How crucial is the HAI pump?

[ginabeewell]

Sadly, I believe many oncologists just go through the motions when the tumors are inoperable and don't pursue aggressive treatment like I think they should in some cases. Fortunately I was operable and didn't need the pump, but if I were in your situation, I would DEFINITELY pursue one.

I spoke to four oncologists in the initial stages of my diagnosis - all at renowned NCIs - one at Cleveland Clinic, two at Northwestern and one at University of Chicago. The last of these was supposed to be one of the top colon cancer specialists in the world, by the way. Not one of them proactively mentioned the pump to me. I think that is because none of their institutions had a true pump program up and running - and doctors are like anyone else, they recommend what they know.

Incidentally, three of the four also refused to talk about surgery, likening it to "talking about college admissions when you haven't been to preschool yet."

Thankfully the oncologist with whom I ultimately ended up working - the one who WOULD discuss surgery - was supportive of the pump and working with Dr Kemeny: "She has a unique skillset that is unlike anything you'll find in the Midwest." So she didn't stand in the way of it - but she didn't push it either. Once I'm on the other side of this, I'm going to make it my business to drive awareness of this as a treatment option and hopefully push for Chicago to get more aggressive about offering it as a treatment locally.

MSK has been flexible about splitting my treatments between there and Northwestern which is local to me - I do my pump chemo in NY every other time, and every other time I do systemic here in Chicago. If City of Hope isn't covered by your insurance, possibly they would be willing to do the same.

[TinaFish]

Go right away for the pump like the others have said! I got mine put in on 3/6/19 . I was originally supposed to have a partial liver resection at the same time but they found an additional 20 tumors the scans didn’t show when they went in fora total of 27 tumors. My surgeon (Dr.Kingham) at MSK closed me up after seeing that and didn’t do the resection. I had a PET scan on Monday after 6 treatments with the pump and doing systemic and it looks like I had a complete response from it. They are saying I don’t even need a liver resection now. The studies show the pump to be more effective if you get it while still in your first line of treatment also this will give you access to better liver surgeons who may have a completely different opinion on if your resectable or not yet. Good luck and by the way don’t stop if one place declines you for HAI pump. Keep looking at other hospitals that do it in that scenario. We have a list from another group of known hospitals that do the Medtronic version as the Codman pump is no more!

Wait, you had your colon resection one day after you got diagnosed??

Yes! It was 98% blocked so i had to have an emergency surgery to remove the tumor.

Sounds like a blessing in disguise! You were out of the woods after nine months! Congratulations!!

[TinaFish]

Sadly, I believe many oncologists just go through the motions when the tumors are inoperable and don't pursue aggressive treatment like I think they should in some cases. Fortunately I was operable and didn't need the pump, but if I were in your situation, I would DEFINITELY pursue one.

I spoke to four oncologists in the initial stages of my diagnosis - all at renowned NCIs - one at Cleveland Clinic, two at Northwestern and one at University of Chicago. The last of these was supposed to be one of the top colon cancer specialists in the world, by the way. Not one of them proactively mentioned the pump to me. I think that is because none of their institutions had a true pump program up and running - and doctors are like anyone else, they recommend what they know.

Incidentally, three of the four also refused to talk about surgery, likening it to "talking about college admissions when you haven't been to preschool yet."

Thankfully the oncologist with whom I ultimately ended up working - the one who WOULD discuss surgery - was supportive of the pump and working with Dr Kemeny: "She has a unique skillset that is unlike anything you'll find in the Midwest." So she didn't stand in the way of it - but she didn't push it either. Once I'm on the other side of this, I'm going to make it my business to drive awareness of this as a treatment option and hopefully push for Chicago to get more aggressive about offering it as a treatment locally.

MSK has been flexible about splitting my treatments between there and Northwestern which is local to me - I do my pump chemo in NY every other time, and every other time I do systemic here in Chicago. If City of Hope isn't covered by your insurance, possibly they would be willing to do the same.

Great information and advice! Thank you so much

[TinaFish]

So question about the HAI pump... can you still receive your regular chemo treatments while you have the pump? Could you have colon or rectal surgery while the pump is installed?

And I read on another thread that you can't get an HAI pump if you've undergone radiation? Is this true? If so, why?

