On Friday, 2/6, I went in to work to get my laptop fixed and had intended on staying just long enough to get it taken care of and then I was going to be out of there. When I got to work, my badge was disabled so it was back out to pass and ID to get that resolved and then through the portals at Schriever. Of course, I got to the room I work at and, again, my badge didn't work so back up to the badge office to get my access restored and I was finally at my desk.
On the 45 minute drive in, I thought I would just go ahead and start back to work half time because I can sit at a desk and be productive at work as easily as I can sit on the couch and watch TV. I got to my desk and was able to contribute immediately on several items and that solidified my decision. I got my laptop working and finished out my first half day at work.
This week has gone well so far but it is really quite stunning to me to see how much a simple 4 hour day takes out of me. I come home and take a 1-2hr nap when possible but have had appointments almost every day this week after work so that has bitten into my nap time. I also have an Octroscan scheduled for next week but was giving a small amount of tasking I can do from home and will capitalize on that opportunity as well as use some holiday hours.
It is incredibly rewarding to be back at work. I am good at what I do and it feels wonderful to be able to use my talents once again. I know that every day is not going to be rewarding and many are going to be drudgery but the once or twice a day where I can really help others and advance our project are soothing to my soul.
I am still not eating well. I get my 2300 calories per day from TPN and then try to supplement that with another 500+ calories of a full liquid diet. This usually amounts to something like orange juice for breakfast, ensure and a soda for lunch, and tomato soup and sweet tea for dinner. This menu gives me about 650+ calories or so which is a good additional boost. I still crave real food and every once in a while splurge with solids but I pay a price for it with an obstruction generally following that meal. It works its way through eventually but it just takes a while. I do have to say the buffalo wings on Sunday were very good!
I start the extra Lanrenotide tomorrow but still don't have the Afinitor scheduled yet. I don't know how long it will take for the insurance company to approve but hope it won't be too long. My local oncologist is a bit more concerned about side affects than Dr. Boudreaux but my TPN includes weekly monitoring of my metabolic system so we can keep a good eye on my kidneys and other functions.
I know I will have to return to full time disability for periods in the future such as the procedures in NOLA and a hoped for laparotomy sometime this summer but this is good for now. I will enjoy my time in the real world and look forward to the point at which I can return to work full time and, perhaps, actually get to ski next year or play hockey again.
Wednesday, February 10, 2016
Wednesday, February 3, 2016
Time for a plan stan
It has been forever since I have posted but things have been kinda bland for a while. My digestive tract continues to be tentative with alternating weeks/days of obstruction and semi-normal behavior. We have increased the calorie count on the TPN to just under 2300 calories per day and I am hoping that this is able to reverse some of my weight loss.
I currently am at about 144 pounds and have struggled with fluid retention. The TPN is 1.5 liters of fluid per day and at times my fluids get a bit out of whack and it takes a couple of days/weeks of additional diuretics to bring it back in line. As of the start of this week, I no longer have swollen ankles or feet so the 144 pounds seems to be a valid weight at this point.
Now, on to the plan. We met with with Dr. Boudreaux in New Orleans this past Tuesday and when we had to remind him of our last surgical visit with him, thought this was going to be a wasted trip. He then excused himself to talk to some other doctors and then came back with a big plan. There are portions of the plan that are certain and some that are uncertain at this point so I will deal with them separately.
For certain, we will be doubling my injections of Lanrenotide. This is the relatively painful shot I used to get every four weeks in the glutes and we will now be doing it every two weeks. We will also be starting a new chemo drug called Afinitor. A recent study showed that the use of Afinitor was able to give significant progression free response in mid gut carcinoids and we are hoping I am one of those to respond. It also has the effect of softening scar tissue which is a large reason for the problems I have digesting food.
We will run these for 3 months and then re-evaluate tumor markers to see if we have reduced tumor burden and improved the overall situation. This is the known portion of our new plan.
The unknown portion involves two separate procedures. First, another doctor at the NOLA clinic believes he can place the nano-knife probes to get the tumors near the rectum. He is more talented in this area than Dr. Boudreaux so it is something we will try. We also may get it done up in Denver if Dr. Eric Liu (another carcinoid specialist) knows of a nano-knife expert that could reach the tumors.
The second portion is to directly address the tumors in the liver for the first time using Transcatheter Arterial Chemoemobolization (TACE). This is a procedure where a catheter is fed through an artery in my thigh and up to the liver. Chemo drugs are then directly introduced to the tumors with the hope of killing them. The liver is fed by two different blood supplies, the hepatic artery and the hepatic portal vein. The liver tends to get about 75% of its blood supply from the vein and the tumors almost always live on the oxygen rich artery output so targeting tumors and not liver is somewhat straightforward.
