The Colon Club

mpbser wrote:It is correct. I just spoke with her yesterday about it.

Strange. Wonder if that's driven by her confidence in specific centers vs others? Sounds like she is pretty tight with the surgeon at NW who runs their pump program. At any rate, maybe this will change over the next few years if other centers get aggressive about developing their programs.

From what I understand, the maintenance of the Medtronic requires far more skill. It is "more difficult to find the infusion point." Not exactly sure what that means. She did say that she might know someone who can service it for us in Boston but she didn't realize we live equidistant to Boston as to Westchester.

I have heard that there is a HAI trial in Europe (The Neatherlands). It looks like they are doing it in 4 different places/Hospitals. So does that mean a lot of people there have learned how to do this maintenance?
https://dccg.nl/trial/pump-trial

mpbser wrote:I spoke with my aunt who has been a nurse for 47 years this morning about our situation. When I told her that MSK has implanted this pump/adaptation implanted in about 60 patients so far and the trial started this past summer, she was extremely negative about going through with it. She kept saying SIXTY?! ONLY SIXTY?! and asking if my husband wanted to be a guinea pig over and over and over.

Sigh.

Someone has to be the pioneer or we'd never have any advances.

hiker

LPL, I looked at the website that linked from the website you provided. I see that the pump being shown there is a German product called "tricumed." https://www.chemopomp.nl/ It is not the same pump as the only one currently available in the US, the Medtronic-Codman adaptation under trial at MSK (and being implanted "off label" at other places). However, it COULD be the Medtronic-Codman adaptation simply renamed. I don't know anything about European medical device law.

Actually, upon further review of the website, it looks like it is definitely not the Medtronic-Codman adaptation. The site states, "The chemo pump has no battery but a gas that together with the body temperature provides the driving force for circulating chemotherapy." That is a description of the Codman pump, not the Medtronic which has a battery. Where the heck did they get this technology? VERY VERY interesting!

mpbser wrote:Actually, upon further review of the website, it looks like it is definitely not the Medtronic-Codman adaptation. The site states, "The chemo pump has no battery but a gas that together with the body temperature provides the driving force for circulating chemotherapy." That is a description of the Codman pump, not the Medtronic which has a battery. Where the heck did they get this technology? VERY VERY interesting!

Wow, you are so good at finding things!! I went looking there to see what pump they used but I did not find that info!

I sent them a question that you might find helpful, LPL: Could you please tell me what maintenance is needed when the HAI FUDR treatment (usually six months) is finished? Is it every two weeks filling with saline or is it every 6-8 weeks fill with glycerol?

I will let you know what they say.

This looks to be a product of Servier, Amgen, and/or Merck.

Interestingly, Memorial Sloan Kettering's logo appears in the revolving banner at the bottom of https://www.chemopomp.nl/chemopomp

mpbser wrote:I spoke with my aunt who has been a nurse for 47 years this morning about our situation. ..... she was extremely negative about going through with it. She kept saying SIXTY?! ONLY SIXTY?! and asking if my husband wanted to be a guinea pig over and over and over.

Sigh.

Hasn't your aunt retired from nursing by now? She must be in her 70s.... What was your husband's response to her.....is she
undermining his confidence?

Yes, she retired but does some emergency medical management training for hospitals on a contractual basis from time to time to keep busy. I have kept her attitude about it to myself so my husband has nothing to which to respond. It only shakes me up and scares the living daylights out of me.

Dr. Kemeny is 73, btw.

mpbser wrote: It only shakes me up and scares the living daylights out of me.

Just like a martini in a James Bond movie, eh?

The way Dr Kemeny is spoken about in this forum, I have long received the impression she was ageless. No doubt
she is mentoring and guiding scores of junior doctors and passing down her decades of experience. More power to her.

Unfortunately it sounds like there are really only a couple options. Get Dr. K to implant the pump as part of her trial and hope it works on the liver Mets, which it appears to do for other people, and have the hassle of the maintenance of the pump after treatment, while hoping someone closer to home will service it in the future. Or skip the pump as it is a trial and have surgery and systemic chemo alone.

It sounds like the debate is because Dr. K is running a trial for the new pumps. Going back to the old pumps isn’t an option from what I have read so it looks like these new style pumps will be what she uses during and after her trial. My opinion would be to go the pump route but that is just me.

Maggie Nell wrote:

mpbser wrote: It only shakes me up and scares the living daylights out of me.

Just like a martini in a James Bond movie, eh?

The way Dr Kemeny is spoken about in this forum, I have long received the impression she was ageless.

I’m with you, a lot of trust in 1 person who isn’t getting any younger, but her knowledge isn’t secret or selfishly kept. I get it though, scary times and her name pops up when people deal with liver Mets. FWIW I had 13 tumors all over my liver, my local surgeon in a fairly large town told me he couldn’t do it, the tumors were too diffuse. MD Anderson surgeons had all the tumors out within 6 months, no pump necessary. There are different ways to skin the cat, and everyone’s disease is unique.

Just had an interesting interaction with my RN here at Northwestern. She was apparently the one who originally fielded my pump question on MyChart when I asked for an MSK / pump referral. Turns out she spent a year there working on Kemeny's team.

What she shared:
1) Kemeny is a genius
2) She's a workhorse - but a huge part of how she managed patient workload is the fact that she's assembled an amazing team. She doesn't work alone, and other MSK oncologists are just as aggressive with pump treatment.
3) She was glad that I reached out to ask about the pump and noted how surprised she was that I had done that research / how few patients do. She thinks I'm making the right decision to pursue.
4) She's surprised that NW doesn't do more pumps even though available here. The lead oncologist says they don't do it mainly because people don't ask. Wow. Maybe this will someday be my focus for patient advocacy.

Just thought I would share.