Hi,
When there is a new year, I think back to my perceptions of the future from my childhood. I guess by now I expected all our cars to drive themselves, after being linked to a rail (or something) on the street. I sure didn't imagine computers.
So, to bring you up to date on how I am doing... Last month I had an unexpected reaction to being on 40mg LAR of Octreotide. I had my dose increased from 30 mg to 40 mg in June or July 2011 to help with symptoms like excessive heat from the top of my head down to my sacrum. However, in December 2011 the 40 mg treatment backfired.
I was very tired on the 3rd day after my Octreotide shot and left a Christmas party early. The next day I had the horrible diarrhea that carcinoid is so famous for inflicting. I was sick 10 times. I used Welchol twice and gave myself 2 shots. It seemed like there was a halfway point where the medication slowed things down for a couple hours, and I got some rest. By midnight it was over and I got some sleep.
In the next week I became extremely weak. I should have never gone out on December 22 with just a cane to support me, but I forgot that people would be out Christmas shopping in droves. I was just getting my usual haircut, but had to walk about 200 feet from the salon back to my parked car. I was hanging onto my cane for dear life. Thank God, a kind soul in a white Honda Accord waited for me to get across a crosswalk in the parking lot and prevented other cars from running over me.
After that day, I saw my internist, and he prescribed a walker for me. I got an answer regarding what had gone wrong from my oncologist a week later. He read me a list of symptoms from his computer that sounded much like what I was experiencing. It, also, sounded lots like carcinoid cancer symptoms with the exception of the extreme weakness. They were the symptoms of having a reaction to Octreotide, my medication.
I had not expected to have problem with my cancer treatment, I just thought it was my cancer making me weak. So now we had a new puzzle to figure out. Should I change medications? Change the dose? What to do?
I went to Dr. Eugene Woltering who responds to questions patients post on the ACOR email list for carcinoid. He suggested that we split my Octreotide 40 mg LAR into two doses per month. Twenty mg every 14 days. My oncologist agreed to do that. I did not want to switch to Afinitor or another drug because Octreotide or Sandostatin is the drug of choice for carcinoid patients.
