Catching up - health-wise

It was around this time last year that I got the news that my scans showed lung metastasis.  Thus began the search for a treatment that would shrink these nodules.  Because of the number and location, surgery is/was not an option.

I started with a chemo pill which is an mtor inhibitor called, Everolimus.  That didn't work.

I moved on to a 'traditional' iv chemo called Gem/Tax with Neulasta.  I did the first round in Houston at MDAnderson and then got to, thankfully, get this treatment at home in Austin.  This was a really tough season for me and my family.  Not only were the physical side effects hard, but the emotional ones, were too.  I lost my hair, eyebrows, eyelashes, everything....  My blood counts were all over the place and with fevers,  and a PICC line ---I think I was in the ER or admitted to the hospital every week I was on this treatment.  While, there was some shrinkage, my lungs became inflamed and so I was taken off.  I didn't respond to this treatment like my Dr. thought I should have responded, so the case was building for my diagnosis as more on the PEComa side vs. Leiomyosarcoma.  

Next, I tried another treatment that targets Pecoma's...this treatment was in pill form, too and called Sorafenib.  I began to heal from many of the side effects of Gem/Tax and tolerated this pill really well.  Unfortunately, the lung nodules continued to grow.  

*I was then given 'the talk' by my oncologist regarding prognosis, survival and 'tips' and ideas to communicate my love and wishes when I'm gone.  This was devastating for me.  I felt like my Sarcoma Onc was giving up on treatment options.  She did say she would recommend me to the MDA clinical trial department and also another clinic in San Antonio.*  

Anthony went back to Austin to be with kids and I stayed for my brothers wedding.  The next day, the MDA clinical trial department contacted me and said they wanted to see me that afternoon.

The clinical trial doctor and staff have added hope to my care.  They enrolled me in a clinical trial of an immunotherapy drug.  I had to have a biopsy of the lung nodules, which was a bit tough, and that was the first time since my second surgery over two years ago that had new tissue to confirm diagnosis.  They have confirmed that I have Pecoma.  Basically, Pecoma is a rare type of smooth muscle/tissue cancer.  It has only 1 clinical trial drug ever in it's history and very few diagnosed in this country and beyond.  How did I get this?  Why?  That's another discussion for another day. 

Right now, I have to go to Houston every three weeks for an iv infusion.  However, I'm tolerating it pretty well.  I've scheduled my treatments so that I can race back to Austin in time (most of the time) to see BCS Bears basketball games.  All three of ours are currently playing.  It's an exciting time and super busy.  Back to trial details... I'm the only one on this trial that is diagnosed with Pecoma.  So, I'm somewhat of a guinea pig.  However, there is hope that it will work for this type of Sarcoma.  

Right now, I return for my next infusion right after New Year's.  Three weeks later, I go for scans to see if the nodules are responding.  If I do not, then I will be taken off the trial and have to look for another option.  Would you pray that these tumors shrink?  

Thank you friends and Merry Christmas!