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

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Comments

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited January 2021 #22
    PhillieG said:

    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!

    Since I've been lucky enough

    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.

  • abita
    abita Member Posts: 1,152 Member
    edited January 2021 #23

    This morning, I realized I

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

    BUMMER! I was really hoping

    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
    PhillieG Member Posts: 4,866 Member
    edited January 2021 #24

    Since I've been lucky enough

    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.

    HAI pump

    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
    Jim462 Member Posts: 10
    edited January 2021 #25

    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.

    Yes I also had a port and

    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.

     

     

     

  • Jim462
    Jim462 Member Posts: 10
    edited January 2021 #26
    PhillieG said:

    HAI pump

    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 

    This is what I've heard as

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

  • Bayou2019
    Bayou2019 Member Posts: 2
    edited January 2021 #27
    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
     

    What is a HAI PUMP

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

     

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited January 2021 #28
    Bayou2019 said:

    What is a HAI PUMP

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

     

    Hi

    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
    PhillieG Member Posts: 4,866 Member
    edited January 2021 #29
    Bayou2019 said:

    What is a HAI PUMP

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

     

    HAI Pump Info

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