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!

Never Alone

Well I am writing to you tonight a much calmer version of myself vs. the demon I felt (by felt I mean know) I was earlier this week. 

Remember how last week we were informed that the results would be in by Tuesday and we were to call to double check? Well Dad called Jill around noon Tuesday and she let him know she was going to find out and call him back. A few hours later Jennifer, who processes the lab send outs, called Dad to let him know that the results were not going to be in that day. She also informed him that the tests had been sent to a lab in California and would probably not be in until Wednesday afternoon or Thursday morning. This is when demon Layne took over...sorry to everyone that encountered me in any realm this week...

We were honestly all at a loss. After the glimpse of hope that Mike had given us last week about this being taken care of, well it was all out the window. Mom is good friends with the CFO of Banner and he had already been caught up on Dad's situation, but Mom asked him to wait to intervene until we saw how last week's communication with Mike played out. (Terrible run on sentence- forgive me Kristen) Tuesday, she asked him to intervene and boy was he on it. Within an HOUR all of the "key players" of MD Anderson were involved. Mike, the CEO of MD Anderson, Jeff, and every director of every department involved in the situation were working together to figure out what they needed to do to rectify the issue at hand.

This morning I had received a call from Mike. As always, we had a great conversation. He let me know how sorry he was this has happened and he knows that a million sorry's couldn't change what has happened. Unfortunately everything that could have gone wrong in this process did but he put together a timeline of events from the date of the biopsy through today. Here is the timeline that Mike emailed me:

9/5/12  -  O. J. Alexander’s procedure; the fine needle specimen was obtained.
9/10 /12 - Dr. Perry reviewed the case and additional stains were ordered.
9/12/12  - Dr. Pargman reviewed the case with special stains and upon discussion with Dr. Klueppelberg he asked for an EGFR and ALK by FISH  be sent out.
9/13/12  - The order was placed by Dr. Klueppelberg.  We must have an order to process the specimen for send out.   The blocks were requested to be sent to us from SQL for the additional testing.
9/17/12 - The blocks were received. The two tests are sent to Response Genetics laboratory in California and take approximately 10 days to 2 weeks to perform and get results returned to us at Gateway.
9/20/12 – Specimen taken to dock and sent via Fed Ex to Response Genetics
9/24/12 -  Fed Ex specimen pick up did not occur until this date.  Delay in pick up from Gateway dock under investigation.
10/3/12 – Results expected from Response Genetics.

He talked it through with me and we both agreed the communication was the biggest issue at hand. The timeline of events did NOT mirror what Jill had been communicating to us in the least bit. As we finished our conversation he let me know he really wanted to speak with Dad but wanted my input on how he was doing and if he wanted to talk. I literally laughed and told him Dad has been the most positive and non-crazy out of all of us! They spoke soon after our conversation and it went well. 

So back to the timeline. I must have read it 25 times now. Here are my issues:
1. I'm sorry (but really I'm not), but DO NOT tell someone something just to tell them. Which is what Jill has been doing the last month.
2. If you don't have the facts, be honest with your patient and own up to it. People appreciate honesty more than smoke being blown up their rear. 
3. Four days. Dad's specimen sat on the dock for. four. days...four days. Climate and time sensitive goods just sitting for four days. Hopefully those slides are good...

Ok demon Layne could go on for an hour about her frustrations but I will spare you. Bottom line is they truly got their crap together and we are seeing the light at the end of the tunnel. Dr. K called Dad right after he got off the phone with Mike. Dr. K apologized multiple times and Dad could hear the disappointment in his voice of all that had gone wrong through this. Dr. K said that next week the results will be in on the 3rd (as stated on the timeline) and we will meet with him on the morning of the 5th. Immediately following that appointment Dad will go up for treatment.

With all of the anger, frustration, and confusion the last few weeks have brought, I am so grateful to see that there are still people at MD Anderson that will drop what ever they are doing to assist the needs of a patient. The efforts of Mike and his team have really brought demon Layne down 5 notches and I think all of us are feeling a lot better now that we know exactly what is going on (for real this time). This last few weeks have really shown how united team-OJ is and how through the ups and downs Dad is never alone in this fight. We love you Daddy, fighting for you always!

Well, I have to be honest
As much as I want it
I'm not gonna promise the cold winds won't blow
So when hard times have found you
And your fears surround you
Wrap my love around you
You're never alone

-Lady Antebellum "Never Alone"

Alexander-Land

Hi all!

