The Colon Club

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 years "just in case" but what are the chances of that "case" happening?

I would say if Dr K typically leaves them in for two years afterwards, she has seen enough cases justifying that recommendation. Its a good bet that she chose that time period for a reason. What's the harm? Leave it be.

GrouseMan

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.

I thought 2 years too, but when the 2 years came, onc told me it's 5 years. So, I waited another 3 years. I hated having the thing in me but, it was worth waiting. Most recurrences happen 1-2 years after NED surgery, what's another 3 years just in case? After chances of recurring drop dramatically. Go with what Kemeny suggests, don't be surprised if she tells you 5 years.

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.

mpbser wrote: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.

None of this is ever easy my friend.

The Codman pump was a superior product, affordable and low maintenance. I blame it’s demise on greed on the part of Johnson and Johnson and on a lack of foresight on the part of MSK. They easily could have them manufacture the device for them. MSK is a billion dollar institution.

I don't envy your position with the logistics. And here I complain about an hour and a half one way trip!

I'm going to go out on a limb and assume there is no place closer to home to go every two weeks for maintenance? Because that would be way too easy, right?

I really hope you guys are able to find a solution.

I am approaching 3 years NED with the pump and I will keep it at least until 5 years after surgery. I talked to my surgeon about their statistics. He told me that they have over 50% of recurrences but they can manage most of them using the pump and surgeries. It is just safer to keep the pump. I had complete pathological response which theoretically decreases my chance to have recurrence. I fly to NY from Atlanta. It is not fun with small kids but I have this time with my kids. It is a great time. I wish you the best of luck!

You may be able to get the pump serviced locally once the chemo is done?

MSK has authorized us to get the pump flushed locally monthly so we only have to come in monthly for the chemo. But you'd obviously need to have a local option that has a pump program or is willing to learn. (Luckily we do, it's just not as developed as MSK's.)

Even if I had to keep flying monthly, I think I would do that and keep the pump in for the recommended time. Once you set the expectation and get into a rhythm, I feel like stuff like that gets easier to manage with life.

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 about recurrences such as the 50% statistic. Now I am wondering what the breakdown is for those who get the pump. What #s have multiple mets compared to only one, such as my husband.

Even if you do have to keep the pump,for 2 or up to 5 years, that doesn’t mean down the road 6 months, a year, 18 months, etc that there won’t be other hospitals servicing the pumps that are closer to your location. In the meantime itmsucks but it sounds like you don’t have much of a choice. Nothing about chemo is easy and getting the pump flushed is one of those things. Hopefully once he is done with the HAI treatment the flushing is on an off week from systemic chemo and it is just one person traveling for the day to get it flushed.

mpbser wrote:Unfortunately, only in rare situations like yours Gina will Dr. K agree to have any other place do the servicing.

Not sure that's correct. Dr. K won't allow other facilities to fill the pump with chemo, but she usually has no problem at all letting others service it with saline.

hiker

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

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 defective/damaged/or otherwise not working (she didn't really provided details as she herself does not know what is going on with it). She had hers put in about seven months ago so she is one of the first. She's been in and out of MSK all week and returns Monday for a thorough review.

I know only about a dozen or so people personally with the medtronic-codman catheter and all of them have been recently implanted. AA is the only one I have been in contact with who had it placed more than a couple months ago. Only time will tell whether the others with have similar problems as to what she is experiencing.

While I realize that these particular pumps have been used in thousands of spines, the question of its safety with the codman adapted catheter remains to be answered.

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.