ginabeewell wrote:When I got to chemo today, I was still a little bloated and mentioned my bloating this weekend. The doctor said it seemed like normal GI side effects, but she heard a slightly higher pitch in my belly, so she sent me for an X-ray before treatment just to make sure the infection I had previously had not returned.
Thankfully that was all clear, and I am hooked up for chemo now.
With a plan semi-outlined for the next few months, I can tell I am a little anxious about anything that would take us off course.
The team here at Northwestern seems REALLY excited about the fact that I'm working with MSK to get the pump. At my check-in today, my RN told me that she had spent a year on Kemeny's nursing team. She was the one who fielded my initial written request for a consult on MyChart, and told me that she was impressed / surprised that I had done the research and was forceful about pursuing it. Apparently most patients are not. She reached out to her old nursing contacts there to confirm I would be a candidate and they confirmed they thought so and would look out for me.
Overall, she said, "I just wanted to encourage you and tell you I think this is absolutely the right path for you. Dr Kemeny is a genius, she's assembled an amazing team, and you will be in great hands."
She also mentioned that she was surprised NW isn't more aggressive with their pump program. When she asked the lead oncologist here why that is, the answer is that patients aren't pushing for it. I think my doctor here is amazing, and I hope my results might inspire her to lead the charge here in the Midwest to develop a more comprehensive program. It is still boggling my mind a little bit that the pump hasn't progressed to be standard of care. And honestly - what a crazy data point that reinforces that patients need to be driving their own care. Patients aren't pushing for it - wouldn't you think the doctors would?? I think my doctor is the kind of doctor who will.
Pyro wrote:Sounds like you’re in good hands, I had 2 planned liver resections due to multiple mets, they took about 30% the first time and around 70% the second spaced about 4 months apart. The recoveries weren’t crazy hard, sore and tired, I was fully open and not having a core was hard, wear a support brace! I felt about 75% within a few weeks, in fact, I was able to do most activities within that time. The colostomy surgery however, is a 9/10 of difficulty in life changing and recovery. I never had a pump, and everyone’s recovery is different.
Pyro wrote:It was my third open surgery, I’m sure that had a lot to do with it, my core is pretty much gone. I also jumped into chemo after surgery, so that set me back as well. The scars hurt, the hernias are distressing (plus unsightly) and with everything jumbled up in there now,pooping is just strange. Along with the stoma, the surgeons had to fill the “hole” that was left in my anus area, they used ab muscles, so even less core. You can imagine with all of the re arranging there is scar tissue, that is painful as well.
Everyone is different, and your results will vary.
LPL wrote:Ginabeewell, I think you are saying a lot of ‘making sense ‘ here! Really odd that they are expecting patients to drive/to demand specific treatments!
I am happy to see that there is a HAI trial in Europe now.
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