It has been quite the few weeks here in Alexander-land. Dad was scheduled for his biopsy on this adrenal tumor on the 5th. Dad had to be there at 630 am to check in...but we got there and realized we never asked where "there" was. It was clearly not MD Anderson because the security guard was not about to let us in anytime soon so we made our way to Banner Gateway where we were thankfully supposed to be. Cindy and I got to go back with him until they wheeled him back...and let me tell you, he was lookin GOOD!

The biopsy was a CT guided needle biopsy where they basically use the CT scan to make sure the needle has obtained the tumor cells needed. The procedure took a little over an hour, but then he had to sit in recovery for two hours. Don't worry, he tried to sweet talk to nurses into letting him out early about 5 minutes into recovery.

Dad munchin on graham crackers and coke in recovery

5 minutes later we were out!

Dad was nice enough to share

 

Once released, Dad could hardly feel the spot where they did the biopsy unless he sat down forcefully. Woot!

Uncle John flew in last Monday night which is always exciting for us! Dad and Uncle John played golf on Tuesday for Cunningham's birthday and they had a great time especially since the weather has cooled off!

Well, Wednesday rolled around and we got a call in the morning from Jill, our nurse navigator. She was calling to let us know that the biopsy results were not ready and we were going to have to reschedule for next week. WHAT! We were all really confused so we got a hold of Jill again to ask why (in worries they had found something they weren't telling us and needed to do more tests). She let us know that they are specialized tests that take longer and they shouldn't have scheduled the appointment for that day in the first place. Although frustrated for the lack of notice, communication and answers we realized we couldn't do much other than feast and wait until this week. 

Dinner after the appointment cancellation

Uncle John flew back into town this week (we seriously could get used to him being here!) for yesterday's appointment. Dad got a call from Jill the nurse navigator letting him know that the test results were still not back and that we should call back Tuesday to see if they are done. Excuse me? They aren't done? WE have to call? Oh boy were my insides burning. I was actually already at MD Anderson yesterday getting some school work done so I packed up my things and went to get some answers...shout out to all who were the innocent bystanders during this process...

To make a long story short I had gotten a hold of the biopsy results and tracked down Jill to ask why I was holding results in my hand yet they were saying the results weren't done. She informed me that I was holding the preliminary biopsy results and they need to do tests on the tumor cells to determine the best "chemo cocktail" to target the tumors. She proceeded to tell me that they actually haven't even started the tests because the lab is so backed up with other labs.

I completely lost it and was so angry and frustrated that a lack of man power was what was keeping my Dad from getting treatment. I can completely understand that things happen and if they needed a few extra days, fine...but TWO WEEKS!? Absolutely inexcusable not just for my Dad but for any patient. These patients are here fighting for their life so to have just wasted two weeks of time over an issue such as this completely infuriated me.

I left MD Anderson with a lot less hope in the staff than I had going in so I contacted Mike, the Administrator of Banner MD Anderson/Gateway that we had breakfast with a few months ago, to make him aware of the situation in hopes he could fix this problem for future patients. Today, I received both a phone call and an email from Mike. He was completely appalled and said lack of employees should not be and is not an issue because he has the funding to hire many more if needed. Without going into full details of the conversation I will say we had a great chat and he is going to be following up with me tomorrow after he gets to the bottom of the situation. Next week we WILL have results and we WILL have a new treatment plan for Dad...stay tuned folks.

Other fun stuff that has been going on in Alexander-land? Dad is the mass intention for the 8pm mass at the ASU Newman Center for the month of September! I can't even put into words how incredible it is to hear Dad's name be called as the mass intention knowing that everyone in the church at that moment is praying for him. Dad and Cindy attended with me this past Sunday and it was one of my most special memories! If anyone wants to join me 9/23 or 9/30, let me know :)

Also, Dad is going to start volunteering as a golf coach for the Mountain Pointe Girl's Golf Team!!!! I AM SO EXCITED THIS IS FINALLY HAPPENING! I had been trying since July to get in contact with the DV Athletics Director, with no response, but I finally heard from the MP coaches last week. Dad met with Pete Monday and he is going to start the paperwork tomorrow so he can help out the tail end of the season and the off season!! Dad is so great with kids, loves golf, and just so happens to be not working so it was just a no brainier on how perfect this would be!

Through all the frustrations we are still so incredibly blessed and I know God has a great, great plan ahead for Dad. Thank you all for your continued prayers and support, it always means so much! Will keep you posted on how next week goes!

On to Plan B

Hi all! Well it has been a pretty uneventful few weeks! Dad has been feeling really great and been getting out on the golf course alot. It has been so hot in Arizona though I don't know how he doesn't melt to death.

Him and I also went shooting (or as Dad likes to say.."pop some caps") last week which was so much fun! He hadn't shot a gun since he was in the Navy but let me tell ya, Dad still has it!

