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

Jim462
Jim462 Member Posts: 10
in Colorectal Cancer #1

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.

«1

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited January 2021 #2
    Welcome to the forum

    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
    Jim462 Member Posts: 10
    edited January 2021 #3
    Trubrit said:

    Welcome to the forum

    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

    I’m fortunate

    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
    SnapDragon2 Member Posts: 720 Member
    #4
    There are many success

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

     

  • Jim462
    Jim462 Member Posts: 10
    edited January 2021 #5
    i've received minimal detail

    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
    Trubrit Member Posts: 5,804 Member
    edited January 2021 #6
    Jim462 said:

    i've received minimal detail

    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.  

    Crash

    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
    SnapDragon2 Member Posts: 720 Member
    edited January 2021 #7
    Jim462 said:

    i've received minimal detail

    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.  

    Take it slow like a lazy

    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
    Jim462 Member Posts: 10
    edited January 2021 #8
    Unfortunately crashing is a

    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
    SnapDragon2 Member Posts: 720 Member
    edited January 2021 #9
    Jim462 said:

    Unfortunately crashing is a

    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.

     

    Hey,  you just reminded me

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

     

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #10
    HAI Pump

    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
    Jim462 Member Posts: 10
    edited January 2021 #11
    PhillieG said:

    HAI Pump

    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
     

    Thank you so much for your

    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
    SnapDragon2 Member Posts: 720 Member
    #12
    Jim462 said:

    Thank you so much for your

    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!!!

     

    If you are the type that has

    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.

  • abita
    abita Member Posts: 1,152 Member
    #13
    PhillieG said:

    HAI Pump

    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
     

    For some reason I thought you

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

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #14
    My husband had one

    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!

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #15
    Jim462 said:

    Thank you so much for your

    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!!!

     

    Glad I could help

    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

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited January 2021 #16
    Welcome

    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

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    edited January 2021 #17
    abita said:

    For some reason I thought you

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

    Me?

    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.

  • abita
    abita Member Posts: 1,152 Member
    edited January 2021 #18
    Real Tar Heel said:

    Hello, sorry to meet you

    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.

    I haven't heard of a pump in

    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?

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    edited January 2021 #19
    Real Tar Heel said:

    Hello, sorry to meet you

    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.

    I'm guessing that they aren't believers

    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
    Real Tar Heel Member Posts: 307 Member
    #20
    abita said:

    I haven't heard of a pump in

    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?

    This morning, I realized I

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

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited January 2021 #21
    Hello, sorry to meet you

    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.

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