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Kao

OPDIVO (nivolumab) + YERVOY (ipilimumab)

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Is anyone currently using this combo or have you used it in the past? My mom will be using it soon in a trial at MD Anderson. I would love to hear any experiences or thoughts. Thanks

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Kao,

I don't recall anyone reporting about this combo.  With it being a trial, it may be relatively new and not a widespread option at this point.  LUNGevity has a Facebook forum for immunotherapy patients, it's fairly active.  Perhaps someone there might have experience with the combo.

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Hello, 

My mom does this combo at MD Anderson in Houston. She has been on it since March.  She has stage 4 NSCLC adenocarcinoma with at least 6 Mets in her brain.  Not operational.  She had full brain radiation in February.  June 29th she had a lobectomy and they took the right upper lobe out.  Today she has her PET and MRI.  So far she has had a good response.  However she has had a reaction. From the reaction she now has adrenal insufficency. I feel like I've read every article ever on these medications and there's just no definitive answer.  Yes or no. I researched and researched before she started. I even asked the oncologist and research nurse a question they refused to answer, "what would you tell your mom to do?" I couldn't help myself.  Shes my mom. You only get one and I plan on keeping mine as long as possible!

I guess what I'm saying is from what I see they work.  I'm not sure how well because I really dont have anything to compare to. My recommendation is ask lots of questions. Keep a journal on how she feels and advocate for her.

How they found my moms adrenal Insufficiency-

Over the summer after moms lobectomy and the well into her treatments she began getting sick.  Couldn't eat. Vomiting, chills, she couldn't walk and couldn't stay awake to have a conversation.  I was really scared. I thought this was it.  I was freaking out, but couldn't let her know.  We live about 3 hours from Houston so I took her to our local ER after talking to one of the oncologists at MD Anderson and having them agree with me that she would not make it to Houston in a car much less a couple more days for her appointment.  The ER treated her symptoms and gave her meds to make her better.  It worked temporarily but only about 2 weeks. One week in the hospital and the next in a rehabilitation center. When she came home and her meds changed she began going downhill again.  After another week in the hospital and another at home severely deteriorating I had had enough! Loaded her in the car drove her to Houston and they diagnosed her in one day with pneumonia and adrenal insufficiency. It was a horrible summer, but now we have a handle on it! FINALLY! 

Just ask questions. Ask what reactions other people on the same trial are having. How do you recognize them?  Again advocate! If you know something isnt right at any point in the trial speak up. The doctors nurses and staff here are great, but no one loves your momma like you do! :)

Good luck to your mom! 

I'll give you more info tonight when we get some more results and after our long drive home.  I have a million questions lined up now that were further in the trial. FINGERS CROSSED

Do you know the trial name? My mom is on Lone Star

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Hi Mom’s Advocate,

I’m so sorry I didn’t see this before now. I did not get much response and after a while, I stopped checking. Thank you so much for all of the information. How is your mom? I really hope it is working for her. 

My mom is also slated for the Lonestar Trial. Unfortunately, she had a pulmonary embolism and spent nearly a month in the hospital. The PE really weakened her, but she is fighting to get stronger. We go back in a little over a week to see if she is still a candidate for Lonestar. We will both be pretty devastated if she’s not. 

The good news is that as of about two weeks ago, her cancer hasn’t spread. Fingers crossed she will still be eligible for Lonestar. 

I’d love to hear more about you and your mom’s experience. Thanks again for responding. 

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Thank you for replying.  I sorry to hear your mom had a PE. That's so scary.  We actually just got some bad news this past Tuesday.  Mom's cancer is coming back and spreading more.  This takes her out of the study.  She now has to start chemo.  She is devastated and we are so scared of what comes next.  

The meds worked for her for about 8 months before she began progressing.  I am just trying to stay positive and hopeful.  It's hard! 

I hope your mom is still eligible for the trial.  If not remember there is still pembrolizumab (Keytruda). Her doctors will know what's best for her I'm sure.  It's just all scary. Bottom line-CANCER SUCKS

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Hi, Momsadvocate,

We’re thinking of you and your family. How are you doing? Please post an update when you can!

With gratitude,

Lauren

Digital Community Manager
LUNGevity Foundation

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