Sorry to be such a Debbie downer but man the last couple of months have been rough. Not just for me but for people I know. I had a longtime friend diagnosed with Parkinson’s disease at 40. Had another longtime friend whose wife passed at 37. I felt like garbage through out the holidays. Life can be and will be difficult for everyone at some point. These two have been examples of strength to me during their times of trial. We all have our own way of fighting through this stuff and whatever can give us some joy is what helps the most.
I did my first treatment of the Y90 drug on Tuesday. Y90 is basically radiation that they inject into the tumors. They also try to cut the blood flow off to the tumors as well. I wasn’t expecting the recovery to be as bad as it has been. I haven’t really been able to get out of bed since Wednesday. I haven’t gotten nauseated with any of the other treatments but this time I did. I could barely eat anything. The doctor gave me some anti nausea medicine I really didn’t take because I hadn’t had a problem until now. Going forward I will try and stay in top of this. I am feeling a little better today. I have been able to eat a cup of noodles and a small sandwich. I don’t have a ton of energy but will get out of the house tomorrow to try and get it back.
You know I am a positive person and feel that attitude can help with problems you might be experiencing. I still feel that way but it doesn’t mean that it is always easy to stay positive.
#cancersucks
#fightlikehell
Friday, January 17, 2020
Thursday, December 5, 2019
Change of Plans
Well, I just spoke over the phone with one of the doctors, the interventional radiologist to be exact. He and my oncologist have talked over the last couple of days and have decided to try something else before going to the chemo treatments. They are going to do more liver directed therapy similar to what I had done back in March and May. They are going to use different drugs this time though called Y90. You can read more on the procedure here. This is not going to cure the cancer but hopefully shrink them, slow the growth or just provide some short term relief while we wait to try other things. When cancer throws a curve ball, you sit on it and wait patiently before you can hit it out of the park. :)
#cancersucks #fightlikehell
#cancersucks #fightlikehell
Monday, December 2, 2019
Cancer Really Does Suck
Well we got the results from the scans and it wasn’t what we were hoping for. The tumors have grown and it seems like there is more of them. Obviously this is unwelcome news. The doctor thinks the next step is chemo therapy. None of the immunotherapy is working so we are going to try a completely different approach. This is a tough one because it seemed like the tumors were changing but that doesn’t seem to be the case. I am still trying to figure out my thoughts but it kind of seems numb at this point. I am trying to stay positive and I still feel optimistic. There are several types of chemo we can try. The first one is an out patient infusion. The other requires a five day stay in the hospital multiple times. For the next couple of months we are going to try the out patient infusion. If that doesn't do anything then we will move to the inpatient infusion. The side effects are pretty well managed with some steroids except the hair loss. We are going to start with the outpatient infusion. The drugs are called Paraplatin and Taxol. They do different things then the immunotherapy so hopefully that is good. These drugs take about 6 hours to give so every three weeks it will be a very long day in the hospital. I am headed to the Pac-12 championship game this weekend so we are going to wait until next Wednesday to start the first round of Chemo.
With all this being said, I am a fighter and am going to do everything in my power to overcome this. We have overcome many trials before and we can do the same with this one. Thanks for all the support and prayers. We really appreciate them.
#cancersucks #fightlikehell
With all this being said, I am a fighter and am going to do everything in my power to overcome this. We have overcome many trials before and we can do the same with this one. Thanks for all the support and prayers. We really appreciate them.
#cancersucks #fightlikehell
Tuesday, November 19, 2019
Scan Week
So I have some scans on Friday this week. My follow up appointment is on Wednesday next week. I will get an injection and discuss the results of my scans. We don't know what they will tell us yet. Could be good, could be bad. We are optimistic because some of the indicators we have seen. We don't know if they have shrunk but we do know that their definition is not as good as it once was.
I am going to share something that I normally don't but have felt like I needed to. This is not intended to lift me up or put me on a pedestal but rather share an experience that has helped me understand how blessed I really have been through this entire experience. I have several friends who have been going through some struggles recently. I feel their trials have been pretty heavy and wanted to help in any way I could possibly. Sometimes it isn't about physical things we do for people. I learned in my youth that you can pray to have our blessings reallocated if you will. So I prayed that the blessings I had been receiving would be passed on to my friends who were struggling. I really didn't expect to happen what happened next. For the next 3 weeks I felt my blessings go. I was in a great deal of pain from my treatments and didn't recover like I had been previously. After several treatments I still couldn't recover. Physically and mentally I was exhausted and just felt like blah. I really can't describe how I felt but it was so different than what I had been experiencing. There is no doubt in my mind that the blessings people have prayed that I would get were passed on to others (I willingly asked for and hoped this would happen). My hope is that their burden was made somewhat lighter and that they were able to feel some peace during that time.
The biggest thing this really did for me was helped me to realize how truly blessed I am. If I felt the way I did for those 3 weeks for a longer period of time it would be awful and I am not sure how I would function. Fortunately I have felt those blessings come back and am feeling soooo much better now. Most of the pain is gone and the blah feeling has gone away. The power of prayer does work and God works in his ways (and through his children) to help all of our burdens be lightened.
