Opdivo 1st I fusion.

Hey Raco,

I was thinking of you as I too sat in the chair for my third infusion.  Sounds like you had symptoms very similar to mine.  It's not horrible, just annoying and definitely lets you know you had "something" that day.  

I also had my cologuard and yes, it was positive (meaning there is some abnormality ie polyps, blood, inflammation or worse cancer).  This was done before my third infusion and now onto a colonoscopy. 

The itching and fatigue have been most noticable side effect , but lately the GI change is becoming more prevalant.  Keep the faith and Im sure others who have been thru this and more will be able to enlighten us as to what else could be around the corner.  I think with this sort of stuff, there is the good bad and even ugly but we shall see.

Hang in there and all the best .. my 4th infusion is the same day as yours (unless my colonoscpy gets scheduled in there sometime) 

Dessie

Hi Robbie –

I'm sorry you had symptoms after your very first treatment. My husband had his first infusion at the melanoma center on April 6. He either got 480 mg of opdivo or 280 opdivo and a 1/3 dose of ipi. (He's in a study so doesn't know which, but on week #1 everyone gets drugs, no placebo.) He didn't have any symptoms other than possibly being a little tired, but maybe not even that. 

Prior to the study his oncologist had suggested he start taking a probiotic, and so is taking one recommended by a dietician I know. He (we) also started drinking kefir. We don't know if those warded off possible stomach side effects or not, but he was on a strong antibiotic dosage prior to the study (infected seroma) and for the first time when taking antibiotics, did not get diarrhea. Of course we don't know if it's coincidence or not, but increasing good gut bacteria is a good idea regardless. 

About 16 or patients are currently the study, some for quite a while, and apparently none have had severe side effects, the most common being an intchy rash or mild diarrhea. I asked our nurse navigator what over-the-counter meds to keep on hand (hydrocortisone cream, benedryl 25 mg if itching worse, Imodium for diarrhea). But they stressed that if side effects were more than quite mild, to immediately let them know so the doctor could help with managing them. The doctor also said that they tend to be cumulative, so fingers crossed for my husband – and you and everyone out there fighting the good fight. 

Beth

I have had 42 opdivo treatments. The side effects to me would be a good thing. Side effects means your immune system is reacting to the drug. I never had diariha but I also ate PB&J sandwich everyday and bananas and anything else to make me thick. I have had a rash since the second week which is at 22 months now. every now and then I will have 1 or 2 spots itch but not anything like others have had. I have had 5 or 6 side effects since the 3rd week but I also had 5 yervoy treatments also. I had 7 tumors in my lungs and have NED since august, took about 14 months to kill the melanoma. I am also on pain medication for knee issues so that may have helped with stomach issues also. Good luck.

Hi Robbie

I'm on Nivo #26 this week, every 2 weeks, had some reaction to the initial dual Ipi/Nivo but the mono Nivo has been easy, I'm also on a probiotic, Kiefer and Kombucha drinks, I firmly believe they help my gut, I'm also a minor eczema sufferer, it initially flared up, but has calmed down over the last 6 months, occasional fatigue for the first day or so and the only real effect is vitiligo, hands, arms and facial hair, including eye lashes and brows.

good luck

Tony

Hi Robbie, 

I think I shared my experience with you before.  I took Nivo for 2 1/2 years after brain and lung mets.  I had my last dose in 2013 and remain NED today.  In my experience and in the TONS of research I have done between 2003 and today….there is no magic potion for dealing with anti-PD-1.  There is NO data to support eating this or avoiding that will make your time on immuntherapy go better or with fewer side effects.  HOWEVER, if it works for you…by all means – DO IT!!!  My side effects are well documented on my blog if you or others are interested.

In regard to your question about this quote:  "until disease progression or unacceptable toxicity."   All that means is that ~ the drug will be given until you get more tumors or until you develop side effects.  That's all.  Now…things have progressed a bit from that phrase.  That was the terminology used when anti-PD-1 was first approved.  All it is in regard to is the duration of treatment.  So…back in the old days…aka 2011 til now…that's how anti-PD-1 was administered.  However, more and more…melanoma researchers and specialists are saying that patients don't need to take it 'forever'.  More and more, the data and researchers are leaning to standards that recommend therapy for 1-2 years and if you haven't progressed, you can stop.

Now…as to melanoma generally…  Sadly, we don't get to say we are in remission.  We don't get to say we are cured.  If we are lucky we can be categorized as NED (having 'no evidence of disease').  That is just the BE-atch that melanoma is.  Yes, unfortunately, we can avoid disease for years only to have it rear its ugly head again.  However, with immunotherapy, the good news is that responses have proven to be "durable"!!!  That is fancy talk…for lengthy…long term…lasting.  Hopefully, we will soon be able to use the word…permanent!!!

Hang in there.  You can do this.  You can all do this.  Celeste

I did 35 treatments and was NED for a year and started back on Opdivo in December of 2017. So, I am somewhere over 50 total treatments at this time. Fatigue was my biggest impact. Exercise and working through the fatigue seemed to be my coping method. That and my 90 pound Labradoodle takes me for at least 3 walks a day… As far as the itching I use CeraVe "itch relief moisturizing lotion". This seems to help the most. I have tried store brand equivalents, but they just don't seem to be as effective.

Good luck. Find your coping mechnisiums and try others suggestions. If there is something you truly love to do that "zones" you out – DO IT! I have had a real hard time with fatigue this week. So, I had my neighbor bring over his mountain bike and spent the morning tearing it down to give it a complete tune up. That's how I shut down the fatigue.