Success without side effects from Yervoy +Opdivo

Posted By
Coach2u
6/8/2018 10:45am
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Replies: 12

I am stage 4 with tumors on liver and one on spine at t-12. Keydruda did not work after 4 treatments. Switched to Yervoy and Opdivo and just had second infusion last Monday. So far no side effects. According to Doc side effects are an indicator that the stuff is working so now I am concerned this is not working either.  Has anyone had success with these drugs and not had a lot of side effects?

i had a second opinion and that doctor said to consider radiation or spine but my doc says not a good idea at this time. Radiation kills the spot but does not allow for other options later like surgery. Any thoughts out there. Also second opinion said get MRI of spine and my doc said just got CT and MRI will not offer any new info. Therapy would be the same. So plan is to continue therapy for the 4 infusions and then get CT. It the waiting and wondering that is the hardest. So conflicted I want to do everything to get rid of this and live a little longer.

i was only 5% positive for PDL-1 so that is one reason he said Keydruda might not have worked. Sure hope this new stuff does.  MIke K.

Side effects are a good indicator from what I have been told but it may just take a little bit for your body to react to the drugs. My husband was on 4 cycles of Yervoy and Opdivo. He was doing better about mid way in and then started to feel worse. After 4 cycles, he had progressed so we moved to targeted therapy. With that said, he started having eye issues about 1 month into the targeted therapy. He saw an eye specialist who had been dealing with cancer patients for years and she was fairly sure it was from the Yervoy and Opdivo and NOT the targeted therapy. His eyelashes also started turning white around that time as well as his beard. All that to say, you never know when the immunotheraphy will kick in so just because you do not have side effects right away does not mean you will not.

Sure hope the targeted therapy works for your husband. Sorry Yervoy and Opdivo did not especially since he had to endure the side effects. MIke K.

Hi Mike, you might want to consider getting a second opinion. I have heard all the top guys talk about side effects over the last few years and how to manage the IRAE's but when it comes to saying that side effects mean the drug is going to work for you, that just isn't supported yet by data. At least not by any data that I have seen, if you consider that pd-1 patients have less side effects in general than Ipi patients and then the bad boy is usually ipi/nivo where about 33% of patients have to stop treatments due to side effects. Here is a link to Dr. Evan Lipson of John Hopkins on the topic, he gets to side effects (IRAE's) around the 4:30 min mark.https://www.youtube.com/watch?v=2MAmESB4czA

I would also suggest taking a look at the post after yours by Bubbles on radiation + Immunotherapy and the growing evidence that the two go hand and hand. Also on that topic, Dr. Jason Luke in Chicago is involved in some trials using SRS radiation + various immunotherapy and targeted therapy options together. It is a very interesting field of research, from a personal experience back in 2013 when I had SRS cyberknife treatment to my brain and while we waited to rescan the brain in December my oncologist did a ct scan of my chest to see what was happening with my lung tumor and it had reduced down in size from the earlier scans that summer. At that point I hadn't started on the immunotherapy trial as we were waiting to see if the brain was stable in order to qualify for the trial. So without any intervention of treatment other than radiation to the brain my 3.5 cm lung tumor had reduced down to 1.5 cm. Now the oncologist called this a spontaneous remission at the time but with what I know today I would say the tumors in the brain were killed by the radiation and the antigens were in the blood which allowed the t-cell to recognize and attack my lung tumor. I guess the point I am trying to make is radiation to one specific tumor might not be a bad thing to do at the same time as the Ipi+Nivo. Best Wishes!!!Ed

Thanks Ed very informative video  and gives me more questions to ask the doctor.  Appreciate it. MIke K.

Useful video - and kind of entertaining. Thanks, Ed. 

Getting major side effects is not necessary to have a response. I didn't have much in the way of side effects until after my 4th combo infusion. I then had a 3 week fever and that sucked, after that once it was Opdivo alone infusions I was back to my regular eczema flare ups and other minor issues I had previously anyway that treatment seemed to bring out more than usual. Never had any big time side effects. 6 month scan since being NED coming up soon, planning on still being NED :)

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

Hi Mike K., well, cant say for sure "if" side effects means that tumors are shrinking and disappearing but, when i was doing Pembro i had very little side effects minus thyroid level skyrocketing, tattoos bubbling up like braille, a bit of feeling blah, and after 7 bags of the stuff and 2 scans, Pembro did not cut it for me, first 4 infusions had bitter/sweet results, second ct scan after last 3 doses, results where poor with no such sign of shrinkage as if i didnt do the stuff at all! So, side effects determines if its working or not? Im not convinced of this theory, stay strong brother...

My wife's melanoma specialist, Dr. Hamid at Angeles Clinic, told us that it is always most desireable to NOT have side effects, and to not put much stock in those who claim they are an indicator of a good prognosis.   My wife has been on the Ipi/Nivo combo (now just Nivo) since last September.   She had some mild  fatigue and aches and pains on the combo, but they mostly went away when she moved to the Opdivo alone.   Her thyroid is going out now (no symptoms, just lab numbers) so they just started her on synthroid this week.

Great news, I have also seen Dr. Hamid and will go back if lip/nivo does not work. BTW hope it worked for her, you did not mention.  

Seems to be working well.   She had ulcerated primary removed December 2016.   SLNB was clear, PET scans were clear.   In July 2017 two brain mets showed up.   Craniotomy, gamma knife, then started immunotherapy.    Just got most recent MRI results today and she is currently NED and continuing with Opdivo.   Good luck to you and here's hoping for the best.

That is amazing! Tell her I said congratulations. NED is what we are all striving for right now. I have a scan in about two weeks and I already have scanxiety as I saw one person put it. It's basically all I think about, when I'm thinking about this disease and or this
process. Really hoping for good results, been seeing positive results on pembro but last scans had a spot to keep an eye on. If it's any bigger at all, we switch to ipi/nivo track which I don't really want to do but obviously will if it's necessary. I just have a lot of side effects on pembro already and I've heard ipi is way worse which I almost can't imagine at this point. My last infusion of pembro was just over a week ago and it made me for most part completely useless for an entire week. I was finally back to work today after missing most of last week living in a cloud of confusion and sleeping all the time.

Anyway, my point is side effects are exactly that, side effects of using the drug. If you have none, congrats, I wouldn't put any weight into how much it is or isn't working based on that, only scans can tell you progress.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983