Been a While

My wife got after me for not updating this sooner.  It has been a slow couple of months with not much happening.  In May I did the TACE treatment.  My follow up was in June I think with an MRI of my chest.  It really didn't show much change and did not sure any new areas of concerns.  Physically I am still doing fine.  Mentally it weighs constantly on my mind.  This past week I had a PET CT scan and an MRI of my brain.  The doctor said that he considered it stable disease.  I am not exactly sure what that means.  I know that the disease is slow growing but it doesn't seem to be spreading too much.  The doctor seems to think that the best thing to do at this point is try to get my immune system to recognize the cancer as a disease.  Once the immune system recognizes this it will kill it.  My form of cancer he said is very bland without any mutations which makes it a little more difficult.  The things we have tried in the past are similar.  Pembro is intended to build up your immune system to fight and try to recognize the cancer.  The trial I went on used a combination of Ipi and IMO-2125 to try and make it seen.  The next thing we are doing is going to try something called Sting.  STING is a signaling molecule that plays an important role in the body’s first line of defense against pathogens, such as bacteria and viruses (innate immune system). When activated, STING triggers the production of inflammatory proteins that can stimulate the immune system leading to the deployment of T cells, which are important in generating an effective immune mediated response to cancer cells.  Merck makes the drug I am going to take called MK-1454.  I will do this in combination with Pembro.  You can read more about this study here.  https://clinicaltrials.gov/ct2/show/NCT03010176?term=mk-1454&rank=1  I am still trying to qualify for this trial but it looks promising.

We have been really busy.  We took a trip to New York and had a great time out there.  We saw the Statue of Liberty, 9/11 museum and memorial, the new One World Tower, Empire State Building, Central Park and more.  The reason we took a trip to New York was because Easton played in a baseball tournament in Cooperstown.  This has been the highlight of sports events so far for me.  Such a cool experience for the boys and all those involved.  Our baseball family surprised us with shirts prior to going into the Baseball Hall of Fame and we wore them the rest of the day.  The hall of fame was spectacular.  The people you grow up hearing about come to life at this place.  It has a way of rejuvenating your love for the game. 

  

The tournament was so much fun to watch.  The boys played great.  They won 4 games and lost 4 games.  They played some of the best competition they have ever seen.  My favorite moment came in one game.  He had struggled at the plate for much of the year.  Not really making great connections but working hard to improve.  The game was tied (don't remember the score), bases were loaded and he had full count on him.  That's when he hit a rocket up the middle and cleared the bases putting the Bandits up 3 runs.  His smile after the game said a lot.  Jen got it all on video and you can see it all happen below.  Don't mind the screaming, it was extremely exciting for all of us. 

We were also lucky enough to spend some time at the church history sites.  We went to the Aaronic Priesthood Restoration site, Whitmer farm, Sacred Grove, Hill Cumorah, Grandin Building (where the Book of Mormon was first published), Martin Harris's farm, The Smith family home, The Hale's (Emma's parents) home, Palmyra Temple and much more.  Below is a picture of us in the sacred grove and a picture of the sacred grove itself.  It was a pretty surreal experience to say the least.  Humbling and testimony building all at the same time.  To walk in the same place as Heavenly Father, Jesus Christ and prophets like Moroni and Joseph Smith was amazing.  Not to mention it puts a reality to the history of the church that has never really been there before. 

Soccer Support

The procedures went well this last time.  No collapsed lung and the recovery from the TACE wasn't as bad as last time.  It causes some serious pain in the liver area.  Last time it lasted almost 2 weeks, this time it was only about a week.  Really won't know if it did anything for a couple of months.  These treatments are not curitive, rather they try to get rid of existing tumors.  I have read that the tumors usually come back within the year.  This will buy some time as we work through changing doctors and  hopefully coming up with a plan that is more centered around curing it rather than not.  Dr. Voorhies, my current oncologist, has taken a job in St. George.  I will now be meeting with Dr. Grossman.  I feel this is a blessing because Dr. Grossman has been dealing with this disease for over 15 years and is well respected in the field.  I am also optimistic that Dr. Grossman has dealt with the TIL (tumor infiltrating lymphocytes).  That way maybe he can help with some of the clinical trial stuff rather than me having to shift through it all.

This past week I was humbled to have my daughters soccer team celebrate my fight.  They all got sorts and wrist bands and wore them all week in support.  I am not a huge fan of attention as done if you know but it is great to know how many people are it there rooting for me.

You know, as I think on the past year and a half and the fight we have been dealing with I can't help but be greatful for the blessing that this hasn't affected our lives more than it has.  There have only been a few weeks where I haven't felt normal for the most part.  I don't know of many cancer patients that are that lucky or blessed.  I know this is the blessing I have been given for this trial and continue to receive. I have had some great blessings from great people, prayers from sooo many and fasting as well.  All of these have played a part in helping me feel and be as normal as I have been.  Thank you to all who have been a part of that.

I have had some pretty sacred experiences that make me feel this isn't my time and maybe at some point I will share those.  They have happened in the temple and at home and are pretty specific to me.  This battle will be won in some form or another.  Just know how thankful I am for your faith and prayers on my behalf.

#cancersucks #fightlikehell

TACE Treatment

Is seems to have been a while since I have given an update.  Life has been hectic with spring sports schedules and other things going on.  Last time I posted I was about to go in for a TACE treatment.  That procedure seemed to go well.  What they did was went in with a catheter to one of my veins that led to the liver.  Once at the liver they followed a being to several of the tumors in one section of my liver.  They injected some medicine into the tumors and then blocked the blood supply to those tumors.  It took about a week or so to recover and was in the hospital overnight.  This coming Wednesday I am having another procedure done.  This time they are going to do something called ablasion.  They are going to do this in my lung.  Basically they are going to burn the tumors that are currently in my lungs.  Kind of like what you would do with a wart.  The side effect is a possible collapsed lung which they have a simple remedy for I guess.  Then on Thursday they are going to do another TACE treatment on the other section of my liver.  I will be up at Huntsman from Wednesday to Friday.  That's a quick update on me.

Madi had her ACL reconstructed a couple of weeks ago.  She is recovering well and has been in good spirits for the most part.  We go back to see her Dr. on Tuesday to discuss the next steps.

The rest are doing great, busy with spring sports activities, mainly soccer and baseball.  Jen is busy taking care of all of us.  Being the strong person in our family that holds us all together and makes us tickets.  We'd be lost without her.  Until next time.

#cancersucks #fightlikehell

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.