[radnyc]

The HAI protocol is a combination of chemo directly injected into the pump which then goes straight to your liver and systemic chemotherapy delivered by traditional methods, usually a port in your chest. I don’t believe they’ll do colon surgery while you’re on HAI, they’d prefer to have any other tumors taken care of first. But, I’m not certain, I’m sure someone else can chime in and provide more information.

[ginabeewell]

The HAI protocol is a combination of chemo directly injected into the pump which then goes straight to your liver and systemic chemotherapy delivered by traditional methods, usually a port in your chest. I don’t believe they’ll do colon surgery while you’re on HAI, they’d prefer to have any other tumors taken care of first. But, I’m not certain, I’m sure someone else can chime in and provide more information.

In my case they did my colon resection at the same time that they placed my pump.

I’m not sure what the radiation issue is - only that a surgeon at NW said I would not be able to pursue the pump after radiation, which my oncologist then confirmed. Maybe the liver isn’t strong enough to withstand both treatments?

[boxhill]

Sounds like a blessing in disguise! You were out of the woods after nine months! Congratulations!!

No kidding!

My right hemicolectomy was done within hours on the day that I was diagnosed, thanks to a blockage and fear of the swollen and stressed colon upstream perforating. Every detectable bit of cancer was removed, plus one liver met that wasn't detectable except by physical examination of the liver.

It was great to have it all happen so fast and not have time to worry and obsess about that phase, anyway.

Regarding City of Hope and your insurance situation, don't forget that hospitals do provide a certain degree of pro bono care. Don't give up.

Has there been any discussion of how to treat your lung mets--if they are definitely mets?

[juliej]

So question about the HAI pump... can you still receive your regular chemo treatments while you have the pump? Could you have colon or rectal surgery while the pump is installed?

Yes, you get chemo in the pump (FUDR), which incidentally has almost zero side effects since it goes straight to the liver. And then you get another systemic chemo - irinotecan, capecitabine, etc. - at the same time.

And yes, you can have surgery with the pump installed. It's just a small, hockey-puck-sized device that sits in your abdomen. They put saline in it when it doesn't have chemo in it. So nothing that would prevent surgery of any kind.

[TinaFish]

Sounds like a blessing in disguise! You were out of the woods after nine months! Congratulations!!

No kidding!

My right hemicolectomy was done within hours on the day that I was diagnosed, thanks to a blockage and fear of the swollen and stressed colon upstream perforating. Every detectable bit of cancer was removed, plus one liver met that wasn't detectable except by physical examination of the liver.

It was great to have it all happen so fast and not have time to worry and obsess about that phase, anyway.

Regarding City of Hope and your insurance situation, don't forget that hospitals do provide a certain degree of pro bono care. Don't give up.

Has there been any discussion of how to treat your lung mets--if they are definitely mets?

Pro bono would be nice!! I'm supposed to meet with the oncologist in a few days, and we'll discuss referral to a liver surgeon so I can discuss resection and/or HAI pump. But I don't know if she's willing to refer me yet. She may want to get some more chemo in me first. I don't know, if that happens then I'll probably just call them on my own and try to meet with one.

[TinaFish]

So question about the HAI pump... can you still receive your regular chemo treatments while you have the pump? Could you have colon or rectal surgery while the pump is installed?

Yes, you get chemo in the pump (FUDR), which incidentally has almost zero side effects since it goes straight to the liver. And then you get another systemic chemo - irinotecan, capecitabine, etc. - at the same time.

And yes, you can have surgery with the pump installed. It's just a small, hockey-puck-sized device that sits in your abdomen. They put saline in it when it doesn't have chemo in it. So nothing that would prevent surgery of any kind.

JulieJ, you had over a year's worth of chemo before you got your resection and HAI pump! Why did they wait so long? Other responses on this thread said that the sooner you get the pump, the better; but obviously whatever decisions your doctor made for you were the right ones, since you're NED!

[juliej]

Hey, TinaFish (that is the cutest name! ),

I sent you a PM with all the details. Check your inbox when you have time. If you have more questions, I'd be happy to answer them!

Juliej

[kandj]

So question about the HAI pump... can you still receive your regular chemo treatments while you have the pump? Could you have colon or rectal surgery while the pump is installed?

And I read on another thread that you can't get an HAI pump if you've undergone radiation? Is this true? If so, why?

