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.
No comments:
Post a Comment