#cancersucks #fightlikehell
I am going to share something that I normally don't but have felt like I needed to. This is not intended to lift me up or put me on a pedestal but rather share an experience that has helped me understand how blessed I really have been through this entire experience. I have several friends who have been going through some struggles recently. I feel their trials have been pretty heavy and wanted to help in any way I could possibly. Sometimes it isn't about physical things we do for people. I learned in my youth that you can pray to have our blessings reallocated if you will. So I prayed that the blessings I had been receiving would be passed on to my friends who were struggling. I really didn't expect to happen what happened next. For the next 3 weeks I felt my blessings go. I was in a great deal of pain from my treatments and didn't recover like I had been previously. After several treatments I still couldn't recover. Physically and mentally I was exhausted and just felt like blah. I really can't describe how I felt but it was so different than what I had been experiencing. There is no doubt in my mind that the blessings people have prayed that I would get were passed on to others (I willingly asked for and hoped this would happen). My hope is that their burden was made somewhat lighter and that they were able to feel some peace during that time.
The biggest thing this really did for me was helped me to realize how truly blessed I am. If I felt the way I did for those 3 weeks for a longer period of time it would be awful and I am not sure how I would function. Fortunately I have felt those blessings come back and am feeling soooo much better now. Most of the pain is gone and the blah feeling has gone away. The power of prayer does work and God works in his ways (and through his children) to help all of our burdens be lightened.
#cancersucks #fightlikehell
Thursday, October 17, 2019
Tumor Definition
I have just started the second round of this treatment. A round is Infusion and then injection the first week, the second week is just an injection and the third week is a break. Yesterday I started the second round. Jen and I were at Huntsman from 7:00 am until about 7:00 pm. They had a fire alarm go off which caused some delays and excitement but most of the time was waiting around for specific blood draws for the trial.
Every time I have an injection they start by measuring the tumor they are injecting with Ultrasound. During the first round they had said something about the tumor they were injecting not being as visible in the Ultrasound. They thought this was due to inflammation in the tumor itself because of the injections and didn't think anything of it. Yesterday when they did the ultrasound they could barely see the tumor they were injecting at all. It hasn't shrunk any but was just very difficult to see. They have typically done the injection into the liver via ultrasound. Yesterday because of how difficult it was to see they decided to do it with ct guidance. It is a much better image and more detailed. When they did this, they were able to look at the 3 different tumors that are in my liver. The comment the doctor made was that prior to this treatment my 4 year old could have picked these tumors out. Now it is impossible for an untrained eye to see them. Even thought they are only injecting the one tumor it seems to be affecting all of the tumors which is what they were hoping for. These tumors have started to become "mushy".
Now we really don't know what this means. We know the tumors are still there but something with them is changing. It has almost been 2 years since this journey began and this truly is the first sign of hope that I feel like I have been given from the doctors and treatments. The excitement you see in the doctors faces and in some of their mannerisms is fun. It's almost like a kid in a candy store some of the excitement I have seen.
I really try not to get too high or too low with any news. I am trying to keep this in perspective, knowing that it might be an anomaly and doesn't mean that this is working. We will just keep praying and hoping that it isn't an anomaly and it is the beginning of a great change.
We really do appreciate all the support, love, prayers, fasting and everything else that has been done for us. You all are truly amazing.
#cancersucks #fightlikehell
Every time I have an injection they start by measuring the tumor they are injecting with Ultrasound. During the first round they had said something about the tumor they were injecting not being as visible in the Ultrasound. They thought this was due to inflammation in the tumor itself because of the injections and didn't think anything of it. Yesterday when they did the ultrasound they could barely see the tumor they were injecting at all. It hasn't shrunk any but was just very difficult to see. They have typically done the injection into the liver via ultrasound. Yesterday because of how difficult it was to see they decided to do it with ct guidance. It is a much better image and more detailed. When they did this, they were able to look at the 3 different tumors that are in my liver. The comment the doctor made was that prior to this treatment my 4 year old could have picked these tumors out. Now it is impossible for an untrained eye to see them. Even thought they are only injecting the one tumor it seems to be affecting all of the tumors which is what they were hoping for. These tumors have started to become "mushy".
Now we really don't know what this means. We know the tumors are still there but something with them is changing. It has almost been 2 years since this journey began and this truly is the first sign of hope that I feel like I have been given from the doctors and treatments. The excitement you see in the doctors faces and in some of their mannerisms is fun. It's almost like a kid in a candy store some of the excitement I have seen.
I really try not to get too high or too low with any news. I am trying to keep this in perspective, knowing that it might be an anomaly and doesn't mean that this is working. We will just keep praying and hoping that it isn't an anomaly and it is the beginning of a great change.
We really do appreciate all the support, love, prayers, fasting and everything else that has been done for us. You all are truly amazing.
