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
Saturday, December 1, 2018
Thursday, November 29, 2018
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
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
Tuesday, November 13, 2018
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
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
Thursday, October 25, 2018
Cancer Really Does Suck
Last week was a pretty rough week. We had a friend and a coach who battled cancer for 12 years pass away. For the last 5 years we have spent our entire summer with him and his family at the baseball fields. He was only 43 years old and leaves behind a wife and 3 children. This has hit home for me for obvious reasons. Cancer is a very scary diesease but the research they are doing is helping and they are starting to figure it out. Our support and love goes to the Kap family. #fightlikekap
The night of his funeral Jen and I headed to LA for another treatment. The kids headed to Fish Laje with their grandma and grandpa Jensen. We have been fortunate to have family and friends be able to help us out sooooo much. We are very appreciative of all the support that has been provided to us. The treatment went well. I was given a combo treatment of both Ipi and Imo-2125. The last couple of times I have felt pretty crappy with some flu like symptoms. This time there were none. My liver continues to be inflamed, which the doctor thinks is a good thing. I think the assumption is that an inflamed liver is fighting an infection or disease. We were actually done at the hospital around 2:00 in the afternoon which gave us some time to head to the ocean. We spent our time taking a walk along the pier and beach.
When we got home on Saturday the kids were still at Fish Lake so Jen and I went to the USC vs Utah football game. People have asked me where my alegience lies since I am getting my treatments at USC. let's just say I wore my red Ute gear to my doctor's appointment on Friday. Kids came home and we're so excited with their trip to fish lake. They couldn't stop talking about the fish and things they had done down their. Thank you for all the support, we love you all and appreciate the things you do for us. We don't deserve it.
#cancersucks #fightlikehell
The night of his funeral Jen and I headed to LA for another treatment. The kids headed to Fish Laje with their grandma and grandpa Jensen. We have been fortunate to have family and friends be able to help us out sooooo much. We are very appreciative of all the support that has been provided to us. The treatment went well. I was given a combo treatment of both Ipi and Imo-2125. The last couple of times I have felt pretty crappy with some flu like symptoms. This time there were none. My liver continues to be inflamed, which the doctor thinks is a good thing. I think the assumption is that an inflamed liver is fighting an infection or disease. We were actually done at the hospital around 2:00 in the afternoon which gave us some time to head to the ocean. We spent our time taking a walk along the pier and beach.
When we got home on Saturday the kids were still at Fish Lake so Jen and I went to the USC vs Utah football game. People have asked me where my alegience lies since I am getting my treatments at USC. let's just say I wore my red Ute gear to my doctor's appointment on Friday. Kids came home and we're so excited with their trip to fish lake. They couldn't stop talking about the fish and things they had done down their. Thank you for all the support, we love you all and appreciate the things you do for us. We don't deserve it.
#cancersucks #fightlikehell
Thursday, October 11, 2018
1 month of Treatments
Well it has been a while since I posted anything. We have been to LA a total of 4 times now and 3 of those times I have received treatment. Jen has been with me Everytime except once. My dad came with me the last time. 3 times I have been injected with the IMO drug directly into the liver and once I have had an infusion of Ipi. The injection I have been awake for. They give me some local anesthesia (litocaine) and most of the time I don't feel the injection. This last time though they either didn't give me enough litocaine or I am becoming immune to it because it didn't feel very good.
The side effects in the beginning were minimal but have seemed to be getting worse the further along we go. This most recent visit I had some serious chills and then muscle pains and headache. Think flu like chills and pains. I have also had some rashes that are pretty itchy. My next visit is next week where I will get both the IMO and Ipi. Then I go back about every 3 weeks and get both drugs everytime for a while. The drugs kind of make me a little awnry/testy so be nice to me. 😉
The doctor told us that the lesions are not growing right now but they are not shrinking either. He says it usually take about 2 1/2 months to see any progression. We are about a month into the treatment so we are about half way there. We are hopeful and optimistic still that this will work. I still feel pretty good and am able to do just about anything I want. I do have some pains mostly related to the injection site but those are more than bearable.
My dad and I were able to attend our first playoff baseball game while in LA last week. It was a lot of fun but the atmosphere is nowhere near a Jazz playoff atmosphere. We have eaten at some good places, sushi, Mexican and noodles. Of you know of a place we should try let us know. Thanks for the continued prayers and support. We appreciate it very much.
