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.
Saturday, January 19, 2019
Friday, January 11, 2019
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.
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.
Saturday, December 1, 2018
Pac-12 Championship
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
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
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
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