Cazz Update

Cazz Member Posts: 106

Having just completed four rounds of Cisplatin/5-FU, I went last week to MD Anderson for a CT scan to see what affect it had.  I had what they are calling a mixed response.  Two of my biggest liver tumors grew, one by a lot, while the third stayed the same.  All of the lymph nodes shrank a little bit and there were no new mets, so I suppose that is something.  Although I had hoped for better as I had a really hard time with this chemo, which landed me back in the hospital for a couple of days with vasospasms, which is just like angina and very scary - I thought it owed me better shrinkages!  The good news is that I am now eligible for Dr Eng's Nivolumab (Opdivo) clinical trial - or at least I will be once I have been chemo-free for 28 days.

Enrollment in the trial has been suspended for a while because they have to report the results of the first few patients to the NCI.  If response has been poor, or side effects too harsh, the NCI will cancel the trial.  Dr Eng's office doesn't think that will happen as the preliminary results have actually been very good, but it does leave them in limbo until the NCI signs off on it.  Complicating the matter from my point of view is that there are only 25 places left in the trial (total of 37 places, 12 already filled) and there are six sites vying for those spots.  I am number 5 or 6 on the MD Anderson waiting list :( and only two places open up at a time and they are offered to the next institution in rotation.  If all of the other sites can fill their allotment, then there is a distinct possibility that I won't get in - which is a very scary thought, given my anemic response to chemo.

In the meantime, I am going to take advantage of feeling good over a few chemo-free weeks and am going boating next week with some good friends up in the San Juan Islands, just off the coast of Washington State and British Columbia.  I need to get my hemoglobin levels back up and to be rested and strong for when I get the call to come in and be tested for the trial.

MD ANderson has said they will call me when enrollment resumes and then I will have to be available at very short notice to fly out to Houston when I get The Call.

Are any of my fellow wait-listers or current enrollees on this forum?  Would love to get your perspective on things.


  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    The next chapter?

    Ms Cazz -

    The site info says that you were last online here Sunday 17 April 2016, but it doesn't say when your last post was and I can't convince the search function to find yours.

    Were you able to join Dr Eng's clinical trial? If so, what was it like to be in one? If not, what treatment did you recieve?

    I've thought about you on and off for the past few years. When I told my oncologist how your anal cancer spread southward to your leg instead of the usual northward, she literally grew pale.

    My fingers are still crossed for you.