Change of Plans

Well, I just spoke over the phone with one of the doctors, the interventional radiologist to be exact.  He and my oncologist have talked over the last couple of days and have decided to try something else before going to the chemo treatments.  They are going to do more liver directed therapy similar to what I had done back in March and May.  They are going to use different drugs this time though called Y90.  You can read more on the procedure here.  This is not going to cure the cancer but hopefully shrink them, slow the growth or just provide some short term relief while we wait to try other things.  When cancer throws a curve ball, you sit on it and wait patiently before you can hit it out of the park.  :) 

#cancersucks #fightlikehell

Cancer Really Does Suck

Well we got the results from the scans and it wasn’t what we were hoping for.  The tumors have grown and it seems like there is more of them.  Obviously this is unwelcome news.  The doctor thinks the next step is chemo therapy.  None of the immunotherapy is working so we are going to try a completely different approach.  This is a tough one because it seemed like the tumors were changing but that doesn’t seem to be the case.  I am still trying to figure out my thoughts but it kind of seems numb at this point.  I am trying to stay positive and I still feel optimistic.  There are several types of chemo we can try.  The first one is an out patient infusion.  The other requires a five day stay in the hospital multiple times.  For the next couple of months we are going to try the out patient infusion.  If that doesn't do anything then we will move to the inpatient infusion.  The side effects are pretty well managed with some steroids except the hair loss.  We are going to start with the outpatient infusion.  The drugs are called Paraplatin and Taxol.  They do different things then the immunotherapy so hopefully that is good.  These drugs take about 6 hours to give so every three weeks it will be a very long day in the hospital.  I am headed to the Pac-12 championship game this weekend so we are going to wait until next Wednesday to start the first round of Chemo.

With all this being said, I am a fighter and am going to do everything in my power to overcome this.  We have overcome many trials before and we can do the same with this one.  Thanks for all the support and prayers.  We really appreciate them.

#cancersucks #fightlikehell

Scan Week

So I have some scans on Friday this week.  My follow up appointment is on Wednesday next week.  I will get an injection and discuss the results of my scans.  We don't know what they will tell us yet.  Could be good, could be bad.  We are optimistic because some of the indicators we have seen.  We don't know if they have shrunk but we do know that their definition is not as good as it once was. 

I am going to share something that I normally don't but have felt like I needed to.  This is not intended to lift me up or put me on a pedestal but rather share an experience that has helped me understand how blessed I really have been through this entire experience.  I have several friends who have been going through some struggles recently.  I feel their trials have been pretty heavy and wanted to help in any way I could possibly.  Sometimes it isn't about physical things we do for people.  I learned in my youth that you can pray to have our blessings reallocated if you will.  So I prayed that the blessings I had been receiving would be passed on to my friends who were struggling.  I really didn't expect to happen what happened next.  For the next 3 weeks I felt my blessings go.  I was in a great deal of pain from my treatments and didn't recover like I had been previously.  After several treatments I still couldn't recover.  Physically and mentally I was exhausted and just felt like blah.  I really can't describe how I felt but it was so different than what I had been experiencing.  There is no doubt in my mind that the blessings people have prayed that I would get were passed on to others (I willingly asked for and hoped this would happen).  My hope is that their burden was made somewhat lighter and that they were able to feel some peace during that time. 

The biggest thing this really did for me was helped me to realize how truly blessed I am.  If I felt the way I did for those 3 weeks for a longer period of time it would be awful and I am not sure how I would function.  Fortunately I have felt those blessings come back and am feeling soooo much better now.  Most of the pain is gone and the blah feeling has gone away.  The power of prayer does work and God works in his ways (and through his children) to help all of our burdens be lightened. 

#cancersucks #fightlikehell

Tumor Definition

I have just started the second round of this treatment.  A round is Infusion and then injection the first week, the second week is just an injection and the third week is a break.  Yesterday I started the second round.  Jen and I were at Huntsman from 7:00 am until about 7:00 pm.  They had a fire alarm go off which caused some delays and excitement but most of the time was waiting around for specific blood draws for the trial. 

Every time I have an injection they start by measuring the tumor they are injecting with Ultrasound.  During the first round they had said something about the tumor they were injecting not being as visible in the Ultrasound.  They thought this was due to inflammation in the tumor itself because of the injections and didn't think anything of it.  Yesterday when they did the ultrasound they could barely see the tumor they were injecting at all.  It hasn't shrunk any but was just very difficult to see.  They have typically done the injection into the liver via ultrasound.  Yesterday because of how difficult it was to see they decided to do it with ct guidance.  It is a much better image and more detailed.  When they did this, they were able to look at the 3 different tumors that are in my liver.  The comment the doctor made was that prior to this treatment my 4 year old could have picked these tumors out.  Now it is impossible for an untrained eye to see them.  Even thought they are only injecting the one tumor it seems to be affecting all of the tumors which is what they were hoping for.  These tumors have started to become "mushy". 

