I have been dealing with this cancer for 11.5 years now and have taken a number of steps to try and cut it back. These have included numerous surgeries and some medications to slow the growth. To date, the medications have been more of a biotherapy rather than a chemotherapy but that is going to be changing fairly shortly.
When it comes to cancer, the only way to guarantee a cure is to cut it out of the body and that is why surgery is often the first point of attack. When surgery (or similar radiation therapies such as cyberknife) is applied, you are able to actually go in and remove everything that is bad. The removed tumor can be examined for clean tissue on the edges, verifying you got all of it, and assuming it has not yet metastasized, the patient can be declared cured.
At my first surgery in 2001, they got good margins but were already able to determine that my cancer had metastasized to both the messenteric lymph nodes and to my liver. At this point, surgery can no longer be a cure but, fortunately for my cancer, removing the primary can almost double the life expectancy. When most cancers have metastasized, the next step of treatment is usually chemotherapy. Chemotherapies, as most of you know, are usually not fun. In some ways, a poison is injected into your body up until the point you can no longer tolerate it in the hope that it kills the cancer more than it kills your good cells.
For neuroendocrine cancers like carcinoid, chemotherapy usually is not terribly effective. Chemotherapies generally attack fast growing cells (cancers and your hair cells) and attempt to knock them out as they are dividing. Carcinoid is a fairly slow growing cancer so attacking fast growing cells is not very effective but there are some drugs that are proving to be good against carcinoid.
Assuming my kidney functions are up to snuff (just had a blood draw to verify my levels), I will be starting on two different oral chemotherapies. The first drug is called Temodar. Temodar is often given for brain cancers and is relatively well understood by most oncologists. Its most common side affect is nausea and they may give me some additional drugs to help combat the nausea as well. I will be taking this drug on a 28 day cycle, on days 10-14 of that cycle. There are some potentially nasty side affects and I am hoping that I don't fall prey to one of those!
The second drug is called Xeloda. Xeloda is another well known oral chemotherapy that is given for metastatic colon and breast cancers. Xeloda also may cause nausea and, again, additional drugs will be available to try and control the nausea. Xeloda will be on a 28 day cycle as well with my taking pills twice a day (once before breakfast and once after dinner) on days 1-14. Again, there are some potentially bad side affects and I am hoping not to experience those either!
Once my kidney function has been verified and I start on these drugs, I will be taking them for as long as they appear effective. After being on the drugs for 3 months, I will have another CT and MRI and then fly out to New Orleans to verify the efficacy of this treatment. The hope is that these drugs will be able to either shrink or stabilize the growth of the tumors for a significant period of time. At whatever point they prove to be ineffective, we will move on to another treatment such as Afinitor or Sutent which have shown a capability to stop growth but no tumor shrinkage is experienced.
What about PRRT? Well, the clinical trials are still at least six months off in the US (as they have been for at least 5 years) so the only real option there is to go to Europe at a cost of around $20k. Dr. O'Dorisio (the oncologist in Iowa I saw for a few years) is a big proponent for PRRT but generally does not advocate it for lower levels of tumor burden in the liver such as I have. I may have my most recent scans sent out to him and see what his opinions are WRT taking the chance on this treatment to slow down or cut back significantly on the tumors.
Today I am up in Steamboat Colorado, enjoying spring break with my family and getting in some nice spring skiing. Today, I am upright, not 6 feet under, and am able to play hockey and work. Today, I am alive and moving forward. I don't know for sure what tomorrow will bring but, for now, I will enjoy today.
