Finally Some Movement

So I have not posted for a while.  The main reason is I haven't had anything to post.  The doctors from USC and from Huntsman have been discussing the actual diagnosis.  Huntsman has said all along that it was a mutations of melanoma.  The doctor at USC really wanted to push it to Sarcoma.  My brother pointed out that maybe because he didn't want a black mark on his study because it didn't really help me.  After 4 months of back and forth we are moving forward.  This Thursday I am having some injections called TACE.  This is a minimally invasive procedure where they will use a catheter to go into and follow the veins to the tumors in my liver.  Once at the tumors they will inject them with TACE and cut off the blood supply in hopes that they can no longer grow.  I had a PET scan a couple of weeks ago and they now found some spots they are concerned about on my right lung.  With those lesions they are going to do something called abrasion where they basically burn them or freeze them off.  Something like they would do with warts.  I will be staying overnight on Thursday so they can monitor me and make sure that I don't have any adverse reaction and to the treatment.

Some other life news, Easton broke his arm a month ago and already has the cast off and back at it.  Madison tore her ACL playing soccer and is having surgery on April 22nd.  I wouldn't recommend doing any of this by the way.

We are all still doing really well and fighting the good fight.  Even though sometimes life throws you curve balls, you just have to be patient when you swing and you can knock it out of the park.  Our homer is coming soon I can feel it.

Soccer and baseball has started so needless to say we are staying busy and it's only going to get busier.  We have some fun trips planned this year and are excited for them.  Some beach time and some history stuff.

Thanks for all the prayers and support.  We definitely feel the love from everyone.

#cancersucks #fightlikehell

Sarcoma Meeting

So I met with the Sarcoma doctor today.  Dr. Chalmers was her name.  The treatment for sarcoma is a year of chemo therapy.  Based on what she has seen and all the details she has she doesn't believe that it is Sarcoma.  There are some specific markers for sarcoma but my initial tissue samples did not test positive for these and my secondary tissue samples did not test positive for them either.  Sarcoma is a cancer that is typically found in the soft tissue.  In legs, arms or other places of the body.  This is not acting like a sarcoma at all.  They said sometimes Melanoma can mutate a little when it goes from one organ to the next and look a little different.  This is acting a lot like melanoma.  The path going forward is to treat it as if it was melanoma.  We are going to do a full body PET CT scan just to check some other areas.  They are also going to do some testing for some very rare mutations of sarcoma.  In the meantime I think we are going to do so local treatment.  This means they are going to cutoff the blood flow to one of the tumor to see if we can prevent it from growing more.  This is done by a radiation oncologist and is considered radiation therapy.

I have been feeling pretty good.  My stomach gets a little upset every now and then.  We are still extremely hopefully and optimistic about the outcome.  We love the support we get from everyone.   The little packages left on our doorstep and notes every now and again brighten the day.  The prayers and thoughts are always felt.    We are always overcome with the love we are shown.

#cancersuck #fightlikehell

Rough Week

So this last Saturday I started having some pretty good pains where I had the biopsy done.  My brother in law prescribed me some Tramadol to try and help me get the pain under control but it didn't numb the pain to the point I was comfortable.  So I ended up going to Huntsmans version of an instacare called the Acute Care Clinic.  While at the ACC they drew blood and did a CT scan.  Neither of which showed anything changing much. The doctor felt that the pain was due to the tumor pushing on the outer wall of the liver.  She wanted to give me oxycodone but I said I preferred something different so we went with hydrocodone which still helps the pain.  All this went down on Monday.  It is now Saturday and a lot of the pain has subsided and I am only taking Tylenol occasionally which is also a good thing.

Also this week I got the results from my biopsy at USC.  Dr. In thought it was something called PNET Sarcoma.  This would mean a completely different treatment then what we have been doing.  Dr. Voorhies said he would be surprised if that is the case because they tested for sarcoma and it tested negative for it.  So at this point we have postponed the next step of treatment  until they figure out what it is.  They are doing some more testing on the tissue to see if they can agreee on something.

