Life in a Clinical Trial

Well if you didn't guess by the blog title, Dad got into the clinical trial!! After three days of tests, blood draws, and MRI's last week they gave Dad the go ahead to start on Monday. After looking over all of his scans everything looked good! No cancer has spread to the bones and the lung and adrenal tumor have not changed as far as they can tell in comparison to the last scan we did...gosh 10 weeks ago already!? Time is really flying by.

Monday was day 1 of the trial which started at 7am. They immediately started blood work and EKG's. At 9 Dr. Weiss and his whole team came in to do exams and got Dad set up to do the chemo using his port. Dad said it was like a scene from MASH with everyone in the room, 8-9 people in that little room! The chemo itself is only 30 minutes! The rest of the day is spent waiting for them to be able to do blood work and EKG's. They wait a precise amount of time (and I mean to the minute) in between each test in order to measure how the chemo is circulating through his body and to make sure it isn't doing anything it isn't supposed to. We spent the day watching a sci fi channel marathon of a show I can't remember the name of and NCIS. Everyone was really nice and Dad already has a best friend at TGen named Brian...but I know no one is surprised :). Although the treatment days are 9 hour days we all agreed they didn't seem like the 9 hour days we had at MD Anderson. I think this trial is going to be a cake walk for Dad!

This is Dad getting his EKG (look at that 6pack)

Dad goes back to TGen for blood and EKG's Tuesday, Wednesday, and Friday during this week. Next week he will go back just one day for some testing and then the process starts over the following week so he will get his next chemo Monday November 5th. So far no side effects and we really don't expect Dad to have any. Dad is feeling the best he has felt in a really long time and for that we are soo blessed!! Today him and Cunningham are playing golf and enjoying the beautiful weather we are having here in Phoenix!

Hotties!

I feel like so much has gone on the last week but my brain could easily be compared to a scrambled egg right now (hence the jumbled blog post). So for now know treatment is great, Dad is amazing, and we are so blessed by all of the family, friends, and prayers around us. Love you all!

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

The Results

Hi! Hope all is well with you all! 

I apologize for just getting this posted, I tried really hard but I think every time I sat down to write my phone rang or something came up :) Well the results finally came in this week and Friday morning we finally got to meet with Dr. K. We got checked in for Dad's 945 appointment and per usual all crammed in the small examining room. We waited about 45 minutes to see Dr. K and the whole time laughed while making jokes about why he was running behind (ex. pacing outside the room because he is so nervous to talk to our crazy family). Once Dr. K came in he deeply apologized and Dad was the first one to speak up and say that whats done is done and we are there to here the news not dwell on the past. I think Dr. K was a little relieved, but went right into saying that the results were not particularly good. 

Dads tumor cells do no have the egfr mutations that they were looking for. Why does this matter? Once chemo stops doing its job (In Dads case since the adrenal tumor wasn't shrinking) they go to a second kind of treatment called Tarceva. Tarceva directly targets the egfr mutations and since dad doesn't have those mutations Dr. K said it gives us three options:

1. The first is to do an old school form of chemo. Dr. K said he doesn't recommend it at all because it will severely diminish his quality of life. Dad is doing so well so we said PEACE OUT to that idea before he even finished talking about it :)
2. The second is to do the Tarceva anyway. There is no way to know that it wont work, and about 10% of patients without the egfr mutation see results using the Tarceva.
3. The second is to go to a hospital called TGen (The link takes you to their 411 on their website). TGen specializes essentially in clinical trials. They are the best of the best at what they do and Dr. K said he has a good friend over there that he would recommend us to.

We decided to go ahead and get all of Dad's info sent over so we can get a preliminary meeting started as soon as possible. Once we meet with Dr. Weiss at TGen, hopefully early this week, then we will decide from there what exactly we are going to do. 

Dr. K also wanted to get an X Ray of Dad's knees because they have been bothering him the last few weeks. The Xray would allow them to see if the irritation was cancer or something else. While he was doing that Jill came out and spoke with the rest of us and explained how sorry she was all that this happened (began tuning out here..). She assured us that she would be the one sending Dads info over to TGen and there would be no delays whatsoever...the rest isn't even worth writing about. The X Ray tech said he didn't see anything on the Xray which was awesome, hopefully Dad's knees feel better soon!

I will keep you all updated as we know more, but until then Dad is feeling great and looking forward to his new golf clubs that are coming this week :) Thank you as always for your continued prayers, we are so blessed to have the support team we do!

Finally got a picture with Juanita, one of our favorites at MD!

Dad and I had a really healthy feast last week- Fries, Motzarella Sticks, Milkshake, and a salad :)

Family date at the movies last weekend!