#cancersucks #fightlikehell
Friday, September 27, 2019
First Treatment Completed
So I just finished my first treatment with the clinical trial. The treatment seemed to be very similar to the last trial I did. This one was a little more work though because they wanted a biopsy too. Started this treatment with a bunch of blood draws on Tuesday. Then Wednesday morning I went in a have a bunch more blood. Meet with doctor Grossman which started the treatment. After meeting with the Dr. I went and got the infusion of Pembro/Keytruda. This process takes about an hour. When you get there they have to order the drug from the pharmacy so a little bit of it is waiting. They have a nice sitting area with TV’s at all the infusion stations. There is about 32 infusion stations at Huntsman. It always amazes me how busy that place is. The infusion started about 9:00 and were out of there about 10:30. We went up and got checked into the room we were going to stay in then they took me to interventional radiology. Here they pretty much knocked me out. They did a biopsy and injected the clinical drug using aCT for guidance and to make sure they did it in the right place. I was probably only there an hour or so and then back up to my room. The coordination from all the doctors was great. When we did a clinical trial at USC we would wait for hours on end to go from one stage to the next. At Huntsman it was one thing after the other which was great. The reason I stayed over night was so they could drain all my blood and save all my pee too. It seemed like they were drawing blood every couple of hours. I didn’t realize I could spare so much. I felt pretty good until later that night. I got flu like symptoms like the chills, headache and body aches. This was expected for the most part. When we got home on Thursday I was extremely tired and didn’t have much energy. That has been pretty typical of a treatment. I usually sleep a lot in the days that follow a treatment. This morning I woke up feeling pretty good. I will go to work and try to have a normal day but I am sure fatigue will slip in later today.
Below is a timeline of my next steps:
Week 1 Infusion, Injection and biopsy (completed)
Week 2 injection
Week 3 break
Week 4 infusion and injection
Week 5 injection
Week 6 break
Repeat
From my understanding I shouldn’t have to stay in the hospital again. Some days will be longer than others depending on the blood work that needs to be done.
Below is a timeline of my next steps:
Week 1 Infusion, Injection and biopsy (completed)
Week 2 injection
Week 3 break
Week 4 infusion and injection
Week 5 injection
Week 6 break
Repeat
From my understanding I shouldn’t have to stay in the hospital again. Some days will be longer than others depending on the blood work that needs to be done.
Wednesday, September 18, 2019
MK-1454-001
We are now on track to to start the next trial drug on September 25th. I have some scans tomorrow for a baseline of the disease and a biopsy on Tuesday so they can compare it to another later on in the trial. This will probably be a little more intensive treatment then I am used to. On Wednesday the 25th, I will go in first thing in the morning to Huntsman where I will visit with the doctors and they will take some blood. After that then I will go to the interventional radiologist where the Dr. will inject the trial drug MK1454 directly into the tumor in my liver. After that, I will be given a dose of Pembro (this is the drug I was first put on several years ago). This first time I get the pleasure of staying in the hospital overnight for monitoring. Should be in the hospital all day Wednesday and leaving Thursday morning. The injections I get will happen twice out of every 3 weeks, fortunately all of this is done at Huntsman on the hill. I will also get Pembro every 3 weeks. The hope with this trial is that we get a receptor to light up so that my immune system can see the cancer cells. I like the new doctor I have been seeing. Dr. Grossman seems to be much more positive about the treatments and the future prospects. Below are a couple of articles on MK-1454
https://investors.merck.com/news/press-release-details/2018/First-Presentation-of-Early-Data-for-Mercks-Investigational-STING-Agonist-MK-1454-in-Patients-with-Advanced-Solid-Tumors-or-Lymphomas-at-ESMO-2018-Congress/default.aspx
https://lymphomanewstoday.com/2018/11/05/mk-1454-keytruda-combo-shows-promise-interim-phase-1-data-shows/
https://onlinelibrary.wiley.com/doi/full/10.1002/anie.201707816%4010.1002/%28ISSN%291521-3773.merck_350
https://clinicaltrials.gov/ct2/show/NCT03010176
The hunting seasons are upon us and I am sure that this will cause some problems with that. I was supposed to go muzzle loader hunting next week but that will have to be postponed. Easton is hunting ducks this weekend for the youth hunt and then has a couple of deer tags as well. This is a fun time of year. I already have 1 pheasant hunting trip planned for the first week in October, hopefully this doesn't screw that one up as well.
https://investors.merck.com/news/press-release-details/2018/First-Presentation-of-Early-Data-for-Mercks-Investigational-STING-Agonist-MK-1454-in-Patients-with-Advanced-Solid-Tumors-or-Lymphomas-at-ESMO-2018-Congress/default.aspx
https://lymphomanewstoday.com/2018/11/05/mk-1454-keytruda-combo-shows-promise-interim-phase-1-data-shows/
https://onlinelibrary.wiley.com/doi/full/10.1002/anie.201707816%4010.1002/%28ISSN%291521-3773.merck_350
https://clinicaltrials.gov/ct2/show/NCT03010176
The hunting seasons are upon us and I am sure that this will cause some problems with that. I was supposed to go muzzle loader hunting next week but that will have to be postponed. Easton is hunting ducks this weekend for the youth hunt and then has a couple of deer tags as well. This is a fun time of year. I already have 1 pheasant hunting trip planned for the first week in October, hopefully this doesn't screw that one up as well.
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