#cancersucks #fightlikehell
The side effects in the beginning were minimal but have seemed to be getting worse the further along we go. This most recent visit I had some serious chills and then muscle pains and headache. Think flu like chills and pains. I have also had some rashes that are pretty itchy. My next visit is next week where I will get both the IMO and Ipi. Then I go back about every 3 weeks and get both drugs everytime for a while. The drugs kind of make me a little awnry/testy so be nice to me. 😉
The doctor told us that the lesions are not growing right now but they are not shrinking either. He says it usually take about 2 1/2 months to see any progression. We are about a month into the treatment so we are about half way there. We are hopeful and optimistic still that this will work. I still feel pretty good and am able to do just about anything I want. I do have some pains mostly related to the injection site but those are more than bearable.
My dad and I were able to attend our first playoff baseball game while in LA last week. It was a lot of fun but the atmosphere is nowhere near a Jazz playoff atmosphere. We have eaten at some good places, sushi, Mexican and noodles. Of you know of a place we should try let us know. Thanks for the continued prayers and support. We appreciate it very much.
#cancersucks #fightlikehell
Sunday, September 23, 2018
USC Trip
We had our first treatment at USC. It went very well and no issues from side effects. I was told I need to drink more water than I have been. Some of my blood work came back and didn't look so hot. They think that most of it was due to dehydration so I have been working on drinking a lot more water this last little while. The treatment was pretty simple for me. They wanted to partially sedate me to do this but I had eaten prior to and so they could not (the trial coordinator failed to mention this to me). Instead of sedation they did a lot of localized anesthesia to numb the skin and the area around the liver. This was probably the most painful but not really excruciating. Once it was numb I really didn't feel anything. They put a needle that seemed like it was 12" long into my abdomen and then into the liver where the lesion is. With that they infused a drug called IMO-2125 (about 4 ml) and then we were done. For the next 4 hours I had a bunch of blood tests and such so they could see how my system was responding to the drug.
We head back next week to do that same thing again plus an infusion of a drug called Ipilimumab. Side effects so far have been minimal, in fact I haven't felt any different after that first treatment. I just have to pee a lot more than I was previously (due to me being more focused on drinking lots of water). In fact after the treatment my wife and I went to a Dodgers game. We were staying close enough that we were able to walk to the stadium. It was a fun game and the Dodgers won.
Scheduling the travel is becoming harder and harder. Maybe it is not harder but rather tedious. Having to figure out schedules and times and everything is difficult. We are optimistic that all this effort will be worth it though. Now that we have all the dates of our appointments we will be able to schedule everything out and not have to do it all at once.
The financial side is a little stressful. Not that we can't do it but mostly because we have been told we would be reimbursed for many of the costs by the drug company but haven't seen any firm details of that yet. We are going into this trusting that the company will come through so we don't get stuck with the costs of all this. I guess that will all work itself out however it will.
Thanks for all the prayers and support. One thing that has been on my mind a lot is a scripture in the Book of Mormon. 2 Nephi 2:25 Adam fell that men might be; and men are, that they might have joy. If you see me around and I tell you I am doing good its because I take this scripture to heart. I feel that whatever our trials, we are here to be happy. I encourage anyone to try this and have an attitude of happiness. It will do wonders for you.
#cancersucks #fightlikehell
We head back next week to do that same thing again plus an infusion of a drug called Ipilimumab. Side effects so far have been minimal, in fact I haven't felt any different after that first treatment. I just have to pee a lot more than I was previously (due to me being more focused on drinking lots of water). In fact after the treatment my wife and I went to a Dodgers game. We were staying close enough that we were able to walk to the stadium. It was a fun game and the Dodgers won.
Scheduling the travel is becoming harder and harder. Maybe it is not harder but rather tedious. Having to figure out schedules and times and everything is difficult. We are optimistic that all this effort will be worth it though. Now that we have all the dates of our appointments we will be able to schedule everything out and not have to do it all at once.
The financial side is a little stressful. Not that we can't do it but mostly because we have been told we would be reimbursed for many of the costs by the drug company but haven't seen any firm details of that yet. We are going into this trusting that the company will come through so we don't get stuck with the costs of all this. I guess that will all work itself out however it will.
Thanks for all the prayers and support. One thing that has been on my mind a lot is a scripture in the Book of Mormon. 2 Nephi 2:25 Adam fell that men might be; and men are, that they might have joy. If you see me around and I tell you I am doing good its because I take this scripture to heart. I feel that whatever our trials, we are here to be happy. I encourage anyone to try this and have an attitude of happiness. It will do wonders for you.
