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Delayed Response?

MyraC's picture
MyraC
Posts: 8
Joined: Jan 2017

My husband had his left kidney removed along with a 13cm tumor and 27 cancerous lymph nodes in November 2016.  He has remaining mets in some neck lymph nodes and chest area lymph nodes, he is Stage 4 (5% sarcomotoid).  He started a trial at UT Southwestern that incorporated 5 doses of SBRT on one lymph node and four doses of Opdivo (3mg) and Yervoy(1mg) every three weeks.  He has had three infusions so far with very few side effects (flu like symptoms for maybe 3 days after the first two infusions).  He had his first set of post treatment scans after two infusions at 6 weeks.  Although, one lymph node grew by 1mm his results were "stable disease" and this didn't count as a progression as far as the clinical trial was concerned.  On the trial he is only allowed  one progression.  His oncologist said that past trials have shown a decrease in tumor burden 90 percent of the time within the first twelve weeks. Although, his scans occured only after two infusions and his oncologist is optimistic, I'm concerned that he should have had a measurable reduction by 6 weeks if he was going to respond to the drugs.

My question is... Has anyone else been on these drugs and been stable or had a mild progression at 6 weeks but later had a reduction in tumor size?

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

i am a stage IV patient as well. October 2012 surgery removed a 17 cm tumor. I had a 3.4 cm tumor on my other adrenal gland and several lung nodules when I started on  an opdivo -Sutent trial in January 2013. My 1st scan at 6 weeks showed a 12% increase in size of the adrenal tumor, but it was due to swelling of the tumor because my immune system was killing it ofF. Every scan after that showed decrease in size.

Do not be worried about an increase at 6 weeks. If they say stable, believe them! it is normal for immunotherapy (opdivo) to show slight inflammation with initial treatments. up to 15% was considered stable if I recall correctly In my trial....it has been a long time. I have been cancer free since 2014.

MyraC's picture
MyraC
Posts: 8
Joined: Jan 2017

Darron, thanks so much for your response. So wonderful to hear that you are cancer free!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I began nivo in late fall 2011. I think it was about march 2012 when I was first told of my tumors shrinking and disappearing. Continued until june 2013.

MyraC's picture
MyraC
Posts: 8
Joined: Jan 2017

Thanks Foxhd! We know that my husband is lucky to have access to these drugs and cancer doesn't affect our day to day lives, but the weeks when he gets scans are unbearable. It's comforting to know that the meds can take time to work.

Ed Brabant
Posts: 61
Joined: Apr 2013

I was on Votrient for 4 1/2 years and I always had scan anxiety. Now I am on a clinical trial of Varliumab and Nivo. First scan is the first week of June. I have already accepted that the first scan won't show any good results. I feel great. No side effects yet. This week is infusion #4.

MyraC's picture
MyraC
Posts: 8
Joined: Jan 2017

Good Luck on your fourth infusion Ed.  My husband has his fouth infusion of Opdivo/Yervoy tomorrow.  After that he stays on the Opdivo.  We were told that he will get clearance to travel further than commuting distance from the hospital when he gets off the Yervoy.  On the Yervoy, he was also told not to take any asprin/Tylenol or drink any alcohol because his liver was so sensitive.   He is excited that he can drink a craft beer on Father's Day.

 

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