Wow, these are great stories. I wish my husband was MSI-H!

Pull-ups were the culprit! Who would have known? I will make sure my husband stays away from them post surgery.

Dr. Kemeny is 73, btw.

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.

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 lo...

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 descriptio...

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 ...

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 B...

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 S...

Good point, cbsmith. That is IF the medtronic-codman catheter trial goes well and they are still being used. To date, MSK has only implanted about 60 of them starting about seven months ago. Someone on one of the facebook groups, let's call her "AA", recently reported that her pump is defe...

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

Unfortunately, only in rare situations like yours Gina will Dr. K agree to have any other place do the servicing. MSK's West Harrison location is three hours away under normal weather and traffic conditions, so at least we would not have to always go into Manhattan. I am glad to have information abo...

This is easy for people with a Codman pump to say, given the fact that you have 6-8 weeks between servicing. For us who have no choice other than to go with the Medtronic, with its every 2 weeks' servicing, it really is a different decision.

Driving 4+ hours each way to/from NYC every two weeks is the issue. This is a huge commitment. If there is a small chance of recurrence, then my husband would have it removed after treatment. We need to make this decision fairly quickly and it's difficult without data.

For all those people with HAI pumps == after your six months or so of FUDR treatment, did you have a recurrence that you had to have more FUDR to clear up? Asking because my husband is wondering about pump removal after FUDR treatment is done. I know Dr. Kemeny likes to leave it in for at least two ...