#cancersucks #fightlikehell
Monday, September 17, 2018
USC Follow-up
Looks like I am going to be able to get the treatment I was hoping for at USC. We will be down there very soon and start the treatments immediately. This means frequent travel to LA over the next several months but happy to finally be able to get some sort of treatment. Thanks for all the prayers and support.
#cancersucks #fightlikehell
#cancersucks #fightlikehell
Wednesday, September 12, 2018
Our Trip To Los Angeles
Where to begin. We left on Tuesday morning and we were scheduled to fly into Long Beach. Our flight was delayed two and a half hours. This would have left very little time to get to the doctors appointment at USC with Dr. In that afternoon. We were fortunate because there was a flight going into LAX that left about 20 minutes after we were originally scheduled to leave and were able to get on that flight. Our rental car was prepaid out of Long Beach so when we landed we jumped on an Uber (first experience) to get ourselves to Long Beach. Once we got there we grabbed some lunch at the Brewery in the hotel then off to the appointment.
The USC Norris Cancer Center is not as nice as Huntsman is. It has more of a hospital feel than Huntsman. Dr. In was great. He explained some things to us that we hadn't heard before and helped us to understand the different drugs and how they interact with my immune system and their purpose.
He felt and explained that the cancer started somewhere on my skin. The reason it is no longer there is my immune system most likely recognized it and took care of it. Which says that my immune system has the capability of beating this disease. He also said that it is very slow growing because of my immune system. Basically he feels that my immune system is doing 80% of the work and that we need to find something to help give it that extra boost so that it can finish off the remaining 20% of the disease.
Dr. In explained a whole bunch about how our immune systems work. Talking about T-Cells, helper T-cells and killer T-cells. Immunotherapy is designed to bolster these cells to help identify and kill the cancer. I have been on one type of therapy which is a PD-1 type drug which strengthens one of these cells. There is another type, that I have not been on, which is a CLT4A drug which helps a different cell and then there is this IMO-2125 which works in combiniation with the CLT4A to bolster multiple cells. The key with the IMO drug is that it gets injected directly into the existing tumor/disease. He said that seems to be key in this drug working as well as it has been.
We had never had this level of explanation given to us. It was great for us to better understand some of these things. He was also extremely optimistic about being able to beat this disease. He felt, like I said earlier, that my immune system is currently doing a decent job but needs a little help to finish it off. We are optimistic that this trial is what needs to be done to finish it off. If not, there are still many other things to try. There is a dual therapy of Opdivo and Yervoy as well as TIL Therapy (read more about it here). When it comes to melanoma Chemo really is not an option because it doesn't work. There are also many other trials available to try.
After my doctors visit Jen and I headed to the LA temple where we did a bunch of sealings. This was a great experience for my wife and I. I always feel a comfort being in the temple and continue to get reassuring feelings that this is just a trial that we will over come and grow from. I am going to be here for a very long time and am going to beat this disease. Thanks for all your support!!! Life is good, I feel great and we are happy and hopeful. Keep us in your thoughts and prayers but when we talk in person be happy and optimistic with us. Have the faith and help to reassure us that we can beat this together.
#cancersucks #fightlikehell
The USC Norris Cancer Center is not as nice as Huntsman is. It has more of a hospital feel than Huntsman. Dr. In was great. He explained some things to us that we hadn't heard before and helped us to understand the different drugs and how they interact with my immune system and their purpose.
He felt and explained that the cancer started somewhere on my skin. The reason it is no longer there is my immune system most likely recognized it and took care of it. Which says that my immune system has the capability of beating this disease. He also said that it is very slow growing because of my immune system. Basically he feels that my immune system is doing 80% of the work and that we need to find something to help give it that extra boost so that it can finish off the remaining 20% of the disease.
Dr. In explained a whole bunch about how our immune systems work. Talking about T-Cells, helper T-cells and killer T-cells. Immunotherapy is designed to bolster these cells to help identify and kill the cancer. I have been on one type of therapy which is a PD-1 type drug which strengthens one of these cells. There is another type, that I have not been on, which is a CLT4A drug which helps a different cell and then there is this IMO-2125 which works in combiniation with the CLT4A to bolster multiple cells. The key with the IMO drug is that it gets injected directly into the existing tumor/disease. He said that seems to be key in this drug working as well as it has been.
