Sarah Cannon Research Center

It's been a while since I posted to the CSN.  I was diagnosed with a reoccurence of inoperable anal cancer about a year ago.  My first occurence I went through concurrent chemotheraphy and radiation and was given a 90 percent chance of living.  Things were good until last April/May when I experienced severe pain.  An ER visit confirmed a mass in my pelvic wall and muscle tissue.  I was given 3-6 months to live if I did nothing.  The treatment plan from my oncologist was to shrink the tumor and then radiate what was left with the possibility of surgery after the tumor shrunk.  The tumor was pushing against my bladder wall, uterer tube and sciatic nerve which required me to have a bag and then eventually I was able to have a stent to allow urine to pass from my kidney to my bladder.  I underwent Chemotherapy with Cisplatin and it did nothing to shrink the tumor.  

I decided to go to MD Anderson after reading posts on this board.  I met with Dr. Eng hoping to get into a clinical trial that she had available for reoccuring and metastic anal cancer.  After a brief discussion, she told me she considered my cancer as localized and that I should have surgery and to meet with their surgeon. Even after I told her two tumor boards in Colorado told me I was not a candidate for surgery.  While I was at MD Anderson, I experienced a severe UTI bladder infection and was hospitalized.  I did not have a good experience at MD Anderson.  I will not go into the details, but after my visit I was very happy to get out of that hospital.  

When I returned from Houston, I then underwent sterotactic radiation.  Because of the location of the tumor, they could not radiate the entire tumor.  After the CT scan, it again showed no impact on the tumor and in fact it had increased in size.  

I am now participating in a clinical trial at the Sarah Cannon Research Center in Denver, CO.  I'm half-way through an will have a CT scan again early April.  I've been happy with the facility and the doctor who came from MD Anderson and spent eight years there.  I'm learning to deal with the daily struggle of pain management and my ever changing bowel habits from consitipation to several bowel movements a day.  As I'm typing this, I'm wearing depends because I was so constipated, I overdid it with the miralax, etc.  It find it painful to sit for any length of time and I also have a burning sensation in my vaginal area.  I'm currently taking Oxycotin (8 hours) and Gabapentin as a nerve blocker.  I take Oxycoden for any break through pain.  Every day is a struggle but my faith in the Lord keeps me moving forward.  

I feel very fortunate to still be here after I was told things like "cancer always win", you have three to six months to live, plan a trip and decide what you want to do with the last year of your life.  I am 56 years old and I want to live.  Fortunately, I have strong faith in the Lord and prayed to be at my only daughter's wedding next month.  I'm almost there.  

I'm looking for suggestions on how other women have dealth with the pain from their anal cancer and also anyone who has had any experience with the Sarah Cannon Research Institute.  

Thank you and God bless