Clinical Trial Phase 2 LDK378, Day 1 Day 2

LDK 378 Day 1
Yesterday was a almost a full day spent at Stanford Cancer center where I had to get up way early for a CT scan, fasting, blood draws (twice), and EKGs (twice), as this was the protocol, requirements , guidelines and process of my first day of the Phase II, Clinical trial of LDK378. This trial just started the end of May and to begin the application process, I had to stop taking Xalkori for about 3-4 weeks ago. It was a LONG day at Stanford and my day started out at 7AM, driving on an empty stomach.
Afterwards by 2PM, after having swallowed 5 giant pills of 150 mg each (for a combined 750 mg strength) in front of the nurse, I was finally done. But feeling sleepy, hungry, exhausted, I really wanted to head home for a nice nap, but, nope, I had to head into work.
Normally my Stanford appointments are on Wednesdays, but due to the CT scan requirement, for this and the next appointment, it was moved to Fridays.
Getting accepted into this clinical trial took 3 weeks of hard work of labs, MRIs, bone scan, and of course a weaning of Xalkori and a lot of  paperwork. If you Google LDK378, there's been lots of great news on how great this new second generation of ALK pill is. The results turned out so well in its initial Phase 1 trial, that its "Data show 60% overall response rate in 78 patients with ALK+ NSCLC taking LDK378 at 750 mg; will serve as basis for first filing in early 2014 http://www.novartis.com/newsroom/media-releases/en/2013/1706664.shtml.
I hope get the excellant results that others have received. Praying hard and dreaming big!

My reaction to LDK378
So in my day 1 of this LDK trial yesterday, after swallowing all 5 150 mg of LDK378, which required lots of water drinking and forcing it down my throat as the pills are like horse pills, pretty big to gulp down, I felt fine initially.  But I knew, eventually, my body would vomit it up. And by 5 PM, barely making it onto my driveway, I had to run to the bathroom and violently, vomit. I knew, for sure, my stomach would not tolerate this 750 mg, or 5 pills down easily. and that was that. Back to the feeling miserable of vomiting episode again.

Day 2 LDK378 
The directions were that I was supposed to take all 5 pills each morning before eating at the same time everyday.  But, wait, an empty stomach first thing the morning? That would guarantee a repeat vomit episode again for sure. So, I cheated and gulped it down after eating a little breakfast of bagel instead. But, within 2 hours, my stomach would not take it and again, vomit happened again.
I will have to discuss these vomitting episodes to my Dr Monday. Until then, it's a bummer, the 750 mg or 5 pills each morning, isn't working for me. And I was really, really hoping, my body would take it.

What now? I suspect, my Dr. will allow me to lower the dosage or split up my pills throughout the day. Like, take 2 in the morning, 1 in the afternoon and 2 at night.  That would still be equal to 750 mg daily.  On top of that, did you know that I have my "regular", routine of 4 other types of pills I also take daily too? Yup. I  do. So, if you want to know how many pills I am popping each day, with thie LDK378 of 5 pills per day, I pop a total of 9 pills daily! OMG, that's a lot of me and if anyone knows me, knows that I don't like to take pills. Those other pills are: 1 Baraclude (for health liver enzymes against Hep), daily multi vitamins, vitamin C & D, and lastly, my low dosage of birth control pill (as required per the clinical trial).
I hope my Dr will allow me to split up my LDK378 throughout the day or lower my dosage. Will update you next week. Lots of Love.

Update

Hello friends, followers, and family.  Sorry for the long break from blogging. Truth is, we've been super living life and once the Ethan and Ellen started their Little League Baseball season, along with their other activities (besides school and homework) like soccer, swimming, piano (at one point), Kumon and the girls weekly ballet dance classes, between their activities, working full time, weekly doctor visits and or scans/MRIs, Bone scan, acupuncturist appointments, baseball games, kids practices, recitals, performance, walking the dogs, play dates,  and everything else, there was no time for blogging.
Other than the 1.5 week where I got so sick from eating the Costco recalled organic berries (I made smoothies with them), where I had to go get a "just in case Hep A shot" from my PCP (Primary Care Physician), I've been doing well. But, for the 1.5 week of this episode though, I was miserable with daily vomiting that I felt so horrible, my stomach and nausea so bad, I barely made it the day through with enough strength to make it into work. I felt so weak, I almost fainted. It was a horrible, bad case of food poisoning and thank goodness, it's over and I've fully recovered.

But, without further ado, without a moment's free, after the kids last baseball game and dance performance, I was off being busied spending time with the kids on  a quick Beach family weekend trip, and also a camping trip, as well as planning and quickly having to sign up the kids summer camps and activities. Now that the kids activities have slowed now, I have just a little free time to blog.
So from the last blog, I had posted about my dream trip to Vietnam. Thank you to the few individuals that donated and contributed. Your continued support warms my heart and I am ever grateful. But, with very little funds raised, I can't go. I am not such a good marketer or fundraiser as you can see. I wonder how others do it? Marketing and fundraising definitely takes talent and lots of effort and time and of course, knowing powerful, lots of people/friends with money helps. But, in my case, I lack all of the above and can't even raise any money for my own medical and dream trip. I think the total donations were I received was like $150? Yup. That's it. Now, do you think I can go to Vietnam on $150??? Probable not. And I actually, tried looking and applying for one of those "Make a Wish Foundation" for adults like me, but there is none for California residents. So, of course I also don't qualify to apply for the Dream Foundation since I work and don't financially qualify.

So Vietnam is a no go. Simply, we can't afford it. And also, summer's way too humid and miserably hot, that it's not an ideal time to go. So, my plan B is, well, take 3 weeks of in Aug and hang with with the kids and also finish up taking care of "personal, business affairs and paperwork".  Traveling is hard, and probably not a reality too soon since finance is an issue, and as long as I am spending time with my family, really, that is all that matters.Any place with the kids, whether its the local museum or nearby beach, that's happiness to me and the kids.

Health update
From the latest scans as of yesterday, everything shows stability. Except that last week's latest brain MRI, shows 1 suspicious spot grew from 8 mm to 10 mm. The doctors wasn't sure it was due to "swelling" and that the spot would "die off" due to my recent 2.5 month ago whole brain radiation. But, in light of this uncertainty, my Dr., recommended that I switch to a new drug and begin the process of applying for the latest phase II clinical trail of the second generation of drug of Crizotinib, or LDK378 at Stanford. The trial just opened up on May 28, and I would be participant #3. I just started taking this new drug yesterday. More details in the next blog. Lots of Love.