Update on Nodular Melanoma

[JCKI]

Hi everyone!

So my last scan was clear (yay!)

However I've had two boughts of hepatitis. And because of that my Onc has discontinued my Opdivo treatments. I was able to take 7 treatments.

But since I've been feeling like I was getting hepatitis again. My Onc is saying I'll probably need to be on a low dose of Prednisone for the rest of my life. Has anyone had this experience? Did you get a second opinion? If you're currently doing this, do you have any side effects? Negatives?

Thanks for the help! Hope you're all doing well in your journeys!

[VivaciousMo]

Hello! First of all, HUGE hurray for clear scans!! Celebrate it!! 7 treatments is fantastic and I hope it does the trick for you!

I did 4 opdivo treatments a couple years ago and then also had hepatitis (extremely elevated liver levels... can't remember the medical terms). I believe they put me on prednisone also. If I remember correctly I think I started on a relatively high daily dose (maybe 70 mg??) and then after a month or so reduced to 40, then 20, then 10, then 5. I was on them for maybe 2-3 months total. I'm sorry my memory is not better. But long story short, my liver levels went back to normal and I have not had to take steroids again since. I hope that might be an option for you as well.

The prednisone side effects I remember were yeast infections and an overgrowth of yeast in my mouth (on the tongue) which was definitely annoying, but in retrospect not that big of a deal.

I didn't get a second opinion at that time, but if you feel you want one, I don't think it's ever a bad idea!

[TT10]

Hi there,

I’ve had hepatitis from immunotherapy twice and was on a high dose of prednisone tapered off over the course of roughly 3-4 months.

While you’re on it, you should be getting frequent blood tests so your doctor can track your liver enzymes. The taper starts when liver function is normal, and continues until you can safely ween yourself off and still have a healthy liver.

Can you push your current doctor on why they think you would need it indefinitely? If your liver is healthy without it there’s no reason to keep it up. Prednisone was awful me - constant agitation, insomnia, moon face, and uncontrollable appetite. Long term, it can also lead to osteoporosis. I accept I could need it again as flare ups can happen any time after treatment, but my goal would always be to get off it as soon as possible.