MD Anderson Clinical Trial Waitlist

Joan M
Joan M Member Posts: 409 Member

I traveled to Houston, Texas over the holidays to see if MD Anderson had anything better to offer than my local clinic.  I didn't like the idea of being on Folfiri "for the rest of  my life or unitl it stopped working" as my doctor in Fargo told me. 

The CT scan showed growth in a few tumors in my lungs which was expected.  It also showed at least one  hilar lymph node had cancer involvment.  My liver and Colon were clear of any active tumors.  My CEA was surprisingly low at 2.7. I haven't been on chemo since August 29, 2017 due to a gallbladder attack, biliary tube placement September 1, 2017 and subsequent failed attempt to remove my gallbladder November 16, 2017.  The doctor stopped surgery due to my gallbladder being surrounded by scar tissue, attaching it to my intestines and the bile ducts also surrounded by scarring.  

The answer was that Folfiri or Folfox are the best treatment for me at this time.  Of course, I shold have known as all cancer centers share information and treatment.  However, I was given some hope that if the tumors disappear over time, I may be able to go on a maintainence chemo again.

Coincidentally, my doctor in Texas trained with the GI Cancer Specialist and researcher at the Mayo clinic in Rochester, Minnesota, Dr. Axel Grothey whom  I saw in May 2016.   

I was also placed on a waitlist for clinical trials, and even a possible trial including immunotherapy for colon cancer.  

To stay on the waitlist, I must travel to Houston for all my scans and have bloodwork done there every 3 months. 

I believe immunotherapy is the key to eradicating cancer.  Praying for good results in the trial, whether I actually get accepted or not. 

I really dread being on the Folfiri indefinitely.  My doctor actually wanted me back on Folfox, but I live in North Dakota and no way do I want to deal with those side effects to cold in this subzero weather! 

Starting Folfiri January 19th.  I'm praying that I do not experience the dreadful side effects.  And although it may sound vain to some, I am praying that I don't lose my hair again.  

I haven't been on the CSN forum since before Christmas, so hope everyone had a Merry Christmas and Happy New Year!


Wishing you all the best,