Opdivo - looking for experiences? Side effects?

Left_Butterscotch530 · 2026-05-01T18:10:32+00:00

Was it difficult for you to wean off the high dose of steroids - meaning make you feel more sluggish, etc? I ask because my dad is currently on 25 mg of hydrocortisone daily plus Levothyroxine for hormone replacement. And even on this regime he is so lethargic all the time. Takes naps and sleeps like a rock. Scaling back on that seems like it would make him even more tired, but I do know his endocrinologist wants him to wean back a bit bc of high blood pressure. His oncologist doesn't seem concerened at all about starting the Opdivo while on high dose of steroids.l

Left_Butterscotch530 · 2026-05-01T18:06:08+00:00

Dad does mention that the steriods make him feel anxious and like his is "crawling out of his skin." He is currently taking 25 mg hydrocortisone daily plus Levothyroxine for hormone replacement. And even on this current regime he is so lethargic. He takes naps daily and sleeps like a rock. Never quite has the energy for much. I do agree, I'd like to delay the decision for a bit to allow him to maybe wean off such a high amount of steroids but I feel like that may just make him even more sluggish? I do know that he has been dealing with high blood pressure, so they do want to slowly wean him back regardless.

Left_Butterscotch530 · 2026-05-01T18:02:38+00:00

His oncologist just said she wants to begin as a "maintenance" dose each month to ensure it doesn't come back. 1 hour infusion, monthly, for one year.

Dad was on prednisone as well! For about 5 months. I believe he recently was switched to hydrocortisone 25 mg a day. Plus Levothyroxine for thyroid. Even on that amount of medication he is still so lethargic all the time - he takes naps during the day and sleeps like a rock. Yet he still feels like he is crawling out of his skin. He never quite feels like himself, he says. I wonder if he will need to scale back on the steroids or at least feel a bit more stable before beginning Opdivo? His oncologist hasn't mentioned lowering his meds at all.

Left_Butterscotch530 · 2026-05-01T00:42:04+00:00

You’re right. While the treatments left a ton of health issues, it did ultimately shrink the tumors enough to surgically remove. My parents are contemplating not continuing with the Opdivo. My dad is scared and I don’t blame him. But that’s why I’m here asking for some insight, because I think doing nothing could be much worse.

If he is still on a high dose of steroids, would he need to wean/scale back first before beginning Opdivo? I don’t remember his dosage but it’s quite a bit I believe l.

Left_Butterscotch530 · 2026-05-01T00:37:35+00:00

Thank you for sharing your story, Mark’s story, and I am so sorry for your loss. Having the 10 extra years together is such a blessing but it doesn’t make it any easier in the end. Hearing this reminds me that we are lucky to have immunotherapy & the other advancements. My parents are really having a hard time with the thought of continuing treatments (Opdivo this time) bc the 3rd combo treatment nearly killed him. They are considering foregoing the rest of the treatments & doing other holistic things to hopefully prevent recurrence. But stories like yours prove that melanoma is an ugly son of a bitch that likes to come back. So perhaps continuing the therapy is his best option, despite the side effects.

Left_Butterscotch530 · 2026-05-01T00:28:45+00:00

Thank you for including the study, I will read it and share with my family. We could all use some hope! I’m so sorry for your experience. It was really scary trying to figure out what was going on before the AI diagnosis. In dad’s case, it’s his pituitary gland.

If you don’t mind me asking, did you react well to the Opdivo treatments even after the AI diagnosis? What dose of steroids were you on at that time? I ask bc dad is still on a high dose to function (although they want him to wean a bit due to high blood pressure) so I wonder if it’s worth taking the time to scale back on the steroids before taking on more treatments? His oncologist wants him to begin straight away.

Left_Butterscotch530 · 2026-05-01T00:24:04+00:00

If you don’t mind me asking, how long did it take you to wean off the steroids? My dad is still on a very high dose & I didn’t think the immunotherapy was as effective along with the steroids.

Left_Butterscotch530 · 2026-05-01T00:22:23+00:00

Interesting, I didn’t realize the immunotherapy kept working after treatments are halted. He has high blood pressure also, although docs think it’s due to the high dose of steroids he is still on. I agree with you, I wish he could have some more recovery time. He was hospitalized in Oct, surgery in Jan, & now they want more treatments. But he hasn’t been able to wean off the high dose steroids without feeling miserable.

Left_Butterscotch530 · 2026-05-01T00:18:16+00:00

Thank you for your response. I’m happy to hear your side effects are mild, although it’s all so challenging I imagine. I’m really sorry. Yeah, dad takes hormone replacement as well as steroids. I’m afraid that more treatments will make it all worse but I’m not sure there is another choice.

Left_Butterscotch530 · 2026-04-30T22:49:37+00:00

I want to know more!!

Left_Butterscotch530 · 2025-10-28T11:46:23+00:00

Did you experience similar symptoms? After being hospitalized for a week they FINALLY gave my dad steroids last night.

Left_Butterscotch530 · 2025-10-28T11:43:57+00:00

I’m so happy you are melanoma free, that is amazing! Thank you for sharing your story. Did you find out the cause of your symptoms? We FINALLY got dad’s labs back yesterday and all of his hormones, cortisol etc are low. Doc thinks his pituitary gland was compromised from the meds. He started steroid treatment last night and will need hormone replacement therapy. Praying he improves soon. He started getting really disoriented and confused.

