Stu Chalmers Carcinoid Story - continued

November 2002
Chromagranin A started to rise, and was having some breakthrough
diarrhea. Dr. Pommier accelerated me to higher dosage of Sandostatin. My LAR dosage was increased from 20 LAR to 60 LAR in 11 months. The increased LAR seemed to stall the Chromagranin A from going higher; but it had already trended from around 50 to around 200. For practical purposes I will attach the graph that I made of CgA and 5HIAA against time with specific data around the levels of Sandostatin LAR. I show this because I believe very strongly that each of us should take the data that we receive from this testing, document it and show trends. The reason is that every time a test is performed, the oncologist can see the single datapoint, but if we graph the data to show a trend, we can see and show the oncologist what is going on.

March 2004 my Chromagranin A shot up to 1700; note that 5HIAA did not change appreciably. I immediately talked to Dr. Pommier. He asked for a CT scan and the trend chart. We sent that to him and based upon CT scans his opinion was that the liver needed some major intervention and started his Chemo infusion to Chemo embolization protocol in May. I went to Portland each month from May through August. We decided not to do the CE part due to holidays and a grandchild due in October, with Dr. Pommier agreeing to do the CE in January 2005.

Below I include a photograph of the port as they took it out in early September. The port is placed just under the rib cage and is connected to the ribs with some special string to keep it in place when they access it to put in the 5FU. When the port was taken out a couple of High School students interested in medicine were allowed to watch and I had them take some snap shots during the process. The port itself has an access membrane that is about the size of a Quarter, just to give a frame of reference for size. A complete write up of what Dr. Pommier does is included in the Carcinoid conference from the 2003 October conference in Santa Ana, CA. The transcript of his talk is available on the Carcinoid website that Dr. and Mrs. Warner keep up.

October 2004
Began to have a lot of abdominal pain. Dr. Pommier asked for another CT scan and Octreoscan, resulting in him being more concerned with my Peritoneal disease than liver disease. The CT scan was showing the mets to my mesentery. Dr. Pommier indicated that when he put in the port in May he noticed that the sesame seed sized mets were now the size of peas and lentils. His advice was that I had several options. One was to do surgery to remove the adhesions and as many of the peritoneal mets as possible. However the downside of this was I was losing weight and recovery might be very difficult after a 12 hour surgery. The second option was to have the treatments with radioisotopes being done in Europe. We discussed Rotterdam, Milan and Basel and decided upon Basel. Dr. Pommier has referred patients to them before and is very comfortable with their expertise and process. Dr. Pommier began conversing with Basel folks in late December once he had my Octreoscan. They will only consider a patient that has had an Octreoscan which shows a lot of positive uptake as well as a healthy kidney function.

January - 2005
In lots of pain, taking pain meds. Dr. Kneifel from Basel contacted me and indicated that the treatment has to be 60 days minimum from last LAR shot. When LAR wears off take sub Q, then nothing for 72 hours before treatment. He had to look at blood work and also get electronic copies of Octreoscans before agreeing to treat me. Finally we set the date of the first of two treatments to be on March 7. I will leave Austin March 4 and return on March 11. My second treatment will most likely be in June time frame to fit my schedule, Basel's schedule and allow the body to recover from the trauma of the treatment. Most of the literature on this subject shows before and after about 1 year apart, so the process of radiation is aggressive right away, but continues on with results for several months. There are some great reports on the subject available in PDF file, but they are very technical. In the process of working on the Basel treatment as an alternative I found great testimonial information from Gary Zhou and it is written for us Carcinoid types in layman’s language.

If anyone is interested Gary Zhou from Denver went through the same treatment last year and his emails can be pulled up from the ACOR group archives. The Rotterdam option is also a good one. Kevin Pyle has written quite a bit about his experience and it is available in the ACOR archives. Both Kevin and Gary have been supportive in responding to emails and taking phone calls. At this time Rotterdam only does the Lutetium 177 whereas Basel does both Lu 177 and Yttrium 90. Dr. Kneifel in Basel told me that the first treatment that I will get will be with the Yttrium 90 and just prior to my second treatment they will assess with Scintigraphy (Octreoscan) and may use more Y-90 or a cocktail of Yttrium and Lutetium.

Once I have gone through the process and see/feel the results I will try to write this information up and make it accessible to CCTS as well as Susan Anderson’s site.

God has been faithful, giving me hope and the strength through this whole ordeal. I have been able to work full time, then part time with disability and my colleagues have been very supportive. My input is to drive your understanding with data; use a Carcinoid specialist coordinated with a local oncologist and when the markers and your body are telling you that something has changed insist on doing something different. I don’t know how long I will last; 1 year or 15 years, but either way it is also comforting to know that there is support through fellow carcinoids, doctors and from friends and family.

For More Information Contact:

Texas Carcinoid Support Group
Carol-Anne Wilson 2609 Windsor Place Plano Texas 75075
Tel: 972-867-4417
FAX:
Internet: carol-anne.wilson@carcinoid-tx.org