It does carry risk for other organs such as the kidney but they will try to protect them as much as possible with other medications. They will also inject dye through the artery and follow it on x-ray to see where it goes. They can then temporarily 'plug' some holes to try and reduce the collateral damage.
Reducing the amount of tumor in my liver is hoped to reduce the amount of carcinoid syndrome I experience and also reduce the likelihood of carcinoid crisis. My understanding is that the hormones that the tumors give off are often filtered out by the liver but when the tumors in the liver get too large, there is no filter to prevent it from reaching the rest of the system which causes my crashes.
If the doctor in Denver can do the nanoknife, we will do that soonest. If not, we will wait and do the tumors near the rectum along with the TACE at the same time in NOLA in about 3 months. Once this is all done, we will hopefully then be in a position where I could tolerate a major surgery which could be done to address the tumors wrapped around the ureters and possibly free up my bowels a bit.
It is hopeful to have a plan. It is good to know what we are going to be doing. It is nice to know there is a hope to get me to the point where I can eat somewhat normally because I love food. It is nice to have a goal that keeps me around for a while longer to enjoy my kids' college, calculus, and athletics.
I currently am at about 144 pounds and have struggled with fluid retention. The TPN is 1.5 liters of fluid per day and at times my fluids get a bit out of whack and it takes a couple of days/weeks of additional diuretics to bring it back in line. As of the start of this week, I no longer have swollen ankles or feet so the 144 pounds seems to be a valid weight at this point.
Now, on to the plan. We met with with Dr. Boudreaux in New Orleans this past Tuesday and when we had to remind him of our last surgical visit with him, thought this was going to be a wasted trip. He then excused himself to talk to some other doctors and then came back with a big plan. There are portions of the plan that are certain and some that are uncertain at this point so I will deal with them separately.
For certain, we will be doubling my injections of Lanrenotide. This is the relatively painful shot I used to get every four weeks in the glutes and we will now be doing it every two weeks. We will also be starting a new chemo drug called Afinitor. A recent study showed that the use of Afinitor was able to give significant progression free response in mid gut carcinoids and we are hoping I am one of those to respond. It also has the effect of softening scar tissue which is a large reason for the problems I have digesting food.
We will run these for 3 months and then re-evaluate tumor markers to see if we have reduced tumor burden and improved the overall situation. This is the known portion of our new plan.
The unknown portion involves two separate procedures. First, another doctor at the NOLA clinic believes he can place the nano-knife probes to get the tumors near the rectum. He is more talented in this area than Dr. Boudreaux so it is something we will try. We also may get it done up in Denver if Dr. Eric Liu (another carcinoid specialist) knows of a nano-knife expert that could reach the tumors.
The second portion is to directly address the tumors in the liver for the first time using Transcatheter Arterial Chemoemobolization (TACE). This is a procedure where a catheter is fed through an artery in my thigh and up to the liver. Chemo drugs are then directly introduced to the tumors with the hope of killing them. The liver is fed by two different blood supplies, the hepatic artery and the hepatic portal vein. The liver tends to get about 75% of its blood supply from the vein and the tumors almost always live on the oxygen rich artery output so targeting tumors and not liver is somewhat straightforward.
It does carry risk for other organs such as the kidney but they will try to protect them as much as possible with other medications. They will also inject dye through the artery and follow it on x-ray to see where it goes. They can then temporarily 'plug' some holes to try and reduce the collateral damage.
Reducing the amount of tumor in my liver is hoped to reduce the amount of carcinoid syndrome I experience and also reduce the likelihood of carcinoid crisis. My understanding is that the hormones that the tumors give off are often filtered out by the liver but when the tumors in the liver get too large, there is no filter to prevent it from reaching the rest of the system which causes my crashes.
If the doctor in Denver can do the nanoknife, we will do that soonest. If not, we will wait and do the tumors near the rectum along with the TACE at the same time in NOLA in about 3 months. Once this is all done, we will hopefully then be in a position where I could tolerate a major surgery which could be done to address the tumors wrapped around the ureters and possibly free up my bowels a bit.
It is hopeful to have a plan. It is good to know what we are going to be doing. It is nice to know there is a hope to get me to the point where I can eat somewhat normally because I love food. It is nice to have a goal that keeps me around for a while longer to enjoy my kids' college, calculus, and athletics.
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