Tentative Path Forward

I know it has been a little bit since we have shared anything on here, and there are a lot of questions lingering. I will try to give a sense of where we are at now, so everyone who keeps up with this can at least have an idea.

Deciding between actually doing one of the clinical trials (for which we have very little info, and odds not very good with the info we had at hand), and not doing one of them (just make the most out of what time you have) is a very difficult one. A lot of variables to consider.. no right/wrong decision.. limited information.. etc.. which is what makes it so hard. 
This is her decision 100%. I am here to support her all the way, for whatever she wants to do. I lay out 23 different scenarios on both sides of the decision so she can have an idea of what things might look like one way or another, and answer any questions she has, but it is her decision. She has to be at peace with whatever she decides. Her family and friends are also here to support her decision. 

Quick back track, then we will get back on it..
We took a little camping trip to Bandits Roost campground (an hour away, on Kerr Scott Reservoir) the weekend before last. Just her & I, and the mongrel (our dog) of course. We had the best site there(#28 out on the tip of the peninsula), and had a few days to do nothing but relax, think, talk, pray, talk some more, and enjoy the beautiful views. This was much needed and I think it helped with the tenseness we were both feeling revolving around this decision that needed to be made. Here are a few pictures.
Also, here is a little game you can play.. find the Mongie lol he is in all 4 of the pictures (he always finds a way).

With that said, we have been talking, and praying, a lot about what is the best thing to do. 

We had pretty much narrowed it down to one (out of the 2 trials), if she were to do one. 
That clinical trial is the AMG199. It specifically targets an expression her tumors put off (MUC17), so it is in a sense, more custom tailored to target her specific cancer and tumors. 
Originally, we did not have much info on this clinical trial. There are only 3 hospitals in the USA that are doing it. We found out there were only 3 patients that had been on it at Wake, and that only 1 out of the 3 was stable on it. The other 2 either did not respond or had some issues and had to be taken off of it. Those odds didn't exactly set confidence in signing up for the trial. So we reached out to see if we could find out more info about any other patients that were on it at one of the other two hospitals in the USA. 

During this time of waiting for more info on possible other patients, Christian said she asked God to help show her the right decision with whatever info we did end up getting. There was a week long waiting period between asking for this additional info, and actually getting it, which felt like a lot longer. The info we received was good, and heavy-weighted on one side. 
We found out that at one of the other hospitals there are more patients having a positive response. That makes this decision easier, and I am glad the data was heavy in one direction to help guide this. It very well could have been more balanced and not really helpful in making a decision.
We are grateful to God for making the info available, and weighted to be more clear.

So.. she called Dr. Paluri, and told him she wants to proceed with enrolling in AMG199. 
They began setting up appointments.

We will go up there next Monday afternoon (June 27) to sign consent forms and go over anything else needed.

On Friday July 8th, they have her scheduled for another full CT Scan (chest abdomen pelvis), along with a brain MRI.
These scans are part of the criteria to be eligible for enrollment in the trial. 
She is a little nervous about the brain scan, as she has never had her brain scanned through all of this, and is a little scared of it revealing something there and disqualifying her from the trial (amongst other negatives associated with that situation). Of course we all hope and pray there are no mets there. We talked about it and discussed the fact that she has shown no signs of anything like that being the case, so there is no reason to worry about that right now with the info we have at hand.. easier said than done. 

The full CT Scan (July 8) will be almost exactly a month since her last one (June 6). During that month, she has had no form of treatment (except lingering immunotherapy), so we will be seeing what her body has done in a month in that condition.

The start date for the AMG199 trial is tentatively set for July 18th. That is the soonest they can start it for a lot of different reasons. The sponsor AMGEN sets the start dates.

Over the past few weeks, she has been having some sporadic back pain, some pressure in her abdominal area (which makes her feel full and suppresses her appetite some), and has been somewhat low on energy. The abdominal pressure is more like discomfort than it is pain. Not really anything pain medicine can help with, we are pretty sure it is just from the size of the tumors in her liver pressing on things.
Some days, she has more energy and we will go for a walk with the dog in the neighborhood.
Some days, she is low on energy and relaxes inside all day. 
We just take it day by day and see what she feels like doing, then make the best out of every day!

A few things we need thoughts and prayers for at this particular time:

    1.    She has not officially been enrolled into this clinical trial, so this is not a done deal.
           We need all of the labs, scans, and any tests to go through without any kind of exclusion criteria.

    2.    That the scans coming up on July 8, do not show any new tumors anywhere, and that the
           current liver / lung tumors have not grown exponentially since the last scan on June 6.

    3.    That she does not show signs of anything worsening physically (pressure, pain, fatigue, etc..)
            over the next few weeks while we wait for the clinical trial start date.

Hopefully soon everything will be complete and she gets enrolled. After that, I will share more info on what the clinical trial is going to look like. I have said enough in this post for now I think.

Since the last blog post, she has received an influx of cards in the mail, and she absolutely loved them.
It is a surprise every day checking the mailbox and opening them. Thanks to everyone that has sent cards, flowers, little gift boxes, grub hub gift cards, and other things. Thanks for all the thoughts and prayers. 

Keep the thoughts and prayers (and cards if you want) coming please.
Our address is in the previous post if needed.

We will put up another post when there is more to share. She has been talking about doing another video again sometime, so maybe that will be next.. Stay Tuned!!