New stage 3a trying to settle on decision on Opdivo/nivo vs observation

Nivo immunotherapy has little impact on my activities other than some fatigue for 2 or 3 days after each infusion.

I received my 61st infusion of Opdivo this afternoon.  I bicycled 25 miles yesterday afternoon and ran 10 kilometers this morning ( 5 K times: 27:33 and 26:24 ).  I can not run or bicycle as far or as fast for 2 or 3 days after immunotherapy.   I would have run the USATF 15 K in Tulsa on Saturday October 27, if it were not so soon after immunotherapy.   My August 2014 SLNB showed melanoma in 1 lymph node.   So, I had 14 more lymph nodes removed.  There was no cancer in those 14.  I skipped treatment, until melanoma was found in a rib in August 2015.

You are right.  Melanoma treatment is incredibly personal. You may never have to deal with melanoma ever again.  However, a positive node is worrisome and we know adjuvant treatment (both targeted and immunotherapy) WORKS!!!  

Here is a basic primer I put together that may help you:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

Here are a zillion reports on adjuvant treatment:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant+immunotherapy  

On a personal note:  I was diagnosed as Stage 3b in 2003 when I had a lesion on my back and ended up with a positive sentinel node.  I had a 10 and 12 year old.  Had never been a sun worshiper.  Had always eaten all the veggies and ran 3-4 times a week….FOR YEARS!!!!  There was no treatment other than interferon at the time.  Evidence that it worked then was nonexistent and since then we have learned that the impact it makes on melanoma survival is NONE.  So, I watched and waited.  Had another lesion to my left arm in 2007, but all nodes were negative.  Continued to watch and wait…as no new meds had come along.  In 2010, I ended up the melanoma to my brain, lung and tonsil.  After radiation to my brain, surgery to lung and tonsil….I was suddenly NED…just like you are now…except as a Stage IV patient.  There were still NO treatments FDA approved.  The things we take as routine now were not FDA approved until 2011 or later.  Luckily, I did get into a trial with Nivolumab (Opdivo) being administered to one arm of Stage IV patients with active disease and another with Stage IV patients who were NED.  I took nivo for 2 1/2 years.  I worked full time as an NP, continued to run, and yes…at times…felt like crap, had mouth ulcers, some wheezing, rashes.  But, I missed only 3 days of work.  Now….there are those who deal with much more significant side effects and cannot work and run in the way that I did.  It is very hard to predict.

Here is a basic report on what remains the most common side effects of nivo:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html  

However, the most important thing is – despite being a Stage IV patient in 2010  – I have had no evidence of melanoma since 2010!!!!  

Here is a report from the ratties in my study:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html  

Not sure I have helped you.  But, I wish you my best with whatever you decide.  Celeste

Hi Kelly. 

My 17 year old son was diagnosed Stage 3a in February….microscopic melanoma in his sentinel node…he also had a clear PETscan.  He began Nivo treatments in May biweekly and has completed 6 months of treatment. 

My son is doing well. Has had no real side effects, knock on wood.  He is living his life as normal as possible for a teenager with a history of melanoma.   He graduated high school and is a freshman in college. He is playing baseball in college and is able to keep up with the crazy practice schedule and his schoolwork which was something I was really concerned about.  He feels good, so aside from his scars, his biweekly treatments and frequent doctor visits you would not know  he is a melanoma patient. 

I think what is the hardest part for me with the treatment is not knowing if it is working….the only way to know is to find out it’s not working….and that’s the thought that scares me the most. My son has CT scans scheduled in 2 weeks. Scan anxiety is a real thing….It is all I think about. So I understand how this has been weighing on you for weeks…I’m not sure that ever goes away. It just becomes more “normal” …if that makes sense. 

When making the decision for adjuvant therapy, we went to Boston for a second opinion and the specialist we saw there also recommended the Nivo treatments. It’s definitely a lot to of information to take in. I have learned so much over the last 8 months about melanoma. And the one thing  I have learned is melanoma is sneaky and does not follow any rules….so.if there is something that could prevent it from returning we had to try. 

No one can make the decision for you…and everyone responds differently to treatment. But I can tell you I would not change my decision in having my son treated.   This is not something I ever thought I would be doing with my child but I am so thankful the option was there….

I hope this helps you. This forum is full of friends that have been through hell and back…you will get lots of advice!!!!  Good luck to you!!!!! 

Kelly 🙂 

You may be able to maintain your level of running, while receiving nivo immunotherapy.

I hold the age 67, age 68, age 74 and age 75 Minnesota 10 mile road race records.   I set the age 74 and age 75 records several days after receiving nivo immunotherapy for stage 4 melanoma.

