change for you".  

I know the most important aspect is to attack the evil inside of me, but being active has been a large part of my ability to cope with treatments and recover from surgeries.  

i have been told no bouncing or jarring motions which as you point out rules out running.  Motorcycle racing is also out as a crash would be a big problem. I have also naturally ruled out returning to self defense classes.  

i dont have a problem leaving stuff behind for now and even forever (I'm 60+ yrs old) I'm trying to better understand what this long-term commitment to the pump is going to be like as they want it in for 5 yrs. 

 I would imagine like many, I am willing to make some big trades and sacrifices to get a leg up on this stuff.  

Trubrit's picture
Trubrit
Posts: 5513
Joined: Jan 2013

I think that would be a big problem in far too many ways. 

I am happy that you feel OK with stepping back from the very energentic activities.  I know you will find other outlets to keep you fit and healthy. 

What kind of self defence classes were you participating in?  I did a spell of Shotokan, in my younger life. While I did not pursue it as I got older, there have been a few times when the dicipline has come in handy. 

I hope as the days pass, some members who have had the HAI pump, will come along and share their wealth of experience. 

Tru

SnapDragon2's picture
SnapDragon2
Posts: 583
Joined: Nov 2019

Take it slow like a lazy river :)

Just from open surgery a yr ago I still cannot go back to krav!  I miss it very much.

Jim462's picture
Jim462
Posts: 10
Joined: Dec 2020

Unfortunately crashing is a part of racing...fortunately I haven't done too much but I've had a few.  I was diagnosed in June 2019 and raced until July while waiting for treatment.  Chemo and radiation ended in January 2020.  I started in February and raced until I went in for surgery in August.

Now I'm likely faced with the end of racing...at my age you can't stop for 5 yrs and then get back on the track and be safe.   

I was a Krav student as well as you say I miss it!!!  I do have a heavy bag in my basement gym that I hopefully will be able to continue to use.

i believe that we must live life as much as possible and fight hard to keep our lives as intact.  I'm sure that attitude is not unique to me.

 

SnapDragon2's picture
SnapDragon2
Posts: 583
Joined: Nov 2019

Hey,  you just reminded me that I have a bag I need to hunt down somewhere around here.

 

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

Hi Jim, sorry to hear about your situation. I had my HAI pump installed way back in Sept of 2004 (not a typo) and have been under the care of Dr. Kemeny since February 2004. I'm guessing that you have her as your oncologist as well. When I had the HAI pump installed I felt soreness in that area and it was very sensitive to being bumped into. There were times when I'd be sitting on the couch with my wife and her arm would accidentally brush against where the pump was and I'd jump. The area became less sensitive as time went by. 

At the time of my diagnosis I was 46 and moderately active but nowhere near the level that you are. I was told to avoid things like skiing which was with me since I wasn't realy good at it. I had taken up still water kayaking right after my dx and I still manage to get out though not as often as I'd like.

I think that most people use the HAI pump for about 6 months, at least that was my case. Some chose to have it removed ASAP but I did not. It's still implanted in me. The reason being is that once it's removed it can never be re-installed. I've never had to use it since the initial installation but I've become a bit superstitious and I do not see any benefit in removing it. It's not like I can resell it although it's an old Codman pump which is in demand. Every 8 weeks or so I get it serviced which is just a matter of them putting glycerol in it to keep it primed.

I'd check with your oncologist and see if you can resume activity if you were to decide to have it removed after your treatment.
Best,
Phil
 

Jim462's picture
Jim462
Posts: 10
Joined: Dec 2020

Thank you so much for your reply!  

I know of Dr Kemeny but my oncologist is Dr. Chalasani.  She has hours in the Basking Ridge facility which is a very nice 30 minute country drive from my home.  My surgeon is Dr Jarnagin.  

That's awesome that you can kayak, that's not an insignificant activity!  I'm a very active 61 yr old and I naturally would like to maintain as much endorphin-fix in my life as possible.  They want me to keep the pump for 5 yrs but I figure that I can have it removed before that if I want.  

I go for presurgical testing tomorrow and a final meeting with Dr Jarnagin.  Then surgery next week...followed by 4 months of chemo which will begin 4-6 weeks post surgery.  Boy am I nervous And scared. 

It's all life changing stuff but I guess that began once I was diagnosed in 2019.  

Thanks again for the response...you are an inspiration to me!!!

 

SnapDragon2's picture
SnapDragon2
Posts: 583
Joined: Nov 2019

If you are the type that has to know how your surgery will go then SAGES is the place to watch your surgery n an edited form of course.  I am one of those people thats all about the details so I watched mine and it gave me an idea of what to expect.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

Dr. Jarnigan did my surgery as well! Great surgeon and a nice guy as well. It's normal to be nervous about any procedure. There's probably a greater risk just driving into the city. I think it was in July of 2019 that MSKCC opened what's known as The Bergen Satellite Office. That's where I go but I've heard good things about Basking Ridge. 
I hope things go very smoothly for you. Please let us know how you're doing whe you can. You're in very good hands with Dr. Jarnigan. 
☮️ Phil

abita's picture
abita
Posts: 1072
Joined: Dec 2017

For some reason I thought you had lung tumors. I didn't know you were NED. Is that from chemo only?

