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Rash on Opdivo alone

Forums General Melanoma Community Rash on Opdivo alone

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      Wondering has anyone had a rash with Opdivo alone. I will be getting my third 480mg dose next week and this week I developed a very sporadic rash. One area on my chest and the other on my external labia. It starts as a blister, then the blister grows and opens. The skin under the blister is very tender. Ironically it reminds me of a blistering sunburn. I am using hydrocortisone cream and an antihistamine. I am hoping this won’t interfere with continued infusions.
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          I might have had this before I started Opdivo but the Opdivo made it considerably worse.  They actually biopsied it and discovered it was lichenoid planus.  It started on my chest and then went to my arms.  Most did not form a blister just a raised red bump.  The largest ones itched like crazy but the hydrocortison cream took care of it (the itch not the rash).  The ones on my arm and neck took took the color out of my skin and made quarter size white marks.  The onco said this might be a good thing because it looks like my immune system was attacking my melanocytes.  This rash seemed to like virgin skin because it eventually  progressed to my thighs and a few on my shins.  I just finished my last treatment April 3rd (24 X 240mg every two weeks) and this rash got slightly worse.  I swear it's all stress and the Optivo just makes it worse.  My creatitine jumped during the last two treatments to 1.8 but is not back to 1.35.  I was check for infection but that came back negative.  My onco never blinked and eye with the rash or the creatitine – probaly thinking we take care of the cancer first.  Anyway, I think I went through 12 tubes of hydrocortisone in a year and it really wasn't that bad.  Oh yes, the fatigue – usually on the day of the infusion.  Good luck.

            Summer S.

              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 🙂 

              Summer S.

                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.  

                Cindy Lou

                  Hello All, I first will admit I have been a lurker on this forum for about 6 months now. This is the first time I have had any useful comment to make, but I have so much appreciated the forum for making me know I am not alone in the fight! I began Opdivo treatments Nov 2018. After the 4th one, a rash started to appear on my back. Small pimply bumps as well as larger red splotches. After each subsequent treatment, the rash spread more until it covered my arms, chest, abdomen, legs, mostly everywhere except my face & neck. The larger bumps would blister and I itched everywhere even my scalp. Dr said to use otc lotions, antihistamines, cortisone cream, etc. I had some relief from Sarna lotion & Curel Itch Defense lotion. Dr prescibed Doxycycline to prevent the blisters from becoming infected. The rash continued to multiply and the itching became so intense that I could not sleep at night. At that point, Dr prescribed a steroid dose pak(methlprednisolone) to take for 6 days and a topical cream (triamcinolone) to use on the worst spots. He also prescribed 1 mg Ativan to take at bedtime. I was very reluctant to take the steroids because I was afraid it would reduce the effectiveness of Opdivo but the Dr convinced me that it would have minimal effect. When taking the steroids, the rash diminished greatly and the itching all but stopped. The Ativan helped me to sleep instead of scratch. I didn't really see any effect the cream had. I have been off the steroids for only 4 days and some of the rash and itching have returned but it is still far better than before. Best wishes to you all, my friends.

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                      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


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