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
Thursday, October 25, 2018
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
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