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
Friday, August 31, 2018
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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