- May 16, 2022 at 10:40 pm
Long time since posting but I read this forum every night before sleeping.
Here is my story:
Feb 2019: Stage 2c ulcerated 5.5mm, BRAF neg, lymph nodes clear, observation after surgery
Feb 2020: mets to lungs, liver, brain
Feb 2020: Opdivo and Yervoy three times before high enzymes, ALT 759, AST 650
Apr 2020: predonine and MMF to control enzymes while in hospital for two months
Jan 2021: Opdivo only 240mg twice a month due to concern of high enzyme possibility
July 2021 to now opdivo 480mg monthly, no adverse effects, no side effects, bloodwork is normal, ALT 22, AST 24
Thankfully clear scans since April 2021.
I asked the doctor here in Japan how long will I be on opdivo, and he said “forever.” Please keep in mind, Japan is behind immunotheraphy compared to North America and elsewhere. An example of this is the 480mg dosage was only approved in Japan in Jan 2021.
My question is how long do most melanoma experts keep NED patients on opdivo?
Sincere regards and very thankful for everyone on this forum. Hello Bubbles and Ed!
- May 17, 2022 at 8:38 am
So glad that you have been NED for a year!!!!! That’s great! Most experts agree that patients with Stage III melanoma who are treated with immunotherapy be treated for a year – it is still a bit of a question with Stage IV peeps. In my phase 1 study of Nivolumab as a single agent, we (Stage IV patients) were treated for 2 1/2 years, then required to stop no matter our status. At the time, Dr. Weber advised that we were “probably treated too long” in that, a certain amount of the drug will work – or it won’t. To give more is to only court nasty side effects without benefit. However, the “certain” amount of drug remains a bit hazy. Still, there are these recent articles that may interest you: Response after discontinuation of anti-PD-1 in melanoma patients whether due to disease progression, side effects or choice
In all my reading of the literature – the general consensus for how long to treat Stage IV patients who are NED is roughly 18 months to 2 years. For whatever that’s worth –
I wish you my best. Celeste
ThinkingPositiveParticipantHi Adam, I reached NED after 10 months on pembro and my onc said I need to stay on for 18 months minimum to 24 months max. I jumped off at 18 months with next CT scan in July! So far, 4 months since last infusion and getting my energy back.
- May 17, 2022 at 7:38 pm
Wishing you well!
Hello Bubbles and Cindy,
- May 18, 2022 at 12:00 am
Thank you both for your replies. Bubbles thank you delivering again. That clip and the transcript you kindly provided is amazing in terms of OS for patients after immunotheraphy. I would like to show that to my Japanese onc!
Cindy, your input too was helpful.
- June 4, 2022 at 5:28 pm
Thanks for your input too. So, it seems that where all you people are located the standard is two years after clean scans. I imagine that will take at least two years for those guidlines to filter down to Japan as everything here seems to move slowly.
That booster shot of Opdivo sounds interesting. Is that common? I haven’t heard of any other MRF members doing that.
I see a highly regarded melanoma oncologist in Los Angeles. He was pretty clear that there no research basis for boosters. But I was very upset to leave the treatment that has served me well. The center runs many trials and this was not a trial. I am pretty sure the offer is to make me feel better emotionally. He dislikes stress. Immediately prior to my melanoma diagnosis I endured a harsh battle with an (unrelated) brain tumor and still struggle with a lot of unrelated-to-melanoma. Whatever. 🙂 I like the booster.
- June 5, 2022 at 1:44 am
- You must be logged in to reply to this topic.