Merry Christmas and Happy New Year

Many have been asking me to update the blog.  It seems like I have struggled to find the time to do so.  I seem to be getting busier all the time.  Could be that we started a new business a while ago and are starting to attract some clients which makes my available time less and less.  More clients is a good thing but it just means more work.  The business we started is account services for Nonprofit organizations.  You can check out our website here http://www.apexwest.com/.  If you know of any nonprofits that need help in this area, send them my way. 

Another reason I haven't posted in a while is because I went a long time (for me) without a doctors visit.  We went to LA on 11/30 and didn't return until 1/4/19.  Over a month between visits.  It was weird not knowing about blood work and other things that you get updated on every time you visit.  This last visit was our last one to LA.  We completed the trial and didn't see enough results to warrant continuing on with it.  What does that mean?  Well, basically I have several tumors in my liver.  Some of those tumors didn't change much and may have shrunk a small percentage.  One of the tumors grew a little.  The doctor felt it was time to try and do something else.  While we were there he wanted to do a biopsy on the one that was growing a little so we did.  We have not heard anything back on that biopsy yet so nothing to update there. 

What are the next steps?  I returned to Huntsman and visited with Dr. Voorhies on the 10th.  We talked about some things and had the same suggestions as Dr. In at USC.  He thought some sort of liver directed therapy (ie. radiation treatment) with immunotherapy might be the best next step.  He is meeting with his tumor board next Thursday to further discuss my case and we will talk after that.  We also talked about the TIL procedure and possible clinical trials with that.  I can't remember if I have explained what the TIL procedure is but basically what they do is remove one of the tumors and extract all of the white blood cells they can find in that tumor.  Then with those blood cells they multiply them by as much as 50 billion times and infuse them back into your body.  The concept is that those cells recognize the cancerous cells as something bad in your body and attack it and remove it.  This procedure is pretty intensive but has supposedly seen some pretty good results.  This trial is available at MD Anderson in Texas.  We are still trying to get more information on it. 

I still feel pretty good for the most part.  Other than an upset stomach for the last little while I have felt pretty good.  Hopefully that is because of some sicknesses that went around during the new year celebrations and I am working on getting past it. 

We spent a bunch of time over the break in Morgan, sledding and hanging out.  Christmas was good and we spoiled our kids way too much.  We had a bunch of sick people around us too so that wasn't so much fun. 

Pac-12 Championship

Well I was in LA for the Pac-12 championship game.  We had to find a place with TV's for dinner so we could watch it.   Ended up at Buffalo wild wings.  Game sucked, our offense has been too finicky this year.  Now we will be in a crappy bowl.  I guess at least the Jazz picked up a shooter who is almost as old as I am.  He looked good against Charlotte so hopefully that continues cause the Jazz are not living up to expectations right now.

As for my treatment yesterday, it was a little different than normal.  My uric acid levels have continued to climb so the doctor had some drugs put into me through an IV that is supposed to help it.  Hopefully it doea,.  I had a CT scan as well.  The doctor said that the one we had been injecting looked like it had shrunk just a little bit.  The one we hadn't been injecting definitely grew.  This is not really knees because we have seen this in the ultrasounds every time we go.  This treatment is the second time we treated the growing tumor.  The doctor really wants to do another CT next time I am out there to see what the tumor that is growing is doing since we have injected it twice now.  Hoping for it to shrink a little.  With some of the side effects I saw last time the doctor thinks that could possibly be the drugs kicking in and working.  Obviously hoping for that.  This time I had an allergic reaction to something.  Immediately after the injection I got hives.  Nurses came in and gave me benadryl which seemed to knock it out pretty good.  There was some worry about going forward with the trial because of this but the doctor is chalking it up to the medicine I got for my uric acid levels.  This was also the last time I will get the Ipi infusion.  You typically only get those 4 times.  If we don't see any progression with the rumors the next step is to go back on Pembro.  The doctor said that sometimes when trying to change your immune system going back to something else works because the immune system could now be a little different.