We had never had this level of explanation given to us. It was great for us to better understand some of these things. He was also extremely optimistic about being able to beat this disease. He felt, like I said earlier, that my immune system is currently doing a decent job but needs a little help to finish it off. We are optimistic that this trial is what needs to be done to finish it off. If not, there are still many other things to try. There is a dual therapy of Opdivo and Yervoy as well as TIL Therapy (read more about it here). When it comes to melanoma Chemo really is not an option because it doesn't work. There are also many other trials available to try.
After my doctors visit Jen and I headed to the LA temple where we did a bunch of sealings. This was a great experience for my wife and I. I always feel a comfort being in the temple and continue to get reassuring feelings that this is just a trial that we will over come and grow from. I am going to be here for a very long time and am going to beat this disease. Thanks for all your support!!! Life is good, I feel great and we are happy and hopeful. Keep us in your thoughts and prayers but when we talk in person be happy and optimistic with us. Have the faith and help to reassure us that we can beat this together.
#cancersucks #fightlikehell
Boston's Prayer
We scheduled our appointment to go to LA. The kids were pretty upset because they figured we were going to Disneyland. Boston was the most upset about it. When we explained we were not going there for Disneyland but for a doctors appointment Boston was much more accepting of it as were the others. The night before we left he said our family prayer and blessed that we would have a safe trip but couldn't remember that we were going to LA. So he prayed that we would be safe on our trip to Disneyland (that's what he could remember). It was a great moment that will be remembered for a long time.
#cancersucks #fightlikehell
#cancersucks #fightlikehell
Faith in All Places
Many of you have read and know I love pickleball, I play just about everyday. Pickleball isn't only about the competition but there is a social aspect. While playing last week, one of my buddies who is a pastor at the Lifepoint Church came up at the end of our playing and asked if he could pray with me. So there we are sweaty and tired praying together. He had heard what I was going through and wanted to help in some way. It is great to have these experiences with friends because it helps us to know people care. I appreciate this much more than people being sorry for the situation we are working through. I am a happy positive person and when someone comes up with that solemn look on their face it gets a little frustrating and difficult to talk to that person. If you see me around be happy and not sorry, things are good and getting better.
#cancersucks #fightlikehell
#cancersucks #fightlikehell
Wednesday, September 5, 2018
USC Next Week
Just got a call from the Dr. At USC. I am going out there for an initial screening visit next week but it looks like I qualifY for it. I think that is good news.
Labor Day Weekend/Hope Box Theater
We had a great weekend. I appreciate all who participated and prayed on Sunday. Those prayers were felt and are needed for me and my family. We spent the weekend up at East Canyon Resort (came home on Sunday for our services). Combination of pickleball, swimming, dodge ball, rubber duck races, water balloon tosses etc. The kids had a blast and really enjoyed the time up there.
We are still waiting to hear back from USC. They have received all the images and are going through them now. Hopefully we will know what is happening in the next day or so with that clinical trial.
I had an old friend come over who is on the board of directors for the Hope Box Theater. This is a local nonprofit organization whose mission is to bring hope to families battling cancer through performing arts. The theater chooses one person and their family that is battling cancer and focuses all their good energy and vibes towards that family for the show. On closing night they invite that person and family to join them and put them on their wall of hope. He suggested we put my name into the hat for their upcoming show The Scarlet Pimpernel. Obviously I struggle with this because I am not looking for attention, recognition, gifts, money or whatever you want to call it. I don't like to be in the spotlight either. But I think part of the reason I am going through this trial is to learn how to serve people better through allowing others to serve my family. I have learned and will continue to learn a great deal about service through this experience. For me allowing people to do things for us is a struggle because I pride myself in being able to take care of things on my own. I guess it is a humility thing that I struggle to grasp and allow to happen. As I try to allow others to help me and my family I feel like I can learn how to better serve others as well, so that in the future I might be able to affect someones life for the good. Whether I get selected or not doesn't matter to me, it is the great thought of a good friend to think of me. That means the world to our family. Also, if you haven't seen them I think you should check them out. Obviously they are working for a great cause and their shows are fantastic. You can watch what this entails here. Many people ask what they can do to help. In my mind supporting nonprofit organizations like Hope Box is supporting the things we are fighting. There are many of them out there just pick one and do what you like.
We are still waiting to hear back from USC. They have received all the images and are going through them now. Hopefully we will know what is happening in the next day or so with that clinical trial.
