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Yervoy and Opdivo Therapy

txbarton's picture
txbarton
Posts: 89
Joined: Aug 2009

My oncologist is trying to get insurance approval for me to start Yervoy and Opdivo therapy soon. We like to travel by RV, he said I could never be far from a good medical facility and certainly never out of cell phone coverage, that some of the potential side effects are sudden and deadly.   We know our trips will have to be short and nearby.

Have others on that therapy had similar advice from their oncologist?

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

My drug trial was Sutent-Nivolumab. another arm of that trial was the ipi-Nivo, so my doctor is well cersed in the side effects. If I am not mistaken, the treatment is a 2 year program, so any limitations will likely be limited to that interval. The side effects can be serious and quick, as they can be with any treatments. the Ipi Nivo arm saw similar success rates to my arm, but had less toxicity. Fir me, the risks were dramatically outweighed by the potential benefits. I have been in the sutent-Nivo combo since 2013, close monitoring of my vitals and organ functions were a big part of the trial. After a few years, I was able to work treatments around vacations and trips. I have basically had a normal life except for taking off time from work for infusions every three weeks. Initially, there were some concerns that required some light medical attention, but evryone is different. If there is a serious oroblem, you don't want to be in the middle of nowhere, at least when you initially start the therapy. 

txbarton's picture
txbarton
Posts: 89
Joined: Aug 2009

Thanks for the reply, Darron.  Yes, the Yervoy/Opdivo therapy is 2 years. A 4-hour infusion of both every 3 weeks for 4 cycles then a 30-minute infusion of Opdivo only once a month for 2 years.  My oncologist said only 1 patient out of 5 get all 4 combo infusions. Didn't understand if it is because they don't need it or can't tolerate it.  Hope it's the former. 

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

My suspicion as to why they don't complete is due to toxicity. that is also the reason they don't want you traveling far. If there is toxicity, it can be dangerous IF you don't address it. Most of the incidents I have hear about are treated with steroids and they clear up. My thyroid is basically dead, but I'll take synthroid over stage IV progression any day of the week.

Lorafoster26
Posts: 1
Joined: Dec 2019

I have had 3 treatments optivo yervoy. And 4 treatments just Optivo Monthly. Thyroid is destroyed. taking meds for for thyroid. Lots of pain in my kidneys lately. Can't even go shopping or stand in one spot for mor then 10 minutes. 

eug91's picture
eug91
Posts: 263
Joined: Jan 2019

Consider checking out smartpatients.com - there are several people there with experience with ipi/nivo and any side-effects.

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

Sorry to join this conversation so late.

Potentially the SE's can be serious, but mostly they are a lot less than with other cancer treatments, so dont be unduly alarmed.

My own experience with immunotherapy was wonderful and the outcome could not have been better.  Yes, I also lost my thyroid, but Hey.

Best Wishes, Fred

JudyCroy's picture
JudyCroy
Posts: 4
Joined: Jul 2019

So the Opdivo or the Yervoy attacked the thyroid somewhat like autoimmune thyroid disease? Doesithpen to every patient? Do you just take thyroid replacement?

JudyCroy's picture
JudyCroy
Posts: 4
Joined: Jul 2019

My oncologist nixed the idea of traveling until I finish the drug combo, and am on a once a month course for maintenance. That was disappointing. I had hoped to go see the Grand Canyon. Has anyone had experience with the once a month maintenance dose?

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