Opdivo wrap up!

Posted By
8/6/2018 12:09pm
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Replies: 3

This is mostly just informative for anyone on or considering starting Opdivo.  

So after being NED for 1 year from stage 3B with 1 month radiation.  I am finishing up my Opdivo treatment this week.  I was getting an infusion every other week for 10 months and opted to switch to once a month for the last 2 treatments as it has recently become available.  I have noticed no new side effects from the change of treatment times.  The only side effects that I did encounter durring my journey were pimples here and there, a small rash after my first infusion, headaches (pretty strong ones, especially right when waking up) that were cured with tylonol and moderate tiredness in spirts.  I really did not change my diet that much as that much as im not a veggie kind of guy.  I did abide by the very limited use of alcohol and not smoking as I like a cigar every once in a while.  It will take 3 months from this point for the medication to be out of my system for the most part, then hopefully I can start to get my energy back.  I have to say that vs. just sitting and waiting this was a great option for me.  Everyone is different but I feel that it has increased my hope factor which in turn helped to cure me.  That, support of friends and family and faith have gotten me to the point that I am at.  Loving life and trying to enjoy every moment.


Threefitty - (8/6/2018 - 2:01pm)

This is very similar to my experience, 8/17 - 7/18 after a 3b diagnosis. Change "pimples" to itchy, patchy rashes and take away the headaches, but add a bit of post treatment day fatigue, and that is about it. 

Did need to go on Synthorid at 150 mg/day.

Topical treatment solved the itch. Had no radiation.

Agreed on "glad to be doing something". 

6 weeks since last infusion I still get itchiness. Good to have a time frame on that passing.

The hardest thing now is simply explaining what "adjuvant treatment in a Stage 3 melanoma setting"  means to outsiders and that you'll never know if it worked until you know that it didn't (and no its not remission). I pretty much say "now I can win one of 2 coin flips, instead of having only one coin flip". That may not be statistically correct, but most people get the point.

I honestly don't understand presenting a balanced decision making framework of "do this or wait and watch" unless you are 75+ y/o. It's officially a no brainer, right?

rpm773 - (8/10/2018 - 12:47pm)

Ok, so I'm at the beginning of this road.  Stage IIIc diagnosis starting in my leg, but the excision surgery was successful and only 1 or 2 SLNs showed disease (.35mm tumor).  The ensuing PET scan showed no additional disease

Last month my oncologist gave me the option doing immunotherapy, which will be Opdivo. I'm meeting with her Monday and plan to go ahead with it.

I was ecstatic with the oncologist saying, last month, that I was "essentially cured but with reservations", but have since sunk back into pessimism.  I'm glad you were able to take some emotional value from the treatments for minimal cost (in the form of side effects), hopefully I can do the same

Stay well!

Pwest55 - (10/13/2018 - 11:10am)

I was diagnosed 2B back in July. It was a nodular melanoma that was 9 mm thick and had a very high (10-12) mitotic rate. I wanted to be proactive sp zi joined a clinical trial with opdivo. After one treatment I had fatigue and little appetite. Blood tests before second infusion should thyroiditis. My choice was permanent thyroid damage or dropping out of the trial. I dropped out. Now awaiting tests to see if my thyroid recovers.