The lung is holding steady; unlike my emotions.
I was overly nervous about yesterday’s check up on the lung for many reasons. I’m not feeling symptomatic but the slow progression for 6 months makes a girl antsy. Will now be the “for real” time that I need to change my Crizotinib? What is my new medical oncologist going to be like? Do I need to get on the ball and secure affordable lodging and transportation for the trial in Seattle? So many details have been cluttering my head.
It was almost laughable when I woke up at 3:15am today, still happy about the outcome of the appointment. I could have benefitted from playing a meditation track on my iPod because I was still flying high.
My new oncologist, Dr Arial Lopez-Chavez (Dr L-C), is delightful. He’s no Dr Sandler…but only Dr S is Dr S. I have no problem trusting Dr L-C. I must be honest, what’s not to like about a doctor when they enter a room, introduce themselves while shaking your hand, and tell you you’re stable?
Later in our appointment he went on to explain, when I reach substantial growth to warrant a treatment change, a second generation ALK inhibitor trial will be offered at OHSU. Excuse me?! A drug that could be very effective at controlling my cancer, with an oncologist I click with, 20-minutes away? Easy! (The Seattle trial only had one of these elements.)
The trial agent is CH5424802 (aka: RO5424802). Soon recruiting for patients who are resistant to Crizotinib at OHSU. Stay tuned…
This makes me very, very happy! (Albeit a tad jealous that you get to avoid the endless annoyance of putting your real life on hold to fly cross country every 2 1/2 weeks for phase one trial treatment. Who can I commiserate with?) xoxo
Me = very happy too!
I’ve been doing the happy dance ever since we corresponded late last night. It’s crazy what your brain will put you through, isn’t it? You had to go through all that and here, it was (technically) for nothing. Of course, that probably won’t change what you put yourself through the next time, right?
Yes, CH is the “other” 2nd gen ALK inhibitor. (You can do that or LDK378, but not both.) I’m glad to hear that CH is more accessible for you.
I’m also glad your first experience with the new doc was a positive one. If my oncologist ever leaves, there will be a hissy-fit the likes of which the Commonwealth of Pennsylvania has never seen!
Can’t beat a doctor that you click with. I feel very fortunate to have two back-to-back.
Next time…oh. I don’t want to think about it yet.
I am glad things are going so well Kim! smiles and hugs babes!!!!
Thank you Matisse! The W’s are both very happy.
The upcoming trial in Portland sounds really exciting and I look forward to hearing more about it. If you do ever decide to go to Seattle though – they have a wonderful “cancer house” that just can’t be beat for comfort or cost.
You mentioned the cancer house before. I’ve got it written down with my SCCA packet. Thanks for sharing!
Thank you Sharon. Hope your summer is going well for you!
Dancing is great Patrick! …as long as it’s not to “I’m radioactive…radioactive”… 🙂
Stable is very good!!! Now you can work on getting back to a reasonable wake up time!
Good news! I am so happy for you! Mark H.
I look reason in the eye and turn my cheek! Wait…that’s not what I meant… Oops.
That’s great news! Portlandia is where it’s at!
Both SW and I are so thrilled that I have a good treatment option in Portland. We would have made Seattle work but it would have been tough for certain.
Woot, woot! What amazing, amazing news! Love you!
xoxo Ms A!
happy happy happy dancing going on here downtown!! Great update!!
I like all this dancing!
Oh Kim! Hoorah! I can’t wait to see you and give you a giant (gentle) hug 🙂
I like hugs as long as my ears are not burn by WBR!
thanks for update and happy to hear the news too that things are steady!
It’s a relief. But, as you know, growth is apart of the trip. One day…
Hope all is well with you Gwendolyn. xo
things are ok with me, thanks, hope you have a really nice vacation, love, gwendolyn
So happy for you, Kim. My little eight year old is going steady on the Crizotinib for over two years now. God is good!
It is wonderful to hear she is still responding. Hopefully, tolerating them too.
Good drugs are great!
What awesome news!!!! I’m so happy you like Dr. L-C!!! And the trial at OHSU business couldn’t be better!! Woo hoo!!!!!