Thank you so much for your response to this an for sharing your story with us. We are so hopeful that you will achieve NED status and hope you update us. How funny to connect with another NYC/neighborhood resident in a similar position. I have a few follow up questions for you -- we have actually never met Dr. K, we are working with surgeon Dr. Balachandrain. Should we make it a point to ask to see Dr. K or does she silently oversee everyone's cases? Second question, we were just sent a document saying we couldn't scuba, hot tub or anything of the sort, has that actually changed now that they have the Medtronic and they just haven't updated their educational documents? I am So happy to hear you jog a little. My husband needs that level of freedom as it is a passion of his, even a slow jog would make his heart happy, though I recognize we need doctor sign off on this :-p we'll definitely be asking about that at our next f/u. Thirdly, this my be too personal a question so feel free not to answer, but my husband is also concerned about the visibility of the pump and all of the associated scarring.I recognize that this is such a vein component considering he is fighting for his life, but, as you know, the body is the only thing we have that's totally ours, and through this process you can feel a bit dehumanized. I'm wondering if his imagined version of the pump pushing the skin super far out is too dramatized. Fourth--are they brief when you go in for the pump re-fills, or do they end up taking a large chunk of time-my husband's just trying to figure out how that will work with his job and what kind of time goes into all this!!!
Again, thank you thank you thank you.
heiders33 wrote:I decided to get the pump as adjuvant therapy even though I had just one liver spot pop up after my initial stage III treatment. I decided this because: 1) I live in NYC as well, close to MSK!; 2) I am young (36 years old); 3) I have the KRAS mutation which makes certain treatments unavailable to me; 4) I want to do everything I can do avoid further chemo and surgeries down the road by killing off any micrometastases in the liver. Yes, going in every two weeks to have my pump filled for as long as I have it is certainly limiting. However, I have not found the pump to be much more limiting than that. Yes, Dr Kemeny is strict about running and jogging, but actually my surgeon (Kingham) says it is no problem, so I have jogged a little (don't tell Dr K!). I don't really play contact sports anymore so that is not an issue. Other than those things, I wouldn't worry about it limiting your lifestyle. With the Medtronic pump, you can ski, scuba dive, sit in a hot tub. I prefer the few limitations now to the more extreme limits and struggles of further chemo and operations down the road. I am still in the middle of treatment so I can't speak to long term NED status, but I am hoping to get there! If I were you I would list out all the pros and cons and go from there. I don't want to tell you one way or the other, just wanted to share my decision process.