Hi Rebecca, happy to help answer your questions. I think you joined a couple of the Facebook groups, which is good because you'll get a lot more perspectives there. To answer your questions one by one:
1) I don't know the structure of Dr. K with the other oncologists at MSK. I would think if your current oncologist wants to implant the pump, he or she trained under Dr. K and has access to her algorithms, which is good because Dr. K shouldn't be the only expert or she'll retire with it! I was automatically made a patient of Dr. K when I said I wanted the pump, so I don't know how it works when you already have an existing team. I think it is very difficult to change oncologists within MSK, but I wouldn't worry about not having access to Dr. K's expertise since they all work together.
2) After I mentioned the thing about hot tubs, I did look at my Medtronic papers and noticed that it said I shouldn't use them. But there is a surgical oncologist in the FB group who said it is fine with the Medtronic pump, since it is battery-powered. I am going to try to clarify this with Dr. K tomorrow. I'm confused myself!
3) I do jog now and Dr. Kingham said that many of his patients run and live normal lives. He is the one who basically convinced me to get the pump. He said that Dr. Kemeny is like a "strict grandmother" in this regard, but that he does not see any issue with his patients running and that it's important for health. The only issue he has seen is in overweight or obese people, sometimes the pump will turn over and they have to go in and turn it back. That said, when I jog I run with a quick, short stride so as to lessen the impact, and I go pretty slowly, and not for very long distances. I guess you could say I'm compromising between the two opinions, just in case!
4) As far as the physical look of it, I lost all vanity long ago with multiple surgical scars, an ileostomy scar that basically looks like a second belly button, and many bruises all over my abdomen due to blood thinner injections. However, I totally get that as a concern. I don't know who will do your husband's surgery, but Dr. Kingham did mine laparoscopically, which means I just have a small scar under my belly button and a four-inch horizontal scar where the pump was placed on my left abdomen. I have been using Scar Away strips and the scars have definitely lightened over time. Also I am of the opinion that scars prove how tough you are! As far as the protrusion of the pump, it is not too bad and depends on how thin you are. Yes you can see it and feel it, but for me it is not a big deal. If anybody ever saw it and asked about it I would have no problem explaining it to them.
5) I've only gone in once for a pump refill only, since I am currently doing chemo and every time I go in I am getting labs, seeing Dr. K, etc. so it takes longer. The one time I went in just for a refill right before Christmas it didn't take too long. Once you're back in the treatment suite it takes maybe 15-20 minutes for them to empty, fill, and program the pump. I take the attitude that this is a part of my life now, so I make the most of it. The waiting room at 53rd street is pleasant, and the time I went in just for a refill I scheduled it in the evening so I didn't have to miss work. I got dinner, ate it in the waiting room, got the pump filled, and was home by 8 pm. I think you and your husband can make the most of it, maybe even make it into a date night? I know that sounds weird, but your attitude can change the process from an annoying inconvenience to an opportunity to make something fun out of it.
I think you are getting good advice in the FB group to really weigh the pros and potential risks of the pump. It really does depend on how aggressive you want to be. I chose to be aggressive because I am young and felt I could handle it. I will say that my experience has not necessarily been the norm, since my Alk Phos shot up after one full dose of FUDR, and nearly three months later it has not gone down enough for me to get another dose. So I have been getting 5FU only for a few months. I believe Dr. Kemeny is being conservative with me since I already had my resection and this is adjuvant treatment. But it is still frustrating to have gotten in only one dose so far. All that to say, it is not a 100% perfect solution, but to me the recurrence prevention stats were enough to sway me, and I don't regret getting the pump one bit.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU