I had a 9cm tumor (fibro myxoid sarcoma) removed from my upper arm in 1995 and 35 treatments of radiation after that. 5 years later (1999), nodules began showing up in my lungs and in 2004, my surgeon removed 25 nodules from all sections of my lungs. There was one nodule that they could not remove going in from the front so that one is still there and measures 5.2cm by 8.5cm as well as several other smaller ones.
In Feb, 2006, I started the Perifosine clinical trial and was told about the gastrointestinal side effects, but went into the trial with the idea that if anyone could take it, I could.
Initally, the first week or so things seemed to be OK and I thought I would be able to tolerate it, but it appeared to build up in my system over time making me sicker. After 6 weeks I took a two week break to get myself back to feeling better and then went back on it for another 4 weeks. My scans indicated "grossly unchanged" tumors and no new tumors. I agreed to continue the clinical trial and was on it another 3 weeks when the sickness started getting worse. I was working full time, (working from home on Fridays) but the nausea, diarhera and bad feeling began to move into the workweek. So I was sick Friday, Saturday & Sunday and carryover into Mon, Tue and Wed. Then I started anticipatory sickness on Thursday before I would start another regimen on Friday. After being sick from Feb to June, I decided to come off the trial. I was told that if the perifosine worked, I would be on it for the rest of my life and right now I am too healthy to be sick all the time. However, I can't say for sure what I would do if I did not have the choice. My cancer is Fibromyxoid Sarcoma and is is considered low grade for the time being.
I'm praying that they will figure out a way for perifosine to have less side effects.