Rash on Opdivo alone

Hello Steve, 

I hope you are doing well and opdivo is working well for you, 

here is what I think 

1. If your oncologist thinks that rash is not a major issue then probably you should not worry about it 

2. You may see a dermatologist for topical treatment to ease the rash if it is bothering you. Many people here have previously recommended to soak in oats and water. 

3. As for creatinine levels, I think they can be worrying and I think you may benefit from visiting a nephrologist

4. Creat. Levels are usually alarming, have you checked your other kidney functions? Especially electrolytes like calcium, potassium? I would double check all that is kidney related if I were you, just to be sure 🙂 

Personal experience: mom had a severe rash and similar creat. when she started Zelboraf. It turned out that rash kinda dried out her body off water causing kidney problems. Upon following nephrologist guidelines, and changing dose, things went back to normal. 

Of course this may not be the case for you, but digging a little deeper, or having a different opinion cannot hurt anyone. 

Good Luck 🙂 

Also, on a brighter note, opdivo is usually a great medicine and I hope you get a great chance with it , but it is always better to be extra safe

Rash is listed as a side effect for Opdivo.  I have a rash from Yervoy + an investigational checkpoint inhibitor and triamcinolone cream helps me.  I had it in my ear canals and it about made me crazy.  My onco recommended taking Zyrtec every day as well.  I had to use Ciprodex drops. After surgery I go on Opdivo.  

Ask you onco if triamcinolone is an option.  

Oh, my goodness.  I'm glad I am not alone, but I feel for all of you who have had this rash.  Like you, Cindy Lou, I have been a lurking presence on this forum, but am anxious to offer my experience in battling these side effects.

On December 19, 2018, I was diagnosed with Stage 1B nodular malignant melanoma of the nevoid subtype.  My tumor was 1.2 mm deep on my upper back.  I had a sentinel node biopsy on December 28, 2018 with results on January 9, 2019 that showed the melanoma had metastized in lymph nodes in both armpits.  I then became a Stage 3A.  

I started treatment with Nivolumab (Opdivo) on March 7, 2019.  Exactly one week later, on March 14, I began to experience symptoms:  woke up feeling funky and had a bit of a rash on my torso that I thought was a dermatitis returning that I had lived with for nearly a year caused by a skin reaction to a heart monitor patch that had been left on too long (I'm allergic to adhesive).  By the next day the Nivolumab rash began to spread as a bumpy red rash, but by the next evening it had turned into a raging rash spreading all over my body with welts and hives with the most intense itching I've experienced since several bouts with poison oak as a child.  It got worse over the next several days, on my scalp, in my ears, my vulva, my buttocks — everywhere but my face (thank goodness).  The oncologist's office initially told me to take Claritin by day and two Benadryl at night and use a Benadryl cream, a wholly inadequate response to this rash. By the third day I awoke with tremendous body pain, and when I called the oncologist about that symptom I was told to take Oxycodone, which I refused to do.  Oh, my, I thought I was losing my mind.  The rash was so bad I had to use ice packs to cool it down, the body pain so intense.  I finally went to a chiropractor for the body pain, and I visited with my regular dermatologist on March 25, the soonest I could get in b/c of my travel schedule.  He started me on 40mg of prednisone, 25mg of hydroxyzine (I ended up taking 100mg/day b/c the itching was so intense) and renewed my prescription for Ambien to help me sleep. He also prescribed triamcinolone cream and CeraVe Itch Relief Moisturizing Cream (non-steroidal).  He recommended putting both creams in the refrigerator to keep them cold, and what a difference that made on my hot, burning skin, especially at the witching hour at 3:30 am.  I saw my oncologist on April 4 for my second treatment, which we did not proceed with.  Instead, I received a potassium IV drip b/c my potassium level was extremely low.  He also increased the prednisone to 60mg per day with a gradual tapering.  I tapered very slowly b/c any time I would flare, I needed to go back to the previous dosage, so I just stayed on each dose a bit longer.  They also recommended Gabapentin to turn off the itch in the brain, but I also refused to take that as it has a history of suicidal ideation.  With a diagnosis of metastatic melanoma and the depression that came along with it, the last thing anyone needs is a drug that puts suicidal thoughts in your brain.

Upon the recommendation of a dermatologist at the University of Arizona that I recently met at a conference, I also began UVB phototherapy with my regular dermatologist on March 26.  I have now completed 9 treatments, with one more scheduled, but I'm thinking I may continue for a bit because the rash is only about 80% contained.  I do not know what has had the most effect — the prednisone, the lightbox therapy, the creams, or all three.  All I know is I wasn't going to use one without the other to find out b/c living with that rash was impossible.  

After consulting with my oncologist and other medical professionals, I have decided to discontinue with Nivolumab.  My oncologist has only see this type of reaction so suddenly and so severely in 1% of his patients.  That translated to about 5 patients, including me.  I asked what happed to the other 4.  Two of them restarted the Nivolumab after steroid treatment and their side effects were worse.  Two chose not to go forward with treatment.

No one seems to know if other PD-1 inhibitors will have the same response, so I am as yet undecided whether to try a different one.  I haven't found any research studies on the Internet yet, but I've not completed my search.  I'd be curious to know if others have had this reaction and whether you have then tried something else.  

I have recently learned that not only did my mother have melanoma (which I only became aware of after my diagnosis), my aunt (her sister) was recently diagnosed as well.  One of my aunt's daughters has also had a melanoma removed two years ago.  Armed with this new information, I will be asking my oncologist whether we should pursue genetic testing.  

My oncologist also recommended I see a naturopath to begin some integrative medicine therapy.  She went through my supplement list, tossed some and added others, so we'll see if those changes make a difference.  She also recommended I begin acupuncture treatments for the rash, my weakened left leg and the neuropathy in my left foot, all of which are side effects of the Nivolumab.  

Thank you for all your dedication to helping others by sharing your comments.  

Vicki Walker