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Aug 27, 2017 · Diagnosed with aggressive NET. Happy to see this group! in Neuroendocrine Tumors (NETs)

Thanks for the response and I am embarrassed by the delay. I need to remember to check this site daily!
The last infusions hit me pretty hard admittedly which was probably part of the reason. My neuropothy has definitely hit harder and I have some pretty significant blurring in my left eye that hasn’t yet gone away. I am going to schedule an ophthalmologist appointment on Monday per my oncologist’s suggestion. I have to wink to effectively read text on my computer and I feel like I’m looking at the world through a sheet of plastic with a slight distortion…..Very annoying!
This all kicked in on the first infusion day, which is the day I get the carbopatin so I’m going to blame it on that. I felt pretty terrible after that infusion, but not so different on day 2 and 3 when I just got the etoposide.

Aug 13, 2017 · Diagnosed with aggressive NET. Happy to see this group! in Neuroendocrine Tumors (NETs)

Super sorry for the delay everyone! It’s been a hectic work week and school week as well!
@hopeful33250 Thanks for the kind welcome and introductions! Having a negative attitude doesn’t do anything but sour the days we have remaining, however many that might be! I’m still very young in this process I suppose. I have gone through 4 rounds of three visits of chemo (total of 16 infusion visits) so far, once every three weeks (with a slight delay between the 1st and 2nd set due to insurance issues). No surgery, and no talk of it yet until after we get a grasp of how I have responded to the current treatment plan. My initial symptoms were severe abdominal pain, dry heaving, and blood in my stool. I started by going to my primary care provider whom put in a referral for GI, but the soonest I could get in was two weeks. The pain got to be too much. On the day I broke down and went to the ER (while still waiting for my GI appointment) I also having severe liver pain as well. It was VERY swollen, apparently, along with a 6” tumor. I went from no symptoms to essentially stage IV cancer in a matter of a couple of weeks, in terms of my awareness of the situation. I assumed I was going to be going to the ER to have a gall bladder removed or something. I was wrong, obviously. I went to bed that night pretty sure of the diagnosis and my colonoscopy with biopsy confirmed it the next day.
In the last few days Neuropathy has really gotten pretty bad, along with some ankle/foot/finger swelling. I’m really hoping that it doesn’t continue to get worse. I can live with it at this level but not much more. I’ve had some leg weakness as well that seems to be worse over the last couple of days. I got called in for a potassium infusion on Friday, prior to my chemo on Monday as I was low with that. This hasn’t really been my greatest week since diagnosis so I do have some concern for the future with regards to quality of life. When I go in tomorrow morning I am certainly going to address these concerns.
@tresjur Thank you! Wait and see, combined with chemo and my monthly injection seem to be the pla right now, which does seem to coincide with what the experts are saying is the norm (based on what I’ve seen online at least) considering the state of severity on my liver at diagnosis. My doctor is on vacation at the moment so I am meeting with a PA tomorrow before infusion, but I’m going to ask about Xmerlo for sure. Thanks for letting me know about that, as well as the book recommendation! I certainly hope that I outlast the life expectations I’ve read about. I worry some because of how aggressive mine has started out. Both oncology teams I have worked with informed me that the more aggressive strains respond better then chemo; I know this form of cancer doesn’t historically respond well to chemo so I’m very curious as to what will show up when we check the progress.

Aug 3, 2017 · Diagnosed with aggressive NET. Happy to see this group! in Neuroendocrine Tumors (NETs)

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! 🙂