The Colon Club

We just came back from John's surgeon consult about his liver met (assumed, they can't biopsy it so they're treating it as cancerous considering the CEA/history), and when he asked if we had any questions I inquired about the HAI pump. He looked absolutely dumbfounded and told me that "took him back to the 80s". He said it was a popular treatment but for the cost and complications it didn't really show much improvement in outcome and there are better techniques now. I was kind of floored considering how much I've read about it here. Has anyone recently gone through the HAI pump treatment? John may not even be a candidate since his tumor is small and he only has one (that might be akin to using a flame thrower when only a laser is needed), but I was curious if the surgeon is just really out of the loop.

Thankfully he isn't the end all be all of the treatment plan, there is a tumor board that is meeting tomorrow and will go over his case to discuss the best options for him. All the waiting is keeping me on edge, I just want him to be in treatment already so we can kick this thing's butt!

I've had a similar response from two surgeons. I spoke recently to a surgeon from Stanford and he said that right now there isn't really a target on the right side of my liver (good news) and if the tumors start progressing then ablation is likely to be the targeted treatment of choice. I didn't get into the details but he didn't seem interested at all in an HAI pump.

My experience is that the only places you’ll get a positive reaction on the pump are the centers with expertise. And over time I have wondered if Kemenys pump success was as much or more just about her skill as an oncologist.

Personally if I wanted to know if the pump was the right option I would try to get a consult with Dr Fong at City of Angels or MSK.

I will admit his reaction did surprise me, considering how many people talk about it here. I haven't mentioned it to John's oncologist yet, I wonder if she would have a more positive opinion since wouldn't be looking at it from a surgical viewpoint? From what I've read, our local cancer center would need to coordinate with MSK or City of Angels on treatment so if she isn't keen on it I guess we'd have to find an oncologist who is, should it be deemed a good treatment for him. Thankfully, we have an NCI cancer center nearby we can go to for a second opinion as well. I guess we'll wait and see what the tumor board says for now.

Maybe part of the problem is that production of the Codman HAI pump was terminated by the manufacturer in 2018. Not enough demand. Not many pumps sold per year. Not very many hospitals using it. Not many doctors skilled enough to use it. Not profitable for the manufacturer to dedicate a production line to make such a product that brings in so little money:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59743&p=474879#p474709

Oh I had no idea they stopped production! That’s distressing, I’ve read of so many people here benefiting from it. Hopefully someone will come up with a similar technology, it seems like directing chemo straight at the problem would be better than running it through the whole body and hoping it sticks.

Tumor board surgeon said he won’t touch it (he’s the only surgeon locally who does liver oncology) and suggested just going straight to chemo. Oncologist says that’s idiotic without at least a biopsy and has referred John to an NCI hospital about an hour away. So more meetings, possibly more scans and a new tumor board to deal with =_=

crikklekay wrote:Oh I had no idea they stopped production! That’s distressing, I’ve read of so many people here benefiting from it. Hopefully someone will come up with a similar technology, it seems like directing chemo straight at the problem would be better than running it through the whole body and hoping it sticks.

Tumor board surgeon said he won’t touch it (he’s the only surgeon locally who does liver oncology) and suggested just going straight to chemo. Oncologist says that’s idiotic without at least a biopsy and has referred John to an NCI hospital about an hour away. So more meetings, possibly more scans and a new tumor board to deal with =_=

Medtronic makes a pump that they use now instead of the Codman. It needs to be refilled a little more often but works the same way otherwise. That’s what I’ve used.

Northwestern told one of my nurses that they don’t do many because not many patients ask for it. Luckily they have been willing to follow MSK’s direction to use it for my treatment.

Hi!
I am one of long timers on this forum. This spring I had surgery to remove the pump after 5 years of NED. I started with 10+ tumors, the largest was 7.5cm. Nobody gave me a chance to live 5 years. I am NED. I have my ups and downs. Chemo and pump are not easy for the liver. My bilirubin is between 1-2 most of the time. However, I eat and live normally and I am off all meds. I see my twins grow. They are 12 now.
I had Codman pump. Dr. Kemeny is still my oncologist. I see her only just once a year, now. Dr. D'Angelica was my brilliant surgeon.
Good luck!

It’s worth noting that HAI is now included in the NCCN treatment guidelines for CRC liver mets too, but only where delivered by a treatment centre with “with experience in this method” (basically MSK and a handful of others). So you could always refer your doctors to this, particularly if it’s an NCI designated centre.

I used the medtronic pump way..... back in 2004. I was the second person to sign up for that trial. That was almost 17 years ago. I've heard a lot of negative remarks about it - because people who want to complain, come on. And people like me, who had relatively few problems, aren't on here enough.

But a few years ago, the study came out that people who were on the trial have a 67% chance of survival at the 10 year mark. Not enough people have passed the 15 year mark yet, in order for them to come out with a new study.

When I was diagnosed, I was told I had 6 months to live but I could die at any minute. I had to look high and low for A. A place that would offer me hope and B. A place that was willing to accept me as a patient.

Only 6 places offered me hope of a cure. I liked what this clinical trial offered and so far, so good. From zero chance of survival to 67% chance for those at the 10 year mark.

YAY!!!

And if you check back here on my birthday and my cancerversary on July 22, I come back and repost my story.

And back in the 80's the offered the pump without systemic chemo. The trial I was on offered both systemic and HAI chemo.

They found that HAI chemo alone, didn't take care of any stray cancers that might be hiding throughout your body. So those studies faired poorly.

Thank you for your story! We’re still flailing around, the local liver surgical oncologist (the one who poo-pooed the HAI pump) more or less refused to do anything so we had to go to another cancer center out of town. While they are more than willing to accept John as a patient, they’re currently arguing with the oncologist on HOW to treat him. It’s still just one spot so currently the HAI pump isn’t part of the possible treatment options, but there is still a concern there may be more there the MRI can’t see as his CEA keeps shooting up. It’s all very nerve wracking, but the doctors keep being impressed by my knowledge so I’m glad I have this community to share and educated me so I can advocate for my husband

Hi- my mom had the pump put in 2012 (diagnosed May 2011 - bit didn’t start out at msk. After liver resection of one met and when it came back year later she went to msk). She still has it but has been clean since October 2015. She has the one they discontinued a bit ago. Not sure if and when she will have it removed. I would consult with msk if you are able.