Glycerol in HAI pump - not at MSKCC

[midlifemom]

Hi,
Does anyone have their HAI pump filled with glycerol locally instead of going to MSK?

What's your story behind not going there?

What's the logistics of making it happen?

[juliej]

I have my pump filled locally. I go to MSKCC for a scan/consultation and have it filled there and then 8 weeks later have it filled locally. Dr. K's office provides a script for the glycerol and my local place has it filled at a compounding pharmacy a few days before I come in. The nurses learned to access the pump by watching the training on MSK's website. While I'm there they do labs (CBC, CMP, LDH, and CEA) and send the results to Dr. K's office. I live on the west coast so this works out better for me than flying to NYC every 2 months.

Hope this helps!
Julie

[j'swife]

While our local onc found one local chemo center (not his own at a major local hospital!) that will service DH's HAI pump between MSK visits every 4 weeks, they are not able or willing to fill the glycerol RX to MSK specifications.

He can grin and bear it since we are in DC and MSK Is a train ride.

Wishing you better luck!

[kandj]

Hi,
Does anyone have their HAI pump filled with glycerol locally instead of going to MSK?

What's your story behind not going there?

What's the logistics of making it happen?

DH had his filled with glycerol once when the time between getting the FUDR taken out and then seeing Dr. K was going to be 3 weeks. It was not an issue. He was sent home from NYC with the glycerol and some icepacks. We gave it to his Local Onc.'s office and they stored it until pump discharge. They filled it up no problem. I figure this is what they will do when he is done with FUDR. One of the nurses at Dr.K's made it seem like we wouldn't be able to get the glycerol anywhere, but we have MDAnderson down the road, and they do HAI pumps as well as up at Baylor, so I am sure we can get is closer then NYC. I figure, if nothing else, we can have it overnighted from MSKCC. Still cheaper then flying out and staying in Manhattan!

[midlifemom]

Thanks all.

[arizona mom]

I live in Arizona and I was able to find a local oncologist that was willing to learn to access the HAI pump. My husband has always paid attention to the procedure and he still helps the oncologist to remember how to put the kit together and the order of the steps. It seems to me to be more of a nurse thing, but the office won't allow the nurses to do it (I think for liability reasons).

My cancer center was able to find a local compound pharmacy that mixes the glycerol. It costs $75 a pop and couldn't get my current insurance to cover it. Not a big deal, but it is interesting dilemma that I can go in every 2 weeks for saline at no cost (because I have met my out of pocket maximum for doctor visits), but I have to pay myself to buy the glycerol so I can wait 6 weeks between doctor visits.

My MSK oncologist is not Dr K.. I have heard that Dr K. is a bit more strict about where the glycerol comes from and who puts it in. My MSK onc pretty much gave her blessing for me to get glycerol from any compound pharmacy I could find willing to mix it.

Last I heard, MSK does not send out glycerol by mail. It was actually pretty hard to find a compound pharmacy willing to mix it. For a while, I had a company recommended by MSK sending it to me by mail order, but they stopped offering that service about 6 months ago. Also, recently, my local compound pharmacy told me that the glycerol needs to be used within like 3 days of being mixed. When I originally got it from MSK, I remember the expiration was like 6 month out.

That's my glycerol story.