Update & 3 Dr visits and questions about Stivarga...need info

This is all boring and routine stuff I guess but I did see my Oncologist and it went fairly well. He had a medical student with him, maybe that's why he was more informative and friendly. Who knows. He had spoken with the Interventional radiologist that just did my second Y90. So they chatted but he really didn't tell me what exactly they decided about my prognosis. It's been exactly 4 weeks since the Y90, and I am still trying to recouperate from that. Since then I've had consistent pain in the right side of my liver that can be a sharp pain or barerly there and sometimes takes my breath for a second. He palpated my side but didn't feel it, like it was getting bigger so that's good. I sleep with a heating pad over it and that seems to help. Still seem to be super fatigued.

So oncologist thought that I should take a break from liver procedures and the possible TACe would definitely be the last one. He talked to me about starting Stivarga, the oral targeted therapy. I went to talk to the pharmacist about it, the side effects didn't sound too hideous, just like a lot of traditional chemo. Except seems like there is a chance more of awful skin diseases like hand and foot...also Steven Johnsons syndrome. I wouldn't know anything about that if I had not seen a patient with that once. It is fairly awful, I just don't know what the likelihood of getting those would be. The Cancer center helped me to get the drug from the manufacturer for free which is amazing, it would have been out of reach for sure...$1837 a month!!!

I did get the drug delivered, and the paper work that came with it said in all caps...WARNING-this drug can cause liver failure which can be fatal. Also fatal "holes" in your GI tract! Now what I want to know is why this was not even mentioned by the cancer center pharmacist? Anyhow, after I read that I'm pretty sure that I am NOT going to even try to take it. I am not healed or recovered from the Y90's yet. I do plan to talk to that pharmacist again about it.

I still have low appetite, nausea and stomach pain. So, I cannot fathom starting a medication in my current condition. I read on this site a couple of people having serious side effects from Stivarga.

Anyone else have experience with it and most important is did it work at all? Please, I am really needing to know.

Also had post procedure visit with Interventional radiologist that took the wonderful doctor's place. He wasn't very informative but said he wanted to schedule a 2 month post procedure scan. So that was pretty much it.

Third doctor visit was a urogynecologist. My bladder is causing a lot of problems, evidently the doc said that radiation therapy can do "strange" things to bladders. I have lost a good bit of control over it right now, but things are not bad as I thought. She was a wonderful doctor and is sending me to physical therapy for pelvic floor strengthening and a med to try. If that doesn't work, there is an option of botox. I hope something works is all I can say. I'm so glad I got to see her!

Thanks in advance for any help anyone can give me about my situation. I do think my doc avoids the issue of any kind of prognosis but since my CEA has jumped to 354, I don't think it's looking all that sunny. Sorry I can't be more positive, I guess time will tell. I am still seeing the therapist and she is looking into Pastoral care for me. I just try to keep going and pushing myself to thrive. I eat fairly well and still plan to finish all that dental work.

Let me know your thoughts...

Love y'all,

Karen