Hi Kelly, good job on your first post!!! Last summer after ASCO in Chicago a series was made for Onclive on various topics in melanoma. This years main topic was adjuvant treatment options and there are several videos in the series. The link I am going to give you is the first one in the series and if you go down below the video you will see # 1 to 6 and if you click on # 5 you will get a list of adjuvant videos, all are pretty good and might be helpful for your decision making process!! On a personal note I have been on Nivo for 4 years and 9 months stage 4 lung and brain mets. The brain mets were zapped by cyberknife and the nivo has kept my lung mets under control and as of my last pet-scan they showed no uptake so pretty happy with the response. I am not sure if I can give the brain radiation or the nivo all the credit for my fatigue level but it can be a struggle some days to get a lot accomplished!!! Best Wishes!!!Ed https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/considerations-for-surgery-in-melanoma

I am one of the stage 3C patients that had major grade 3+ adverse events from nivo.  I developed colitis, diabetis, myocarditis, rhuematoid arthritis, and some lesser "itis's".  All A/E's have subsided but diabetis (minor) and artritis (horrible some days)  If I had it to do over, I would not hesitate to take nivo again.  However, my melanoma specialist gave me an 80% chance of recurrence.  If he told me I had less than a 25% chance I would probably not.  I am over one year NED now.  My best guess is I have had less than 10 days over the last year I regretted taking nivo.

I was diagnosis 2016 as stage 3A adjuvant treatment was not approved at the time and I did watch and wait. Fast forward a year and half and I got a nodule that ended up being melanoma. I started Nivo in May on this year and my last scans were clear. Stage 3 is a hard place to be because you never know for sure if it will come back.I have had 12 nivo treatment with minimal amount of side effects. Biggest side effect has been thyroid. I have two young children and work a full time job. Other than treatment days I have only missed one day of work. It is possible to live life while on treatment. Yes you may need an extra nap every once an awhile but its totally worth it. You must do what you think is best for you but know that many live full lives while in treament. Best of luck

Missy

Stage 3C here.  I've completed 12 of 24 treatments and have had minor side effects.  The biggest being a rash (Lichenoid interface dermatitis).  The immunotherapy actually created white blotches on my arm which I will most likely have to live with.  Fatigue has been minimal and much more noticeable early on in the treatments.   I had a WLE  12 years ago that had a depth of .9.  My melanoma reared it's ugly head 12 years later.  So yea, based on  my onc's advice and the fact that these little buggers can hide for years, I opted for the adjuvant treatment.  I'm still doing the every two weeks but lots of folks have switched to the monthly treatments.  I don't ever want to do this crap again so my thought was to suck it up for a year in hopes of being done forever.

I'm doing either nivo or combo nivo/ipi.  Used to say no side effects, but recently I've started to have a little wheezing and dry mouth.  Nothing too bad though. 

Kelly,

I was on Opdivo for 21 months.  To be honest I had a hard time noticing any difference while on the drug.  I may have had a little fatigue right after infusions but I could have also attributed that to the travel for my treatments.  Obviously there are risked involved but just wanted you to know it is possible to not have any adverse effects.  

I am a 3a, diagnosed in June.  I'm 41. I have had 4 treatments of Opdivo. The side effects I've experienced I've felt are minimal- tiredness and muscle/joint soreness. I originally felt itchiness after my first 2 treamtments but it's gotten better. And, I feel like it's all manageable. The only work I've missed is the days/times I've had appointments. I feel like I'm doing SOMETHING insteand of nothing which is why I'm glad I'm on this path. I lost my little sister 15 years ago to a completely different type of cancer-and she went though all sorts of chemo and surgery including amputation of her leg- and I have to keep telling myself that cancers are different. Treamenets are differerent.  But by doing immunotherapy I'm doing something- which, years ago, patients at stage 3a did not have the options too…I keep telling myself by doing treatment I'm improving my odds and empwering myself. Watching and waiting, while it's an option, for me, wasn't an option. That being said- trust your gut- trust your instinct.

One data point here for you to consider – my wife was diagnosed at stage 2 in December 2016 and had a WLE on her left calf.   Nodes were clear.   PET scan was clear.  Fast forward to July 2017 and I had to take her to the ER on a Saturday night with severe dizziness and vomiting.   A MRI showed two brain mets.   Brain surgery, gamma knife radiation, and now a year of Yervoy/Opdivo and she is NED with a year of immunotherapy left.   She has been very fortunate in her response to the treatments.

My suggestion would be to do the immunotherapy.   Her side effects have been very minor (some minor fatigue and a few joint aches).  You probably don't want to be in the position of having it recur at some point in the future and then wishing you had done the adjuvant therapy back when you had the chance.  

Hello. I am new to this group as well. I was diagnosed 3b with 2 nodes with microscopic cells. My oncologist gave me the option to wait and watch as well. I was really worried about side effects because I too am a working mother of 3 boys. The decision is tough but yet the whole situation is. But Looking at the hopeful outcome I have chosen to do the treatments once a month for a year. I start treatments next week. I just try to take it one day at a time and trust my gut as so many others have suggested. Reading all the posts on here gives me a sense of peace and for that I am grateful. Good luck with your decision! 

Kris