I was diagnosed in May with aggressive NET, which started in the colon and had already spread to the liver with a 6 inch tumor. I started in the ER at Rush University Hospital in Chicago where I received my first infusions inpatient, but have since moved to Northwestern, which is the best in Illinois. As soon as I switched, I was given the sandotatin injection along with daily dexamethasone. Between those two my quality of life has really improved. I know many say that chemo is worthless with this cancer but both oncologists I have had insist it be given a shot with how large my tumor was, and I certainly haven’t done any oncology residencies myself to argue.
My legs are like Jello most days and I’m fairly certain it’s caused by the chemo (as leg weakness is an occasional side effect of carboplatum (and it gets a little worse after each set of infusions). I’ve noticed ankle swelling for the first time tonight (though am not feeling any cardio/breathing issues and I have been on my feet most of the day) and I’m fighting chronic diarrhea. However I actually feel really good–far better than before I was diagnosed, unquestionably! I’ve continued my MBA through all of this and will graduate in December, and still work pretty normally with the exception of my infusion week.
I would certainly go to Mayo if they were closer but I can’t justify it at the moment. I have a couple more rounds of chemo in the original treatment plan and if I feel I’m getting nowhere at that point I’ll probably consider it but I really do love my treatment team and feel they are giving me loads of attention and help. I have a lot of confidence in them.
I’ve learned from this experience that attitude is everything, and really do value each relationship (work, spouse, friends) so much more now. I’m far more aware of the responses I give daily in reaction to petty nonsense. My perception of what matters has changed, for the better!
Anyway, I just wanted to introduce myself. I don’t know how long I have left on this earth but I was delighted to read about many of your experiences and it has given me what I needed most; hope! Thank you! There’s so much old information out there online that gives me an abysmal chance at three years so I already love this group! I’m not so worried about when I will pass on; but it’s really great to to see that it might not be over just yet! 🙂