So, it’s show time.
I spent the morning at the hospital ensuring that my informed consent is truly informed, and then I signed on the dotted line. If I pass the screening test in two weeks — and, just so you know, I’m really good at tests — I’ll officially participate in “an open label, multicenter, single arm study of pasireotide LAR in patients with rare tumors of neuroendocrine origin.”
Let the bells ring out and the banners fly! Treat your eyes on me!* I feel like one in a million!
Even my blood tests are rare, one of which can only be done at a single lab in the US, and one of which needs to be undertaken with the chief of biochemistry at the Queen Elizabeth II Health Sciences Centre. So I feel so special. These tests are to help determine exactly what type of neuroendocrine tumor might be filling my head, but the results won’t affect my treatment over the next few months. In fact, they might not tell me what I have, but what I don’t have.
If that makes sense.
I have little to add to what I’ve written before. While the treatment could have consequences for my heart, researchers don’t think it’s likely. It’s far more likely that I will develop hypoglycemia for the duration of the trial, and require insulin. I’m also expected to lose weight, and my exhaustion will likely become a more difficult burden (since I already have chronic fatigue). I expect to suffer some gastrointestinal troubles, and a few patients in the trial have developed gallstones, and required surgery.
As of today, I stopped taking the old drug that only partially held my tumor in check because I need to flush it from my system. It will be a bit of a worrisome time as that could allow the tumor free reign for a month and, having a mind of its own, it could decide to grow quickly. But I should know if that happens if my migraines get worse, or if my peripheral vision is affected.
Looking at my MRIs with Dr. Imran, I learned that it’s a small miracle that I can see. That little bugger in my head is behaving entirely atypically. It’s pressed right against my optic nerve and, in the overwhelming majority of cases like mine, it grows up. Mine is growing down into my sinuses. Otherwise, I’d be blind now. (and if you only knew how badly I touch type, you’d know what an unmitigated disaster that would be for me). My swntences woold liik likw thos.
The researchers are hoping that this drug will shrink my tumor so I don’t require surgery, and that’s a very good thing (since it’s so close to my optic nerve).
I also plan to make a silk purse out of a sow’s ear. I’m pitching my experiences to my alma mater as a magazine feature as I attempt to resurrect my freelance writing career this week. Such a compelling human interest story.
So I think today was a good day.
What kind of a day are you having?
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One reason I post about my experiences is to keep my family informed. With six brothers and sisters, nine nieces and nephews, I’d spend days explaining everything to everyone. This is just so much easier.
*Everyone remembers this quote from Bugs Bunny cartoons, right?
Oh wow, Richard. Good news. Something new. Wracking, I’m sure, but it must be refreshing to try a new approach with people who are dedicated to solving the mystery. Fingers crossed and voodoo done and wish coins thrown that you’ll stay comfortable and feel progress. Take care.
Kate!
Thank you. That’s how I see it. I’ll leave my doubts behind and assume that this will work out for the best.
I do feel like the team is going to take very good care of me, something that can’t be said of my old endocrinologist. I’m glad to have a chance at good health.
Hi Richard…A “TURP” procedure was recently offered to me. I declined. Hope things work out for you, Richard. All the best, D
Go, Richard, GO!
Just keep this in mind: Because this is a study drug, you will be monitored more closely than standard-of-care, which is a GREAT thing. The side effect profile looks unpleasant but manageable as a temporary and reversible possibility. And you are contributing to future patients in a very real way.
I think you’re doing a great thing and making a very informed choice. Keeping my fingers crossed for a fantastic outcome for you and others participating.
Now SEE what a well-behaved tumor SuperGrover has, re-routing itself to save his sight? And those SAME Superpowers CAN’T WAIT to start shrinking it!!
Richard, I hope this works. Good luck.
David, Laurel, June and Ted. Thanks!
Reading these notes of encouragement made me smile.
Your blog is as fascinating as ever – yes, you must research your magazine/ freelance options! Best of luck with this next stab at culling the little bugger.
Well, crap. I’ve been away too long.
I can only begin to imagine how overwhelming this must be. All I can say is: that thing doesn’t know whose head it’s messing with. I know you’ll come at it with everything you, Kristina, and modern medicine have got.
I’m now crossing my fingers for this treatment to work. But I’ll save my toes for Jacob. :-)
Jackie… Have I told you lately how much I like you? :-) Thanks for reading and for the encouragement.
And Sarah, I’m just so delighted to see you again. I’m confident I’ll be feeling better soon (and although I have lost a little sleep here and there, it’s not been over the things you might expect). It is just as Laurel suggested — my standard of care has been raised several notches, and I’m sure better days lie ahead.
Thanks especially for the kind words about Jacob. If he ever sees the light of day, you’ll be a huge reason why.