I feel good today and hope to continue feeling good for a bit.  We are going after it and will stay aggressive with it.  Just trying to find the right combination to get rid of the tumors.  I am confident we are getting closer to finding it.  Love you all!  Thanks for the prayers!

#cancersucks #fightlikehell

Thanksgiving

I hate starting off with some bad thoughts but man last week was rough.  This will probably be too much information but it seems appropriate to share.  I started getting a rash on November 16th.  That rash escalated into a full body rash that turned me red from head to toe and pretty itchy on top of it.  On November 17th I started feeling like I had the flu.  Chills followed by hot flashes headaches and fevers.  This lasted for probably a week.  I didn't make it to work the week of thanksgiving because of this.  I talked to the doctor and he gave me some steroids for the rash and felt that those were some of the side effects of the treatments.  On thanksgiving I was fortunate to receive a priesthood blessing (blessing of healing in my faith).  That night I felt a distinct difference and started to feel much better.  Now I feel pretty good and seem to be back to normal just in time for another treatment.

We have really been blessed by people through our trials.  Some of you know that a month ago our Yukon's engine broke.  We had no choice but to replace it.  Obviously this repair was not cheap.  Jen and I have been smart with money and have some savings built up.  We would have been able to use that savings but it would have put a dent in it.  My dad's boss caught wind of this trial that we were fighting through and he offered to take care of the repair for us allowing us to keep our savings built up.  Really is a huge blessing for us.  There have been so many others that have done great things for us, it is hard to mention them all.  We are still plugging along and doing what we can to get better and return to some sort of normalcy.  We love you all and thank you for the prayers and support.  I am confident that they are working and we are in the road to bring cancer free.

#cancersucks #fightlikehell

Blessings

Got back from another visit this weekend.  The blood work was okay except my uric acid levels are on the higher end.  Doctor wanted to get them down so he prescribed me some medicine to help.  Really the first prescription I have had to take and it irritates me a little bit.  I am stronger than that and shouldn't have to take these things, but doctor's orders so I do what he says.  The appointments are long and  could be a lot shorter.  The trial manager is such a disorganized mess.  She completely forgot that I was coming and didn't have anything ready.  We were there from 9:00 until 5:00 pm.

During the injection the radiologist looked at the 2 lesions.  The one they have been injecting hasn't been changing much which is good.  The one they haven't been injecting had been growing.  I guess the clinical trial protocol allowed them to inject any of them so they decided to inject the one that had been growing this time.  Hopefully it does down or disappears all together.  That night we went and saw Bohemian Rhapsody.  I thought it was well done and a good movie.  I always liked Queens music.

You know that saying when it rains it pours?  That's what it has felt like this last little while.  If it isn't one thing, it is another.  Fortunately we have been blessed and been smart over the last couple of years to be able to handle some of these things that have been thrown our way.  It isn't without a little help though.

Special shootout to those who have been so extremely generous in their help for me and my family.  There are many of you but especially Mark Novakovich and the Control 4 team as well as my grandma and grandpa Spilker, my parent's and my in-laws.  You have no idea how the things you do affect the lives of others and their situations.  Prayers get answers through you.

This week I found a non profit that actually use corporate Jets to help get cancer patients to their appointments.  I have reached out to them and they think that I would be a pretty good fit.  We are looking into it and going to see if that would help at all.  The nice thing is that they would take my wife too.  That is really the only thing that is costing us much.

Just found at as well that we are still 3 weeks from getting our first reimbursement from USC.  That will be nice to finally have that money coming back.  Started this trial the beginning of September and it is now just coming back.  Have probably taken 7 trips out to LA in the past month and a half.  Crazy how fast it goes.

#cancersucks #fightlikehell