My Carcinoid Cancer Journey

My kids suggested I chronicle my carcinoid cancer journey and experiences to share with others who may be experiencing the same thing. It's not the most comfortable thing to write about, but I'll do my best to share.

++++

The Early Warning Signs and Where I Go From Here

In August of 2011 we were RVing with some of our kids when I injured my lower back and was taken to the hospital by ambulance thinking I would need an epidural injection or two over a few weeks (I've dealt with lower back problems before) but this was not exactly the only problem.  Anyway after being admitted, the hospital said I had an infection in my blood that needed to be treated first so for several days they gave me strong antibiotics intravenously.  During this time I had diarrhea which was attributed to the heavy antibiotics which can cause what is know as C.dif an bacterial infection which they said I had also.

When I was discharge 11 days later I still had to get the epidural injections to correct the back injury so I went to the pain clinic in Jefferson City for that treatment.

A few weeks went by and the diarrhea continued and my stomach was not feeling right. I dealt with this for most of the remaining summer and throughout the holidays, finally the flushing showed up regularly so off to the hospital again for blood work, xrays, and a CT scan. The CT scan came back OK for my stomach, but Dr. McNelly said he saw 3 spots on my liver which he was very concerned about (these spots did not show in an earlier scan in August 2011)

Dr. McNelly set me up immediately with Dr. Rifkin, an Oncologist in Jefferson City.  After several more scans and tests (it had already metastasized to my liver) Dr. Rifkin said he was sure it was a Carcinoid Tumor in my mid intestine but they were unable to locate the origin.

More tests were needed so an Octrioscan was ordered 2/21/2012 and also 3/5//2012. I swallowed a camera and more blood work, (capsule test Dr. Paul King) to take pictures again trying to locate the origin and again with no luck.  On 3/7 2012 an endocolonoscopy still no luck finding the origin of the tumor.  3/8/2012 went to the emergency room at Capital Regional Hospital severe stomach pain from air trapped in intestine from endosolonoscopry.  These tests ran through January, February, & March of 2012.  Started the Octriotide injections in early April and another CT scan and blood work 4/11/2012.

Next step was to go to the University Hospital in Iowa City Iowa (4/6/2012) to see Dr. O'Dorisio an Endocronologist, his specialty is locating hard to find Carcinoid Tumors.  The first visit was a consultation, and now I'm awaiting the next visit to have the Galium68 scan, this is a much more defining pet scan to locate the original tumor.  This scan can also help determine whether the tumor is operable on not.  At this point Dr. O'Dorisio seems to think my liver is too burdened to operate but he said he would let the surgeon make that determination.

Once the Galium68 scan is done the first treatment will be scheduled in Basel,Switzerland.

Why Switzerland?  The treatment is very costly, but only 1/3 the cost  in Switzerland as compared to the USA. Dr. O'Dorisio said this type of Cancer is a slow growing thing like a turtle, but for some reason mine is acting like a turtle trying to run!  This is not very comforting but I feel that the Dr. O.Dorisio knows what he's talking about (this is current info as of 5/8/2012).