I had an old friend come over who is on the board of directors for the Hope Box Theater. This is a local nonprofit organization whose mission is to bring hope to families battling cancer through performing arts. The theater chooses one person and their family that is battling cancer and focuses all their good energy and vibes towards that family for the show. On closing night they invite that person and family to join them and put them on their wall of hope. He suggested we put my name into the hat for their upcoming show The Scarlet Pimpernel. Obviously I struggle with this because I am not looking for attention, recognition, gifts, money or whatever you want to call it. I don't like to be in the spotlight either. But I think part of the reason I am going through this trial is to learn how to serve people better through allowing others to serve my family. I have learned and will continue to learn a great deal about service through this experience. For me allowing people to do things for us is a struggle because I pride myself in being able to take care of things on my own. I guess it is a humility thing that I struggle to grasp and allow to happen. As I try to allow others to help me and my family I feel like I can learn how to better serve others as well, so that in the future I might be able to affect someones life for the good. Whether I get selected or not doesn't matter to me, it is the great thought of a good friend to think of me. That means the world to our family. Also, if you haven't seen them I think you should check them out. Obviously they are working for a great cause and their shows are fantastic. You can watch what this entails here. Many people ask what they can do to help. In my mind supporting nonprofit organizations like Hope Box is supporting the things we are fighting. There are many of them out there just pick one and do what you like.
Friday, August 31, 2018
Medical Data
Not much really to say today. I am working on sending all of my paperwork over to USC. More than 150 pages of notes and 11 CD's of images since the end of October. This seems to be a huge amount of medical data. If I qualify for this trial, USC will become my primary medical provider but Huntsman will still monitor in the background.
#cancersucks #fightlikehell
#cancersucks #fightlikehell
Thursday, August 30, 2018
Great Way to Start the Day
I started today by playing my favorite past time, pickleball. We played for several hours and it was great competition. I am a pretty competitive person and this gets my juices flowing. Basketball did the same for me but after playing I would ache for a week. I am coming up on 40 years old so apparently my body doesn't want to recover the same way it used to. I am still pretty sexy which offsets everything else. 🌝
I also got, what I consider, some great news from the doctor (good news hasn't really come from doctors too often recently). We had an appointment scheduled for 4:00 this afternoon to review the results from the CT scan. The doctor called when I was done playing pickleball and said that there was not any growth in the lesions from the last scan on July 12th. They were still there but not growing too fast anyway. We talked about next steps and discussed what we should do. I talked to him about the study at USC and the possibilities of that study and we both agreed that if I could get on that one it would be in my best interest. I have reached out to the team at USC to start that conversation and figure out the next steps.
College football starts tonight and it should be a fun season. I'll be cheering loud for my team as I hope you do the same for yours. This should be a great year! Thanks again for all the support, we appreciate it and know that it strengthens me, my wife and kids daily. Glad we are not on this journey alone.
#cancersucks #fightlikehell
I also got, what I consider, some great news from the doctor (good news hasn't really come from doctors too often recently). We had an appointment scheduled for 4:00 this afternoon to review the results from the CT scan. The doctor called when I was done playing pickleball and said that there was not any growth in the lesions from the last scan on July 12th. They were still there but not growing too fast anyway. We talked about next steps and discussed what we should do. I talked to him about the study at USC and the possibilities of that study and we both agreed that if I could get on that one it would be in my best interest. I have reached out to the team at USC to start that conversation and figure out the next steps.
College football starts tonight and it should be a fun season. I'll be cheering loud for my team as I hope you do the same for yours. This should be a great year! Thanks again for all the support, we appreciate it and know that it strengthens me, my wife and kids daily. Glad we are not on this journey alone.
#cancersucks #fightlikehell
Wednesday, August 29, 2018
Miracles Happen Daily
Most of you know I am a religious person. I believe in Christ and his atonement. I know he performs miracles everyday if we open our eyes and see them. I think it is a miracle that I am currently not feeling any effects from the disease that I am fighting. In my faith we believe in the power of prayer and fasting. Through our sacrifice Christ performs miracles. This is why I feel fasting is so beneficial for us.
I live in an area where we have great neighbors and members of our congregation. The leadership of our congregation has been kind enough to request those who are willing and able to include a couple of members from Kaysville in their individual fasts on Sunday. I don't usually like asking people to do things for me but so many of you have asked how you can help. To me participating in this fast is one of the best ways to help. Whether we believe the same or not, by asking for help from God he will bless us.
I really appreciate all the love and support we have been getting. Writing this blog has made it much easier for me emotionally. We got this.