As others have said, you get regular chemo (systemic) while on pump chemo. Pump chemo is 2 weeks on, 2 weeks off.

My DH had his colon tumor removed first, then the liver surgeon came in and placed the pump. Some people also have some liver resections at the same time. It is all done the same day, different surgeons.

I am not sure about the radiation. I suppose the theory is that radiation may damage the liver too much? My DH had radiation (SBRT) done to 4 liver mets that were a recurrence after the HAI pump got him to be resectable. We have not heard that the pump could not be used after if needed. Dr. K was the one that suggested the radiation.

[TinaFish]

Ok, so the HAI pump chemo is two weeks on, two weeks off. During the "off" time, is it possible that a patient would receive oxaliplatin? Or would the patient just receive something like Xeloda while having the HAI pump?

The reason I'm asking is because I'm having a really hard time with oxaliplatin side effects. If having the HAI pump would BOTH increase my chance of survival AND allow me to avoid oxaliplatin, then I really need to push my doctor for a referral.

I'm also very scared about permanent effects of oxaliplatin. I'm an artist. I work in fine detail on little tiny things. My hands are so important to me.

[ginabeewell]

Ok, so the HAI pump chemo is two weeks on, two weeks off. During the "off" time, is it possible that a patient would receive oxaliplatin? Or would the patient just receive something like Xeloda while having the HAI pump?

The reason I'm asking is because I'm having a really hard time with oxaliplatin side effects. If having the HAI pump would BOTH increase my chance of survival AND allow me to avoid oxaliplatin, then I really need to push my doctor for a referral.

I'm also very scared about permanent effects of oxaliplatin. I'm an artist. I work in fine detail on little tiny things. My hands are so important to me.

How many rounds of Oxi have you had so far?

I have heard that the new protocol for Oxi calls for it to be ceased after 6 treatments. I think I did 8 before my pump went in, so by the time Dr Kemeny started me on chemo with the pump, she wanted me OFF Oxi. I had started to feel some side effects - actually nothing that wasn't mostly resolving before my next treatment, but enough that she was worried the impact would be permanent. I actually tried to talk her into restoring it a few appointments ago, and she told me that there was a reason she discontinued it, and she thought I was fine without it - so I've been doing FOLFOX less the OX and Vectibix since the pump went in in late March.

All that to say, I don't think it is the pump that led her to discontinue but my total number of treatments and side effects.

I actually have heard that Dr K likes FOLFIRI with the pump and prescribes that most often. She hasn't introduced that for me - maybe she's keeping it in the toolbox? - but that is another option if you want to stay aggressive and the Oxi proves to be too much.

[TinaFish]

Ok, so the HAI pump chemo is two weeks on, two weeks off. During the "off" time, is it possible that a patient would receive oxaliplatin? Or would the patient just receive something like Xeloda while having the HAI pump?

The reason I'm asking is because I'm having a really hard time with oxaliplatin side effects. If having the HAI pump would BOTH increase my chance of survival AND allow me to avoid oxaliplatin, then I really need to push my doctor for a referral.

I'm also very scared about permanent effects of oxaliplatin. I'm an artist. I work in fine detail on little tiny things. My hands are so important to me.

How many rounds of Oxi have you had so far?

I have heard that the new protocol for Oxi calls for it to be ceased after 6 treatments. I think I did 8 before my pump went in, so by the time Dr Kemeny started me on chemo with the pump, she wanted me OFF Oxi. I had started to feel some side effects - actually nothing that wasn't mostly resolving before my next treatment, but enough that she was worried the impact would be permanent. I actually tried to talk her into restoring it a few appointments ago, and she told me that there was a reason she discontinued it, and she thought I was fine without it - so I've been doing FOLFOX less the OX and Vectibix since the pump went in in late March.

All that to say, I don't think it is the pump that led her to discontinue but my total number of treatments and side effects.

I actually have heard that Dr K likes FOLFIRI with the pump and prescribes that most often. She hasn't introduced that for me - maybe she's keeping it in the toolbox? - but that is another option if you want to stay aggressive and the Oxi proves to be too much.

I've had 3 rounds of oxaliplatin so far. I believe I could tolerate 3 more. I'm just scared of permanent effects. Do you know what the suggested protocol after 6 rounds of oxaliplatin is for people who DON'T get the HAI pump? Just curious