Lapatipidddy nib something
Hello Blogworld.
So. In a nutshell, the cancer cells inside my bones continue to percolate and mostly ignore the mellow treatments we’ve been dosing with. Therefore: Onto a new treatment. One that includes prescription meds to the tune of $1500-$2000 per month, and me without any prescription drug coverage. But Wait! There’s a clinical trial with this exact med that I qualify for. Usually phase 1 trials are for folks with fewer options… but I think it’s a great fit, and it’s at the least improved my mood for this week.
I start in about a month, with a drug called Lapatinib, which is a very fun name to make fun of and purposely botch when trying to say it.
The Good Parts of doing this study and drug = it might well beat back my HER2/neu positive cancer cells, maybe. It causes a wee bit of diarrhea so I therefore might lose some weight. (In my case that’s a good thing, not just for fitting into fun dresses from the thrift store, but losing 10-20# is good health/cancer-wise too.). The study will pay for extensive tests to check out most of my organs and then some, including a motion picture of my heart beating. I will have to spend more time in SF. Oh, and the bigger picture with this particular therapy study, if it works, and they learn something with me that helps future Mets Girlz, I’m all over it.
The Drawbacks: hmmm. some of the above things could be drawbacks. This drug might make me a bit tired (I’d better get in there and clean up some stuff in my house so I can take happy naps!), and a small chance of a rash on my face. If it beats back the icky cancer, I’m ok with that. And no hair loss at this time, so no wigs/hats/large earrings just yet.
Off to the Trials!!
I think you should demand a MPEG4 video of the heart motion picture, so we can see it here and on YouTube. “Best Oscar, in the Passionate Heart Category”…. Miss Jullllllia.
I know they make you work your pants off in these trials, it’s no vacation. But my god, the drug cost and such… those numbers made ME break out in a rash!
eeeew, yuck! bloody beating mess. It’s unlikely, but I’ll see what I can do.
Hi Julia – Thank you for sharing your journey and your amazing attitude. I’m glad you can get in this trial. We all hold you in prayer and divine light as the beautiful eternal soul, loving, awesome woman that you are. And so it is!
Put me on your list for rides to San Francisco..I’m there.
You KNOW I’ll call you.
Go, Kale! Clinical trials are so 2011 — all the cool kids are doin’ ‘em. Welcome to the Guinea Pig Club!
Hope you’re feeling well, taking care of yourself, and enjoying your naps. Don’t worry about the dust bunnies — they’ll be there when you wake up.
xoxoxoxo
Shotgun
Julia, you know I’ll help you clean and organize–it’s so much more rewarding to organize YOUR house than to start on my own.
And I’m all about clinical trials; it’s a GOOD kind of work. Who knows ? This may be the drug that changes everything. During trying times, some of us pray and some of us clean. And both are needed.
Julia, this sounds perfect! I’ll let you now when I’m working in SF so we can coordinate some fun things around the periphery. We just accepted a short sale offer on our Santa Cruz house and have to have everything moved out by May, so the only thing that will take me back there is to visit you. Also, I’d love to hear about the Florida trip and I have something to share with you about that state as well. Abrazos and positive vibrations…xoxo
Sign me up for the cleaning crew! Ask Alyssa about the annual Big Dump! Each room is emptied and only what they want is returned. I Love the Big Dump Event and we take it on the road!
AND – I am all about clinical trials too – having been involved in heart device and drug clinical trials for the past 25 years.
It’s going to be a Great Spring – Clean out the rooms – clean out the cancer -
I’m happy to drive you to SF if you need a ride. I will even try to clean out my car in honor of the journey.
Julia…take as many naps as you want and who cares about tidying up the house! You are the best and all my positive karma is being sent to YOU. Also, I don’t know how long your visits to SF will be, but I would love to meet you up there and hang out!! So, just give me a buzz if you ever want company. Love to you, Debra
And put me on your list for a place to stay if you want/need to stay overnight for SF visits!
Oh Dear Julia ,
You know I’m here for anything I can help you with. Bone mets love company. We can talk to our bones together. I’m off to Stanford this morning to do the cancer club check-in. No big tests or scans today, just a check-up. Then I’m off to my MBSR training. I’ll take a Body Scan over a bone scan any day! I must introduce you to my friend Roberta, who had bone mets in her spine 21 years ago. Yes, 21 years ago and they are totally gone. We can do it too.
I want to hear about the Florida conference and trip.
lots of love & vegetables, I’m with you all the way,
Bonnie
Hey Julia–
Add me to the list of those wishing you good luck with this trial. Remember, my home and my heart are both open to you if you need a place to stay in SF or just want to, hang out, have tea or whatever makes you happy at that particular moment!
Ditto on a place to stay in SF. Keep cruising forward.
Love