#cancersucks #fightlikehell
I live in an area where we have great neighbors and members of our congregation. The leadership of our congregation has been kind enough to request those who are willing and able to include a couple of members from Kaysville in their individual fasts on Sunday. I don't usually like asking people to do things for me but so many of you have asked how you can help. To me participating in this fast is one of the best ways to help. Whether we believe the same or not, by asking for help from God he will bless us.
I really appreciate all the love and support we have been getting. Writing this blog has made it much easier for me emotionally. We got this.
#cancersucks #fightlikehell
Tuesday, August 28, 2018
USC Phone Call
I just had a nice conversation with Dr. In from the Norris Comprehensive Cancer Center at USC. We discussed my current situation and some possible treatments. We talked about the IMO-2125 in combination with the Ipi.
This treatment intrigues me because it is for patients whose disease does not respond to a PD-1 drug. I took Pembro, which is a PD-1 drug, for 6 months and the disease did not respond to it. This clinical trial is in Phase 3 out of 4 prior to FDA approval which means it is a little further along than others. It has also been granted the Fast-Track designation by the USDA which means that this drug has demonstrated the potential to address an unmet medical need. The results of this drug showed that 6 out of 9 patients experienced disease control of greater than 12 weeks. If you are interested, you can read the phase 3 press release here.
The downside to this treatment is that it would be at USC. A 12 hour drive or a 2 hour plane ride. I was mostly worried about the cost but Dr. In assured me that there were resources available to make it happen. We are meeting with Dr. Voorhies at Huntsman on Thursday afternoon and will be discussing this and other options.
This treatment intrigues me because it is for patients whose disease does not respond to a PD-1 drug. I took Pembro, which is a PD-1 drug, for 6 months and the disease did not respond to it. This clinical trial is in Phase 3 out of 4 prior to FDA approval which means it is a little further along than others. It has also been granted the Fast-Track designation by the USDA which means that this drug has demonstrated the potential to address an unmet medical need. The results of this drug showed that 6 out of 9 patients experienced disease control of greater than 12 weeks. If you are interested, you can read the phase 3 press release here.
The downside to this treatment is that it would be at USC. A 12 hour drive or a 2 hour plane ride. I was mostly worried about the cost but Dr. In assured me that there were resources available to make it happen. We are meeting with Dr. Voorhies at Huntsman on Thursday afternoon and will be discussing this and other options.
CT Scan and Q&A
Just had my CT Scan this morning. The contrast they make you drink is not very tasty. The secretaries that give it to you think differently and call it a berry smoothie flavor. I probably won't get results from this scan until my doctors visit on Thursday.
I just want to say thank you to everyone who has reached out. It is great to know we have many people pulling for us and praying for us. The prayers are being felt and are appreciated!
If you have questions you would like me to answer, post them in the comments section. I would love to answer them for you.
Questions people are always asking:
Q1. How do you feel?
A1. I actually feel normal. If the doctors wouldn't have told me I had a disease, I never would have known. In fact, I played in a pickleball tournament on Saturday (this has become my new hobby) and I golfed on Monday, living as normal life as I can.
Q2. Are you working?
A2. Yep, I work every day (if that is what you call it). I am fortunate to have an employer and job that allows me to sneak away without any problems.
Q3. How are you doing financially?
A3. We are doing very well. The financial impact has been minimal to this point because of our insurance and flexibility of employer.
Q4. What are the next steps in your treatment?
A4. That is what we are trying to figure out. There are several possibilities which fall into different categories.
Current FDA approved treatments:
Ipilimumab
Dual immunotherapy called Nivo + Ipi (Nivolumab + Ipilimumab).
Chemotherapy
The doctor does not want to use these yet. The toxicity levels could cause some other problems. Since I am currently healthy we are not ready to go to this extreme yet.
Clinical trials
I am very open to this option for several reasons. The advances in Melanoma over the last 5 years have been astronomical. The current trials are ones that have built on the success of previously FDA approved drugs that are helping people beat this disease. That means these are the latest and greatest of something they are starting to figure out.
IMO-2125 in combination with Ipi Clinical Trial
GCT1021-01 targeted chemotherapy Clinical Trial
OX40/4-1BB Clinical Trial
I just want to say thank you to everyone who has reached out. It is great to know we have many people pulling for us and praying for us. The prayers are being felt and are appreciated!
If you have questions you would like me to answer, post them in the comments section. I would love to answer them for you.
Questions people are always asking:
Q1. How do you feel?