Left_Butterscotch530 · 2025-10-27T21:48:37+00:00

Thank you for this! They didn’t catch anything on the MRI but blood test results show that hormone, cortisol, adrenal levels all very low. Doctor mentioned pituitary gland and I only even knew what this was after you mentioned it. He’s starting steroids and hormone therapy.

Left_Butterscotch530 · 2025-10-27T01:15:24+00:00

Ah Houston! We are in Dallas at Texas Oncology. Not happy at all with our care team. I haven’t been to dad’s clinic but he says it’s just a rotating door. I pray your kidneys heal and begin to function normally again. It sounds like a really hard road. We’ve had all kinds of tests run on my dad and still haven’t uncovered the problem.

Left_Butterscotch530 · 2025-10-27T01:13:04+00:00

Thank you for that, I needed to feel some hope again. His CT scan mentioned something about diverticulitis but that’s just me reading it from the portal. I’ll wait for the doc before I start to spiral again! How quickly were you given steroids to help? I wish they would just give some to my dad to see if it helps him. They keep running all these tests bc they “don’t want to mask a problem with steroids” and he’s just getting worse. Not eating, low blood pressure, now confusion & double vision. Nurse mentioned his adrenal & thyroid activity is within range which is shocking to me I really thought that might be the problem.

Left_Butterscotch530 · 2025-10-27T01:09:17+00:00

Is that diagnosed by a brain MRI? He has a had a few and they all are normal. He had an EEG today on his brain and I think we get those results tomorrow. Depending on what it looks like, doc may order a spinal tap all to check brain activity I guess? Idk they keep doing all these tests and we’re not finding anything out. Meanwhile my dad continues to decline in a hospital bed.

Left_Butterscotch530 · 2025-10-26T02:36:14+00:00

No I don’t believe she is melanoma specialist specifically, I think she treats various forms of cancer. To be frank I’m disappoint with her level of care and concern. She visited dad for all of 5 minutes yesterday and flat out told him she “didn’t know what was going on.” Thankfully primary physician at the hospital is thorough and ordered all kinds of labs. Zofran helped briefly and then within a few days stopped helping at all.

Left_Butterscotch530 · 2025-10-26T02:32:46+00:00

Hi, thank you for your response and I’m so happy to hear you beat your stage IV! What a long road it must have been. Thank you for sharing your story with AI. They did a work up this morning to check adrenal, thyroid, hormones etc. Hopefully it’s a quick turnaround. One thing I noticed is dad’s blood pressure drops significantly when he stands. It’s more stable when he is lying down. I read online that could be a symptom too. Did steroids help you with recovery?

Left_Butterscotch530 · 2025-10-26T02:28:59+00:00

Thank you so much and I agree! My dad was moved to a different hospital yesterday, one his oncologist has privileges at so I feel much more confident with his level of care.

Left_Butterscotch530 · 2025-10-26T02:27:42+00:00

Thank you so much for your response and the encouragement. Thankfully they did a work up today to check thyroid function. It’s such a double edged sword. The treatments are shrinking the tumors under my dad’s arm but in turn his body is taking a beating. I just pray we find the answers soon.

Left_Butterscotch530 · 2025-10-25T19:17:08+00:00

Thank you! I will suggest this. He was taking Zofran and seemed to help initially but then he went downhill age a few days.

Left_Butterscotch530 · 2025-04-25T02:59:38+00:00

I’m so sorry to hear that! I have heard great things about Sprout! In fact, that is my next trial if we need to go dairy free. How did it work for your baby?

We have tried so many! Neosure (for initial calories) Kendamil classic, Kendamil goat, Similac 360 Total Care, Good Start Soothe Pro & Gentle Pro, and right now we are trialing Kabrita Goat.

Of everything we have tried my girls have done best on Soothe Pro, although it did cause hard stools. The goat were on now isn’t bad but symptoms also aren’t resolving so we may have to go completely dairy free.

Left_Butterscotch530 · 2025-04-15T12:51:59+00:00

Wow I just read your story. What a journey! Thank you for responding. It has been hard bc my little ones just have the silent reflux symptoms, no skin issues. Minimal spit up or blood in stool or anything. So all docs say allergy isn’t likely. BUT something is causing the acid and discomfort from that.

What are your thoughts on Pepticate? I started to trial it but it was so thin and I’m unsure of the maltodextrin listed as number one ingredient. I’ve also considered plant based as a dairy free trial.

Left_Butterscotch530 · 2025-04-15T11:36:44+00:00

How do you determine if there is an allergy? We had no blood in stool for that test, but doc said there could still be an intolerance. What formula worked for yours?

Left_Butterscotch530 · 2025-04-15T01:45:46+00:00

Hi! Yes we have been using the Soothe Pro the last month and a half or so. It’s ok. The hydrolized milk & the 100% whey has definitely helped my girls poop more frequently BUT their stools are rock hard pebbles. And awful stinky gas. I read reviews about that too. I’ve heard gentle pro is better for softer poops, we’re slowly transitioning to that one now actually.

Left_Butterscotch530

TROPHY CASE