Topic: I need help....personal experience
Background: I'm almost 8 weeks post curative intent surgery for Intra-hepatic CC with at least half or more of the left lobe of the liver removed. I was stage T2b because a 2nd very small half or less inch tumor was found during intra-abdominal ultrasound. 2.2cm clean margin (tumors were way out in the far end of the node), 6 lymph hilar lymph nodes removed with no involvement, and no neural or venous invasion. It is not known if the large 5.3 cm tumor had seeded, but if so, everything is microscopic as of the 6 weeks post surgery CT scan, so can not be seen.
I have two incisions which are not 100% healed (last quarter of an inch) due to stiches giving way in the last weeks of healing and finally am receiving some wound healing help with that from a wound expert. (The healing had stalled due to dead tissue and some lingering infections).
Since followup chemo, to hopefully kill off any stray seeded cancer cells that "might" be lurking God knows where, should be done 6-8 weeks post surgery for the best possible outcome (not that they know it really works to kill off cells or not), my local oncologist wants to go ahead with chemo immediately.
I'm getting a port installed this Friday here locally. However, upon meeting my oncologist the first time, I'm very uneasy. He came highly recommended and with many saying the same thing, as to how knowledgable he is and what an incredibly compassionate, warm person he is. That wasn't the guy we saw this week at our first consult. Maybe he was having a very rough day....I want to give him the benefit of the doubt based on the many stories I've head...personal experiences. I think I want to go ahead and start chemo with him here locally.
HOWEVER....if this uncomfortable feeling continues, I'm wondering about the feasibility of making the three hour drive to Mayo (where I had surgery and have an oncologist) to do the chemo instead. The distance isn't a problem....but I'm wondering about complications from chemo....if I should get back home and have trouble. Though, I'm not even sure what that could be...other than I've head of allergic reactions. (and I have a number of allergies) Am I totally crazy to even consider going back and forth?
OR.....if we got a place for monthly rental in Rochester, and we stayed there two out of the three weeks of a chemo round....and went back home for the third week of rest, would that work....or am I totally clueless as to what this chemo (Gemcetibine and Cisplatin) will do to me? I asked the local oncologist for an idea of what side effects it had...knowing I may not get all of them , of course, and he said it wouldn't affect my immune system that much, I would be tired, nauseated, have diarrhea....and lose my hair. The Mayo doctor said it WOULD compromise my immune system, I may have minimal , either nausea or diarrhea and might thin my hair.....and be very tired. I sure don't know who to believe at this point. I gather than the day of infusion, you don't feel all that bad, but rather about 3 days later for a few days until the next infusion. Is that correct? What is that third week like? I've also heard that the chemo gets rougher as you get further into the rounds. True?
I really don't function well with the unknown...and not having my ducks in a row. I really wanted to prepare a little in advance...but, with conflicting info or lack of info, I really feel like things are out of control again. I need to be driving this train, but it seems to be speeding along without me in the engine.
I have no idea when I will see the local oncologist in person again...but doubt it before I show up for the first chemo. I am going to talk to my GP tomorrow to explain to her the issues I'm having....but I'm also going to call the Mayo doctor and talk to him again. When I last saw him, he somewhat discouraged us going back to Mayo, driving back and forth, for chemo, just saying that he thought it would be hard on me.
Has anyone travelled like this for chemo before....and what were your experiences? Am I totally off the wall nuts to consider this?