Adventures at TGen

Hello hello! 

Well TGen called this week and we had our appointment with Dr. Weiss yesterday! It was nice to have such a quick turn around on getting the appointment set up after this last month of waiting! The first thing I noticed is that there are giant stuffed animals everywhere...coming out of the elevator I ran into three human size animals and then giraffes on my left...It was quite interesting to say the least! 

Once all the paperwork was finished we were taken back to the consultation room while Dad got his vitals taken...fatty is two pounds heavier than he was last week! Can I get a woot woot!

After a little bit of waiting Dr. Weiss came in. He is very nice and much younger than I expected. He started off by asking Dad some background questions that weren't in his chart and gave him some tough love on quitting smoking. After all the nitty gritty questions Dr. Weiss left the room for a few minutes and then came back with the options Dad has.

1. Chemo with Cisplatin Alitma and Avastin- Dad has already done this treatment so we wont be doing this one
2. Tarceva which was the drug I was telling you about last time. After some research last week Dad decided that he didn't want to do the tarceva due to the side effects. The biggest one of concern was the severe rash you get from the waste up. It gives you really bad pus filled bumps and just does not sound fun at all!
3. Send Tissue to a lab called Caris to test for what chemo would actually work for Dad (I had no idea they could do this! Pretty cool) We decided to do this one at a later date if needed becauseeeeee
4. There is a study called DKK1 that we are going to do! Here are the details:
•  Dad has to get a bunch of tests done (MRI's, CT scans, bone scans, bloodwork ect) first. If he passes all of the tests then he will be able to start the trial. The MRI is to see if there is a pre-existing hip bone condition because the DKK gene is found in bones and the drug can change bone structure. (That was only seen in animals no humans so far). 
• If he passes then he will start the trial the following week (the 22nd or 23rd of October). The first day is a 10 hour day! The do exams, labs, and obviously the drug infusion where they really monitor the metabolism of the drug and how it is interacting with Dad. Without going too much into what days he has to be there I will say the schedule is really strict and if he misses a day he would be kicked of the trial. Dad has perfect attendance though so I am not too worried :).
• Every two weeks he will have a 10 hour day where he will get the IV infusion of the drug with labs and tests in between.
• The study runs for 12 weeks and after 8 they will rescan. If he is stable or the tumor is shrinking they will continue and if not he will be kicked off (that sounds so horrible doesn't it? Maybe I should use removed haha) the study. I am not 100% on this but I am pretty sure I understood that when the 12 weeks is over if he is still responding to the DKK drug he will no longer be in a trial but be able to receive the drug.
• Side effects: Nausea, vomiting, fatigue, diarrhea. Honestly nothing Dad didn't experience with the chemo. Dr. Weiss said that the side effects of this drug will most likely be less than his cisplatin chemo...I'd just like to remind you all Dad only had 2 days of side effects on his chemo so this drug sounds pretty darn good!

After a 30 second group discussion Dad decided to say yes to the study! This one can only do good and Dad will still be able to play golf and have the awesome quality of life that he does right now. We also asked Dr. Weiss what his prognosis is with and without treatment. This is a conversation we have all had with Dad this week because honestly its the tough question that we never asked and never came up in appointments. Dad has felt so great this whole processes with no real symptoms so we wanted to know what to look for and what he would probably experience. Bottom line only God has the answer to that question. Dr. Weiss said that in general stage 4 patients without treatment 50% will live 6 months and with treatment 50% will live 10 months. He said clearly Dad is an outlier just from how great he feels and that its already been 8 almost 9 months since his first treatment. The only thing they can predict is if its within a matter of days or weeks due to no eating, sleeping all the time, extreme pain ect.

So for now this is the plan! I know that was a lot to read so thanks for bearing with me. If you are a science nerd like me and want to read more about the study click here. Dad is feeling great, and has been putting his new golf clubs to use! We are so grateful for all of the prayers and support, many prayers have been answered this week and we are so blessed. Love you all!

Getting a tour of TGen

The infusion chairs

Dad's room for the 10 hour days! DVD player included...let the movie marathons begin

I turned around to Dad soaking up the sun after the appointment...it was FREEZING in there!

<3