Yesterday was CT Scan day. We were all wondering if the dye he has to drink before would taste as bad since he isn't getting as nauseous...well it still tastes terrible haha dangit.

Today we met with Dr. K to review the results of the Scan...here are the deets:

• The main lung tumor shrunk 2mm...not as significant as last time, but progress is progress.
• There are what the call "satellite nodules" or lesions appearing in the upper left lung near the main tumor. They are about the size of a piece of rice and they aren't sure if they are related to the cancer or if they are signs of an infection. Dr. K said Valley Fever was a possibility so he got tested for that today. We cant biopsy them because they are so small so it is more of a waiting game to see if they change.
• The tumor (actually we aren't completely sure its a tumor, the report says metastasis so we will go with that) on the adrenal gland grew from 1.3x1.1 cm to 3.0x2.3 cm. This was a big concern for Dr. K obviously so he said no chemo for Dad today. Dad will get a biopsy done over labor day weekend and since Avastin (chemo drug) promotes bleeding Dr. K wants it out of Dads system for a month. 
• His labs look really good with the exception of an elevated white blood cell count which means his body is fighting something!

So what now? Well when they do the biopsy they will test for the lung cancer gene to see if it is related to the lung cancer. If it isn't, they will start a new chemo plan that will hopefully work better.  He also let us know of a few other options including two oral drugs and an experimental study that has proved great success at TGen (Translational Genomics Research Institute). Radiation isn't an option because Dad needs whats called systemic treatment which means treatment that targets the whole body, not just one location which radiation does. We are also going to start scanning every 2 months instead of 3 so we can see change without it being too early or too long.

As of right now Dad is scheduled for the biopsy on the 3rd (yes that is labor day, yes they are closed, yes that date might just have to change) and meeting with Dr. K on the 14th to figure out what plan B is! 

Everyone, especially Dad, is doing well. We have a TON of hope and faith in Dad's team and know they are providing the absolute best care they can! All we can do is take it one day at a time and keep doing all that we have been doing! Please keep Dad and his medical team in your prayers, and if you have time leave him some sugar below :) We will keep you updated, have a great week!

Live For The Moment

Hello! I am writing to you from my new cable-less, ethernet cable savy apartment...It's very "starving college student" if I do say so myself. I am sure many of you can't even imagine what this world feels like anymore, but my roommate and I think it is pretty awesome. It has been a busy, but wonderful, three weeks! Dad's melanoma surgery went great! We were and continue to be impressed with Dr. Griego's work. He got all of the melanoma the first time and Dad's scar is healing really well. He was pretty sore for about a week but is back to a painless world now. I wanted to post the pictures, so if you have a queezy stomach...scroll down quickly :)

This is Dad's face after the melanoma was cut out. They left it open for a day (covered by a bandage of course) before they stitched it.

This is the stiching! Right off the bat you could barely see it! There are three layers of stitches that will dissolve in the next 3 months. 

Here is Dad just two weeks later! Can you tell?!

Dad and Cindy went up to Portland last week to visit Cindy's daughter and family. They had such a great time going to the beach, the fair, and everything in between!

Regan, Dad, and little Maddie...she is so cute!

My sister Kristen has also returned home from her two month adventure in Scotland, Ireland, and London. We were so ready to have her home & it is so great to have the whole family back together!

Chemo yesterday went well...for the most part. They changed their procedures so now when we get to MD Anderson for blood work, the nurse will place the IV in the port and draw the blood from there. Previously they drew blood from his arm and Cristine, our chemo nurse, administered the IV in his port. Well poor Dad came out with watery eyes and said that it really hurt. He asked the nurse if she had done a port before and she said "Well, I did one this morning". Hopefully she can get her act together in the next three weeks!

Dr. K said all was well and he was really happy with Dad's scar on his face! He also let us know that he planned his next vacation around Dad's schedule. I think he learned his lesson from his last vacation...We aren't difficult I swear! We will get to do another CT scan on 8/20 to see the current progress. Chemo went great as usual. Dad got a little stomach queezy but only for a little bit. Then, of course, we feasted after!

I feel very blessed on multiple levels, including that Cristine our chemo nurse has inspired me to go back to school and become and oncology nurse! God has been putting this on my heart the last few months so I finally buckled down and I start school August 20th! I'm sharing this with you all as a reminder to LIVE FOR THE MOMENT! Do what you love, life is so short to let worry get in the way of what you truly love and want to do. Even in the face of a negative experience, there is something greater that will come out of it. Thanks for your continued prayers, we appreciate you all from the bottom of our heart!