My Nivolumab Trial Experience

Cazz

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

TraceyUSA

Thank you

for posting Carol.  That is all very insteresting.  I hope and pray it works for you. 

Best wishes,

Tracey

mp327

Carol

Thank you so much for the update.  I'm very sorry that your results from the trial were not as hoped and that you had to drop out.  However, the spheres sound promising, based on patient #1's results so there is hope!  I do hope you will recover from that procedure very well and I look forward to your next update.  This is all very interesting.  In the meantime, please know that you are in my thoughts and prayers.  Take care.

Martha

judyv3

Sending Positive Thoughts

We all have in the back of our minds that nagging thought that says what if?  It sounds like you are receiving the best medical care possible and helping all of us along the way.

I am praying for you that this treatment works.

Thank you for sharing.

Judy

lizdeli

judyv3 said:

Sending Positive Thoughts

We all have in the back of our minds that nagging thought that says what if?  It sounds like you are receiving the best medical care possible and helping all of us along the way.

I am praying for you that this treatment works.

Thank you for sharing.

Judy

Carol

Thank you for the update. I am so sorry that your journey has been so difficult. I pray that the spheres will be successful and that you will be the 2nd patient receiving this treatment with good results that will provide hope for others. 

Liz

lp1964

Dear Friend,

I am very sorry for the disappointing news. You shoul search or post on the colorectal forum about your hopefully upcoming treatment. There ate many people who have had it there. 

I wish you a quick resolution regarding this matter.

Laz

pializ

lp1964 said:

Dear Friend,

I am very sorry for the disappointing news. You shoul search or post on the colorectal forum about your hopefully upcoming treatment. There ate many people who have had it there. 

I wish you a quick resolution regarding this matter.

Laz

Cazz

Hi Carol,

I have been thinking about you and wondered how the trial was going for you. I am sorry that it hasn't lived up to expectation & that it hasn't given you the outcome you deserve especially as it has been so problematic. I hope the spheres are more successful. 

Best wishes

Liz

jcruz

Carol

I'm so sorry that this hasn't been successful for you.  I hope you get better news about the spheres.

Thank you so much for posting about your experience with the trial.

Best, Janet