Immunotherapy side effects

Hi BDH, a couple of links will follow, second one gives ASCO update from June 2019 on how best to manage brain mets. The data is supportive of Ipi+nivo combination as the go to. First link features Dr. Evan Lipson from John Hopkins on how to manage Immune events, if you click on the next button you skip to next side effects. Four hits of next button will bring you to lung issues. Fatigue has been my biggest issue to deal with, I would want to make sure that they pay close attention to shortness of breath since Pneumonitis can occur. Best Wishes!!!Ed https://peerview.com/p/index.html?collection=150204478&presentation=150204478-p3&SpecialtyID=37&ProfessionID=12&Promocode=815#screen1 https://www.youtube.com/watch?v=gDu3x9xhH-U

Ed makes good points and shares a good resource. I would certainly ask about a trial of albuterol and a corticosteroid inhaler. Can’t hurt, but may well help with shortness of breath and forestall or help manage mild pneumonitis – something I dealt with during my 2 1/2 years on nivo as a single agent.

As far as time to response…you might find this post and graph interesting: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

Hope this helps. Hang in there. Wishing you and your husband my best. Celeste

Hello Bdho525! Wow, ok, deep breath, congrats on the fresh new baby!..
I hope your doctors will be a little more concerned for his side effects, especially his breathing! You just heard from the best about this, Bubbles & Sir Ed Williams it does sound like a “steroid” of sorts might need to come in to play for him, we wish him well and i hope the SRS knocked those Mets out of his head?? Please elaberate….take care and Thank You for taking care of him, my wife is a Caregiver for the elderly so, i can relate to you both being wall to wall, 24-7 giving out your attention to us needy sickly’s! We appreciate you….

Side effects are expected 3 weeks following a combo infusion while a response to immunotherapy is expected 8-12 weeks after the first infusion. Your oncologist may do a CT scan at 8 weeks but usually 12. I received only two of my combo infusions before I had to stop. My CT scan 8 weeks after the initial infusion showed 50 % reduction in tumor size. I was put on a high dosage of steroids for three and a half months. 8 weeks later my CT scan showed further 30 % shrinkage of tumors even while I was off immunotherapy and on steroids. I was in no rush to return to infusions for personal reason so next CT scan, 11 weeks later showed tumors have shrunk minimally or to be pessimistic, they remained the same (this CT scan was mid May of this year and my last infusion was Nov. of last year). I resumed single drug infusions biweekly and 3 months later there is 13.5 % shrinkage. I have no idea if this is normal or not but this is what has been my experience. I have no primary that they can find and have tumors in my lungs and liver. Prior to my drug induced liver injury I experienced extreme fatigue, numbness in extremeties, achy joints, fever, slight body rash like measles and felt as if each and every gland in my body was burning and was on fire.
Hope your husband’s side effects resolve themselves but just remember that he does not need to receive all four combo infusions in order to have a positive response.
Best of luck and enjoy your little precious bundle of joy!
Melanie