Now we really don't know what this means.  We know the tumors are still there but something with them is changing.  It has almost been 2 years since this journey began and this truly is the first sign of hope that I feel like I have been given from the doctors and treatments.  The excitement you see in the doctors faces and in some of their mannerisms is fun.  It's almost like a kid in a candy store some of the excitement I have seen. 

I really try not to get too high or too low with any news.  I am trying to keep this in perspective, knowing that it might be an anomaly and doesn't mean that this is working.  We will just keep praying and hoping that it isn't an anomaly and it is the beginning of a great change. 

We really do appreciate all the support, love, prayers, fasting and everything else that has been done for us.  You all are truly amazing. 

#cancersucks #fightlikehell

First Treatment Completed

So I just finished my first treatment with the clinical trial.  The treatment seemed to be very similar to the last trial I did.  This one was a little more work though because they wanted a biopsy too.  Started this treatment with a bunch of blood draws on Tuesday.  Then Wednesday morning I went in a have a bunch more blood.  Meet with doctor Grossman which started the treatment.  After meeting with the Dr. I went and got the infusion of Pembro/Keytruda.  This process takes about an hour.  When you get there they have to order the drug from the pharmacy so a little bit of it is waiting.  They have a nice sitting area with TV’s at all the infusion stations.  There is about 32 infusion stations at Huntsman.  It always amazes me how busy that place is.  The infusion started about 9:00 and were out of there about 10:30.  We went up and got checked into the room we were going to stay in then they took me to interventional radiology.  Here they pretty much knocked me out.  They did a biopsy and injected the clinical drug using aCT for guidance and to make sure they did it in the right place.  I was probably only there an hour or so and then back up to my room.  The coordination from all the doctors was great.  When we did a clinical trial at USC we would wait for hours on end to go from one stage to the next.  At Huntsman it was one thing after the other which was great.  The reason I stayed over night was so they could drain all my blood and save all my pee too.  It seemed like they were drawing blood every couple of hours.  I didn’t realize I could spare so much.  I felt pretty good until later that night.  I got flu like symptoms like the chills, headache and body aches.  This was expected for the most part.  When we got home on Thursday I was extremely tired and didn’t have much energy.  That has been pretty typical of a treatment.  I usually sleep a lot in the days that follow a treatment.  This morning I woke up feeling pretty good.  I will go to work and try to have a normal day but I am sure fatigue will slip in later today.

Below is a timeline of my next steps:

Week 1 Infusion, Injection and biopsy (completed)
Week 2 injection
Week 3 break
Week 4 infusion and injection
Week 5 injection
Week 6 break
Repeat

From my understanding I shouldn’t have to stay in the hospital again.  Some days will be longer than others depending on the blood work that needs to be done.

MK-1454-001

We are now on track to to start the next trial drug on September 25th.  I have some scans tomorrow for a baseline of the disease and a biopsy on Tuesday so they can compare it to another later on in the trial.  This will probably be a little more intensive treatment then I am used to.  On Wednesday the 25th, I will go in first thing in the morning to Huntsman where I will visit with the doctors and they will take some blood.  After that then I will go to the interventional radiologist where the Dr. will inject the trial drug MK1454 directly into the tumor in my liver.  After that, I will be given a dose of Pembro (this is the drug I was first put on several years ago).  This first time I get the pleasure of staying in the hospital overnight for monitoring.  Should be in the hospital all day Wednesday and leaving Thursday morning.  The injections I get will happen twice out of every 3 weeks, fortunately all of this is done at Huntsman on the hill.  I will also get Pembro every 3 weeks.  The hope with this trial is that we get a receptor to light up so that my immune system can see the cancer cells.  I like the new doctor I have been seeing.  Dr. Grossman seems to be much more positive about the treatments and the future prospects.  Below are a couple of articles on MK-1454

https://investors.merck.com/news/press-release-details/2018/First-Presentation-of-Early-Data-for-Mercks-Investigational-STING-Agonist-MK-1454-in-Patients-with-Advanced-Solid-Tumors-or-Lymphomas-at-ESMO-2018-Congress/default.aspx

https://lymphomanewstoday.com/2018/11/05/mk-1454-keytruda-combo-shows-promise-interim-phase-1-data-shows/

https://onlinelibrary.wiley.com/doi/full/10.1002/anie.201707816%4010.1002/%28ISSN%291521-3773.merck_350

https://clinicaltrials.gov/ct2/show/NCT03010176

The hunting seasons are upon us and I am sure that this will cause some problems with that.  I was supposed to go muzzle loader hunting next week but that will have to be postponed.  Easton is hunting ducks this weekend for the youth hunt and then has a couple of deer tags as well.  This is a fun time of year.  I already have 1 pheasant hunting trip planned for the first week in October, hopefully this doesn't screw that one up as well.

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.