A1. I actually feel normal. If the doctors wouldn't have told me I had a disease, I never would have known. In fact, I played in a pickleball tournament on Saturday (this has become my new hobby) and I golfed on Monday, living as normal life as I can.
Q2. Are you working?
A2. Yep, I work every day (if that is what you call it). I am fortunate to have an employer and job that allows me to sneak away without any problems.
Q3. How are you doing financially?
A3. We are doing very well. The financial impact has been minimal to this point because of our insurance and flexibility of employer.
Q4. What are the next steps in your treatment?
A4. That is what we are trying to figure out. There are several possibilities which fall into different categories.
Current FDA approved treatments:
Ipilimumab
Dual immunotherapy called Nivo + Ipi (Nivolumab + Ipilimumab).
Chemotherapy
The doctor does not want to use these yet. The toxicity levels could cause some other problems. Since I am currently healthy we are not ready to go to this extreme yet.
Clinical trials
I am very open to this option for several reasons. The advances in Melanoma over the last 5 years have been astronomical. The current trials are ones that have built on the success of previously FDA approved drugs that are helping people beat this disease. That means these are the latest and greatest of something they are starting to figure out.
IMO-2125 in combination with Ipi Clinical Trial
GCT1021-01 targeted chemotherapy Clinical Trial
OX40/4-1BB Clinical Trial
Thursday, August 23, 2018
Update
We have heard from the doctor and we are in a tough situation. The good news is that there is not enough disease to really biopsy and get tissue samples. The bad news is that the majority of clinical trials require tissue samples to qualify. There are a couple of options:
1. Wait to see if the disease continues to get worse or until we can get a tissue sample.
2. Start a regimen of dual immunotherapy which has a very high toxicity rate and could effect other parts of the body and make me feel crappy.
3. Start chemo which doesn't really help treat melanoma that well.
We are going to do another CT scan next week and see if the lesions have grown to the point we might be able to get some tissue from them. If they haven't (which is a good thing) we will have to make a decision then.
While I am typing this, I got a phone call from another clinical trial coordinator that is working with a targeted chemo drug called HuMax-AXL-ADC. This trial does not require a fresh biopsy so I might be able to qualify for this. They have tried it on 15 patients with varying responses. For more info you can follow this link. https://clinicaltrials.gov/ct2/show/NCT02988817
I will keep you updated on whats next, CT scan on August 28th and visit with the doctor on August 30th.
#cancersucks #fightlikehell
1. Wait to see if the disease continues to get worse or until we can get a tissue sample.
2. Start a regimen of dual immunotherapy which has a very high toxicity rate and could effect other parts of the body and make me feel crappy.
3. Start chemo which doesn't really help treat melanoma that well.
We are going to do another CT scan next week and see if the lesions have grown to the point we might be able to get some tissue from them. If they haven't (which is a good thing) we will have to make a decision then.
While I am typing this, I got a phone call from another clinical trial coordinator that is working with a targeted chemo drug called HuMax-AXL-ADC. This trial does not require a fresh biopsy so I might be able to qualify for this. They have tried it on 15 patients with varying responses. For more info you can follow this link. https://clinicaltrials.gov/ct2/show/NCT02988817
I will keep you updated on whats next, CT scan on August 28th and visit with the doctor on August 30th.
#cancersucks #fightlikehell
Monday, August 20, 2018
Cancer Diagnosis
Well, I kind of want people to know what my family is dealing with. Part of me doesn't want people to know so that we don't get treated differently. Our kids know the struggles I am dealing with but we don't currently talk much about it with them because I am able to function as normal and hope to continue that for a very long time. When people find out they are always asking me why I didn't say something sooner or why didn't you tell more people. Truth is, it isn't fun to talk about. It is terrifying to discuss and the unknown nature of what we are dealing with. People want answers but what many don't realize is we want those same answers. They are not currently available and as we work to find the answers we will try to keep you posted. I felt maybe this is a way to inform people of what is going on without having to personally tell them cause I will probably cry and I don't like to cry.
