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
Sunday, September 23, 2018
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.
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