I just got off a video visit with my oncologist. Good news/bad news. The good news is that I'm discontinuing chemo. The bad news is because it didn't work. I've been miserable and the mass actually grew. Next step is to get me on some new drugs. There's a clinical trial right now for a very rare gene that I happen to have. There's a slight chance of surgery, though right now it would be too extensive to even consider probably. So I'm waiting to hear from the clinical trial people right now. He's hoping we can get me on some new drug in the next couple of weeks. I'm hoping that since I'm off the chemo I can start to feel like myself again and the new drug won't have too many side effects.
So, fingers crossed, say a prayer, light a candle, whatever way you send up good thoughts.
Quick update on Toddson:
Her hospital care team says she is doing well. And she let me know that she has moved to a rehab center in Bowie, MD. Ping me if you'd like to know which one.
She sounds bright in her messages, and says that both she, and her doctors, are optimistic about her recovery.
I've had to step back from my advocacy role, but I'm sure she will pop in to reconnect when she is able.
My father passed last night.
Hey All, I was emailed a reminder that I haven't checked in in a while (Hi, dcp & Brenda! Thanks for checking up on me!), so here I am. Sorry for being the Lurkiest.
I believe my last update was no more chemo, starting drugs. The clinical trial my oncologist originally wanted to get me in won't accept me because my kidney numbers aren't good enough, but he had a second option ready to go. I started an oral med just over a month ago, paired with an infusion drug that I started on Nov 1. One of the known side effects of the infusion drug is an "acne-like rash" which I got. Good news - the rash tends to be an indicator that the drug is doing what it's supposed to be doing in my body (i.e., teaching the body how to fight the cancer), Bad news - I got such a VERY EXTREME rash that they've pressed pause on the drug until we can get the rash under control. I've met with the dermatologist who specializes in cancer reactions, and the rash is very much improved. But still not good enough to give me another infusion yet. My oncologist assures me that the pause won't hurt anything, the drug is still working in my system. But it's weird - the rash is really a problem, but cancer is a bigger problem, so I want to get back on track.
And IOhealthN, my hemoglobin is very low, so I'm going to get another blood transfusion on Friday (instead of the drug infusion I was originally scheduled for). I was hesitant to get another transfusion (just because everything is already SO MUCH, y'know?), but it should help with some of the fatigue I've been feeling, and apparently being as anemic as I've been is extra stress on the heart so I'm going for it in the hopes of improvement.
As I'd hoped, being off the chemo has really improved how I'm feeling. I'm still not myself, but I feel so much better than I did for a while there, I'm still calling it a win.
I just, like, wrote a thing. But I think it's pretty good, so....
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