The Colon Club

I have been visiting this forum for about two years now. From what I have noticed, without paying all that much attention because we did not expect to be at this place in time with a recurrence and considering a pump, the majority of people here with Stage IV who have been NED for over five years have had a HAI pump. That was just an impression but now I really want to see if my impression was correct. So here are my questions:

1) For those who are NED over five years, can you please chime in so I can see your signatures?

2) If you had a HAI pump but it's not in your signature, please note that, thanks.

3) For good measure, can those who have been NED over two years (and still are currently) please do the same?

Thank you in advance. I will do a tally that I think will be helpful for everyone considering a pump.

My liver had 13 tumors, it’s been clear for about 2 years, no pump.

NED (in liver) since 2013

NED for 6.5 years, no pump. 6 liver tumors originally.

liver clear for 13 years - no pump.

3 liver mets (resectable at dx) open surgery Sept 1st 2016.
Chemo 4 before and 8 after surgery.
Nothing bad has been seen on scans in liver since then.
(Latest scans, CT & PET, January 2019).
No pump.

Hi mpbser,
Thank you for starting this post. We would love to learn others experiences about different ways of handle liver mets.
My husband had 10+ liver mets at dx September 2016, Liver resection January 2017, no pump, our cancer center doesn't offer pump ( one of the top ranking teaching hospital) and we didn't know about this forum and didn't have the knowledge of HAI pump at that time. We are so grateful he is NED since liver surgery.

I'm not sure how useful a tally is among just those NED. The pump is still relatively rare - only 300 a year implanted - so guessing most NED patients did not have one.

The real question I have been asking myself is survival versus not - and does the pump improve the chances of survival. That data is already collected and indicates yes. Those who did not survive are not here to be tallied. : (

Still very interested to hear stories but just noting that I'm not sure the data you've sought is going to be the most useful in driving a decision about the pump.

It will for my husband. When we started seriously considering the pump when we learned of his diagnosis, one of the things I said to him about this forum caught his attention: Among those stage IV who are NED 5+ years, it appears that the majority of these people have had HAI pump treatment.

So far, according to my excel spreadsheet containing the data as I see it, my impression seems correct. Final figures will be published here when I finish.

Got it. Hopefully the data falls that way!

I'm just worried that the final number you get will suggest that more people get to NED without the pump than with the pump. But that's a metric mainly of how many pumps get used vs not, not a measure of whether the pump works better than no pump. It validates that you don't need a pump to get to NED, but not that you're more likely to get to NED with or without one.

(Not to mention you've got a skewed sample here of those who are more knowledgeable and proactive than the average patient.)

Sorry, I'm sure it's the impact of 20+ years of reading research results making me cautious on your behalf!!

Somehow I feel vested in your husband deciding to get a pump. : )

Gina, I like the cut of your jib.

As far as this very unscientific study I am doing goes, I see it as randomized and blind and placebo-controlled as it can get. I have 28 "subjects" at the moment and hoping to increase my size in the next couple of days.

I will keep the forum posted!

I don't have any response to the original question (though I hope my mom will be able to join team no-pump!) but I wanted to say that this topic is helpful for those of us for whom pump is not an option. I'm really happy that the pump is saving so many lives, but I was also getting the feeling that survival was kind of dependent on it. It made me happy to see that other paths are possible too!

I plan to post the results no later than Saturday. Keep tuned and please keep sharing your information. The larger the data set, the better!

Looks like my original impression was incorrect... but still collecting data.

Here is the breakdown thus far:

In the 2-4 years NED range, 3 of 13 have had HAI
In the 5+ years NED range, 8 of 22 have had HAI

8.5 years, with HAI Pump.

That being said, PLENTY of people have gone to NED and cure without the pump for years. In fact, there a probably thousands who've been cured with only surgery dating back to the 80's. Surgery is the main thing that leads to cure or long term NED, I've always believed that. The pump and chemo are there to keep things in check. Do what you feel is right, personally I think the pump has helped in my remaining NED, but it was Dr. Jarnagin at MSK who expertly removed my liver tumors, he gets 80% of the credit, 20% goes to the pump and the crappy chemo.

Cheers!