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.

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