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I‘ve never been NED. I’m still dealing with a lung met and an abdominal wall met. I was just sharing my HAI experience with Jim.

Bayou2019
Posts: 2
Joined: Dec 2020

What is it....isit just for men..

 

Trubrit's picture
Trubrit
Posts: 5513
Joined: Jan 2013

HAI - Hepatic Artrery Infusion.

It is for use by both male and female. The pump is implanted under the skin, close to your liver, and chemo is infused directly to the liver via a cathater. 

Hope that helps. 

Tru

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

Here's a link of Dr. Nancy Kemeny explaining the pump. 

Ruthmomto4's picture
Ruthmomto4
Posts: 706
Joined: May 2013

It really did cause him any life changes or discomfort, except you can't use a hot tub or hot bath either. His was an old one so it was bit different. He had no side effects like nausea or things like that from it. He had it put in in 2018 & removed during hernia surgery in 2019. it did not go as planned for him but he has not had any cancer return in his liver. Good luck!

Annabelle41415's picture
Annabelle41415
Posts: 6723
Joined: Feb 2009

Welcome to the group.  I'm not able to help you with your question, but there are people on here that have had the same procedure as you.  We are here to help you get through this.  Wishing you well in your upcoming treatment.

Kim

Real Tar Heel
Posts: 255
Joined: Nov 2019

Hello, sorry to meet you under these circumstances.

I am (was?!?) CRC IVa. You can see my history on my about page. I just had an open liver resection/ablation this summer. I have not had this HAI pump nor has my oncology team ever mentioned it. I'm guessing that they aren't believers... I do have a surgically implanted port on my chest for systemic chemo.

At any rate, I was an athletic type and I am trying to return to that state. I am running again now and doing some weight lifting. It was a long way back. The port I have does impact my activity in that it hurts to perform certain excercises. I would like to have it removed, which I guess I will wait to bring up until my next CT.

My understanding of the HAI pump suggests to me it would be an impairment in your ability to do exercise. However, the chemo is going to be the real bugger here. There will be days -- more as you progress -- where you don't have the energy to perform even though you have the will. When I was on FOLFOX I was okay at the beginning, but was soon not working out at all or even taking regular walks (other complications made it worse for me). I have read others say that they were able to keep up an exercise schedule, just not what they had grown accustomed to. YMMV. The worst part of the FOLFOX for active people is the neuropathy.

I have had several invasive procedures. I had a partial colectomy, laproscopic which went smoothly. I had an ablation not long after that, then chemo and then the most recent procedures. For me, I was fortunate not to be in a situation where the surgeries left me unable to do the things I'd done before. It sounds like you will be in the same boat.

abita's picture
abita
Posts: 1072
Joined: Dec 2017

I haven't heard of a pump in chest. What is that called? I have a port, but that isn't like a pump, it is only accessed during chemo. Does the chest pump work for your lungs the way a HAI pump works for liver?

Real Tar Heel
Posts: 255
Joined: Nov 2019

This morning, I realized I typed pump instead of port, sorry.

abita's picture
abita
Posts: 1072
Joined: Dec 2017

BUMMER! I was really hoping you knew of some new directed treatment for lung mets. They seem to be so much harder to get rid of than liver mets.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

As Dr Kemeny once told me it's not rocket science. I'd find a new oncology team but that's purely my opinion. Not everyone has the same results. Good luck!

Real Tar Heel
Posts: 255
Joined: Nov 2019

Since I've been lucky enough to be a surgery candidate, that could be the reason it hasn't been discussed. If I have another reccurrence, perhaps it will be in the discussion.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I had my usual chemo yesterday and had my pump serviced which just means that they put an inert fluid in there to keep in working in case I ever need it again. I mentioned what your team said about the pump to my nurse and she was surprised. I'm not trying to get you to second guess everything and I'll stop commenting unless you ask me a question, but my nurse was saying that when you have liver surgery is the absolute best time to have the pump put in. The purpose of the pump is to give chemo directly to your liver to kill of any remaining cancer cells instead of giving chemo to all of your body. That way they can give a stronger dose where it's really needed and have less collateral damage.
I wish you the best and that everything goes well.
Best,
Phil 

Jim462's picture
Jim462
Posts: 10
Joined: Dec 2020

This is what I've heard as well Phil.  I want to know everything I can about life with the pump.

Jim462's picture
Jim462
Posts: 10
Joined: Dec 2020

Yes I also had a port and experienced some discomfort for awhile.  I eventually got to a point where I didn't even Notice it and was able to fully resume all of my activities.

I also have had experience with the FOLFOX cocktail.  I tried to maintain as much activity as possible and had good and bad days. I also had a Chemo/Radiation regimen that got a bit tough toward the end. I have a bit of lingering neuropathy in my feet but nothing that I can't handle.

After some research and a second opinion I've arrived at the conclusion that the HAI pump is the most aggressive approach to treat this situation so I'm going after it full force.  

We must keep fighting to maintain control of our lives.

 

 

 

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