Tuesday, August 20, 2013


I am sorry it's been so long since I have updated.  I am so sorry you all have been kept at arms length not knowing what's going on, or how I am doing or anything for that matter.
The past good month has been a trying one for me.  I got really sick, vomiting and not able to keep anything down for a good three weeks.  No matter what, I drank, ate, didn't drink, didn't eat, no matter what  it came up.  Three straight weeks of this.  Nobody could tell me why. It was exhausting.
PAIN...oh the pain. I had the worst pelvic pain.  (due to the tumors) I was on pain pills for the pain, which helped the pain, but constipated me, and on top of that I couldn't function.  Every time I would take them they would knock me out.  So I was sleeping mostly all the time.  Sitting down became impossible.  It was so painful to sit on my bottom, no matter what surface.
I went in to see T-Gen for a clinical trial consultation.  The day of the appointment they told me they didn't have any studies open for me, but would keep an eye out and would let me know if anything came up.  The day later I got a call saying a trial opened up and I would be a match.  They needed me to come in ASAP for further consultation.  I went in with Scott, Mom and Grandma.  When they told me about a trial that I am eligible for.  Filled me in and all the details and I signed all the paperwork. They told me the first week of the trial was going to be hard.  They do MRI's, blood work, and biopsies.  It's a full week of this each day more MRI's, blood work and a biopsy.  I had a liver biopsy and adrenal biopsy.  The results to these tests are for trial purposes only.  They aren't looking for growth or spread disease or whatever.  These results are just for what the trial is looking for only. 
The trial drug is injected once every two weeks.  The first week I will be really worn down and tired, the week after I should have more energy.  The trial drug has been used in phase 3 studies and they have had much success!  So I am on a phase 3 drug in a phase 1 study.  They have high hopes this will work and so do I!
A few weeks ago I got a call from the trial and they told me T-Gen has opened up a study for Small Cell Ovarian Cancer.  They looked at my history and they are very interested in my tumor.  So when they did the biopsies they took extra tissue samples for them.  The best news is that if this trial drug doesn't work, we will have this as a back up plan.  They will do all sorts of tests and research on MY tumor tissue, to know how it grows, why it grows....EVERYTHING!  The testing will take about three months and so will trial drug I am on. 
I'm still getting sick at least once a day, I have a nausea patch but doesn't seem to work 100%.  I have a hard time getting food down, but I still try.  Some days are easier than others.
That's about it for now,
Thanks for reading!!!

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