My Nivolumab Trial Experience

Hi All,

Sorry not to have reported in earlier, but it’s been quite a traumatic time.  I posted when I got into the Nivolumab (Opdivo) Clinical Trial at MD Anderson, I was so excited as I was convinced that I was going to be one of the many who had shrinkage, gained stability, or for whom the tumors disappeared forever.

After four bi-weekly treatments with few side effects – fatigue and mental fuzziness were probably the worst – it was time for the first CT scan to see how things were going.  They told me that I could have up to 40% growth and/or four new nodules and still stay in the trial as at this point they can’t distinguish between inflammation and debris, which would indicate tumor death, or genuine growth.  I was extremely disappointed that not only did I have 20% growth across the board on the biggest liver tumors, but three or four new nodules had popped up in my lungs where I didn’t have any previously.  Still, I clung grimly to the hope that the supposed growth was really the death and destruction bit and we’d see real shrinkage on the next CT after treatment 7.

Then I saw Dr Eng.  She agreed that I could stay in the trial but she showed me on the scan how the biggest liver tumor had grown, now 8.6 x 9.4 cm (3 ½ x 3 ¾ in – yikes!) and was now encroaching on my hepatic artery and bile duct.  She said it would be a real gamble to keep hoping that the Nivolumab was working and the tumor would shrink in that particular spot before it blocked either the artery or the bile duct.  She suggested that I consider having SIRT spheres treatment, which of course means that I would have to drop out of the trial.  The spheres are generally only used on the liver mets of colo-rectal patients and MD Anderson has only ever tried them with anal liver mets once.  This was about six months ago with a lady somewhat like me, desperate to get into a clinical trial, but with liver mets that were becoming life-threatening.  Apparently the spheres worked very well on her and they are very interested to see how they perform on me, their 2^nd anal met patient. 

 I felt like I didn’t have any other options at this point, so I dropped out of the trial and met with the Interventional Radiologist.  He said that from the CT I looked like a good candidate for the spheres, but of course they had to do all their testing to confirm that.  I don’t know what will happen if I’m not eligible as I don’t think they will do any surgery – at least not until the bile duct gets blocked and then they will have to.  The pamphlet they gave me said that the spheres are generally used with chemo, but nobody has talked to me about chemo yet, so I guess I will find out when I get there.

I actually wrote this a couple of weeks ago.  I’ve since been back to Houston and received the spheres.  I will update on that when I can gather the energy.

 Carol