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.
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