So, what are we dealing with? I have been diagnosed with stage 4 metastatic melanoma. The history behind the diagnosis is this. In October of 2017 I had some abdominal pains (I blamed those pains on the food from Las Vegas) and so we went to the Davis Hospital where they did a CT scan. In that scan they found a large tumor on my adrenal gland. The following week we met with Dr. O'Neil at the Huntsman Cancer Institute. He gave us hope that this might not be anything. We agreed to have this tumor removed. In November I went in for surgery to have it taken out. During the surgery they found out the tumor had attached to my kidney and a piece of my pancreas. They had to take out the kidney but were able to salvage the pancreas. The recovery was miserable from that surgery. A couple of weeks later we still didn't have answers on what the tumor held. We finally found out in the middle of December that it was melanoma that had metastasized to the adrenal gland. We took this as promising news because of all the medical advances around melanoma in the last 5 years. The other was it could have been adrenal carcenoma which has a survival rate of 0% past 5 years. Most of the time people say your melanoma was internal? I thought it was skin cancer? We have been told that it originated on the skin but have never seen anything on the skin that would prove this.
When we found this out we were referred to our oncologist Dr. Voorhies. When we met with him he told us I would be put on an immunotherapy called Pembro (Keytruda) and be monitored. Immunotherapy is administered every 3 weeks through an infusion in the arm that takes about 30 minutes. For 6 months there were no issues and no side effects from the drug. The last visit with him I had a CT scan where they found lesions on my liver. Obviously for cancer patients this is concerning. We have currently stopped the immunotherapy and are trying to find other options. Things like clinical trials, targeted therapies and possibly chemo. I have reached out to the Melanoma Research Foundation and they are helping us through the myriad of clinical trials. The great thing about Melanoma is there are literally hundreds of clinical trials that are available. Trying to find the right one is difficult though.
We have a lot of faith and hope that everything is going to work out. People ask what they can do to help, prayers are always appreciated and well wishes would be great too. I am grateful for those things and feel the blessings from them everyday. It would also be great if you can keep an ear out for things you hear about melanoma. New treatments or trials that might benefit me and my family.
Currently the insurance has covered the majority of the costs so we are doing fine financially (no needs or worries there).
If you want to reach out, Facebook messenger is a great way to get a hold of me (unless you have my cell number that is always the best option). I don't get on the actual Facebook site much anymore.
Thanks for your thoughts and prayers,
The Spilker Family
#cancersucks #fightlikehell
So, what are we dealing with? I have been diagnosed with stage 4 metastatic melanoma. The history behind the diagnosis is this. In October of 2017 I had some abdominal pains (I blamed those pains on the food from Las Vegas) and so we went to the Davis Hospital where they did a CT scan. In that scan they found a large tumor on my adrenal gland. The following week we met with Dr. O'Neil at the Huntsman Cancer Institute. He gave us hope that this might not be anything. We agreed to have this tumor removed. In November I went in for surgery to have it taken out. During the surgery they found out the tumor had attached to my kidney and a piece of my pancreas. They had to take out the kidney but were able to salvage the pancreas. The recovery was miserable from that surgery. A couple of weeks later we still didn't have answers on what the tumor held. We finally found out in the middle of December that it was melanoma that had metastasized to the adrenal gland. We took this as promising news because of all the medical advances around melanoma in the last 5 years. The other was it could have been adrenal carcenoma which has a survival rate of 0% past 5 years. Most of the time people say your melanoma was internal? I thought it was skin cancer? We have been told that it originated on the skin but have never seen anything on the skin that would prove this.
When we found this out we were referred to our oncologist Dr. Voorhies. When we met with him he told us I would be put on an immunotherapy called Pembro (Keytruda) and be monitored. Immunotherapy is administered every 3 weeks through an infusion in the arm that takes about 30 minutes. For 6 months there were no issues and no side effects from the drug. The last visit with him I had a CT scan where they found lesions on my liver. Obviously for cancer patients this is concerning. We have currently stopped the immunotherapy and are trying to find other options. Things like clinical trials, targeted therapies and possibly chemo. I have reached out to the Melanoma Research Foundation and they are helping us through the myriad of clinical trials. The great thing about Melanoma is there are literally hundreds of clinical trials that are available. Trying to find the right one is difficult though.
We have a lot of faith and hope that everything is going to work out. People ask what they can do to help, prayers are always appreciated and well wishes would be great too. I am grateful for those things and feel the blessings from them everyday. It would also be great if you can keep an ear out for things you hear about melanoma. New treatments or trials that might benefit me and my family.
Currently the insurance has covered the majority of the costs so we are doing fine financially (no needs or worries there).
If you want to reach out, Facebook messenger is a great way to get a hold of me (unless you have my cell number that is always the best option). I don't get on the actual Facebook site much anymore.
Thanks for your thoughts and prayers,
The Spilker Family
#cancersucks #fightlikehell
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