stevek1959x

I had 26 treatments of Nivolumab every two weeks. Approximately 2 months after my last treatment I developed some of the same symptoms you mentioned (excluding weight loss). I had my glucose checked and I was close to 500. I had it checked a month earlier and it was in the normal range. I also developed fairly extensive vitiligo about the same time. The good news was that immunotherapy really fired up my immune system. I was diagnosed in 2018 and had 31 lymph nodes removed of which 8 had melanoma. I remain NED today. Unfortunately I am still diabetic and require insulin daily. Yep, traded cancer for diabetes. I’ve heard this is fairly rare (<1%) and some folks their pancreas actually recovers. Unfortunately my didn’t.

I had 12 months of Nivo which ended in April 2019. November 2019 I developed type 2 diabetes which was immunotherapy induced. I’ve had extensive vitiligo and some flakey kidney and bilirubin counts which have recovered once immunotherapy stopped. Add to the mix slightly lower RBC and lupus. I’ve managed my diabetes with the highest A1C being 7.5 and recent count is 7.1 (I’m on insulin and metaformin). Fast forward to February 2022. I had several sharp pain in my left foot. Followed by an episode where my leg went completely numb (like hitting your funny bone). Still some numbness on the outer leg but hardly noticeable)0. My GP did not think it was diabetes related since I’ve only been diabetic for 2.5 years and never had any glucose problems. He ordered an EMG to diagnose the nerve problem. The neurologist indicated in the report that it was early stage diabetic neuropathy. Haven’t heard from my GP yet. Usually diabetic neuropathy is 10 – 20 years after being diagnosed and folks that don’t manage their blood sugar levels. I get needle like pains especially at night. Exercise seems to help considerably. My GP had hinted that it could be immunotherapy but doesn’t have the background/knowledge to make that diagnosis. Your question about whether this is immunotherapy induced is spot on. I’ve been NED since June, 2018 after a complete lymph node dissection.

After my Nivo treatment ended (12 months), I was fighting a rash (lichen planus). Seems wherever the blister like rash formed, I developed a white circle after the rash healed. I noticed the white blotches were starting to connect (2 months after treatment ended). The back of my hands, forearms from just above the elbow to the wrist, neck is completely white, chest front and back are covered with small white blotches, and yes a few patches of grey hair. I notice that my arm air is completely silver. I was tested for lupus and my doctor started me on Hydroxychloroquine and prednisone. The rash stopped but the end result was some pretty major vitiligo. I was doing light treatments for the rash and vitiligo but had to stop (broke my hip – another story). I wear sunscreen faithfully but my normal skin still tans especially on my hands. Yet another new norm.

I’ve got two that showed up on my first scan almost two years ago. My oncologist wasn’t worried as these were very small but said we would watch them. It always make me worry when they say to “watch” something. Anyway, they have not changed and are stable. My wife also had some show up prior to her stem cell transplant. The Mayo was somewhat more concerned but after another scan plus some other tests, the proceeded with the transplant. These also remained stable.

Tom, my creatitine level shot up to 1.8 during my last month of Opdivo treatments. My Opdivo dosage was every two weeks for a year so labs were drawn every two weeks. It stayed at that level for 4 weeks at which time my Opdivo treatments were finished. Two weeks after that my level dropped to 1.4 and approximately 2 months after finishing treatments, the creatitine level returned to normal. I certainly drank my share of water during that period.

Hey Jennifer, most likely not related but I’ll throw it out anyway. Four months after I completed one year of Nivo, I woke up one morning and my eyes were blurry and I could not focus. My derm had just prescribed a new med along with a low dose of prednisone to help me with a rash I’ve had. Thinking it was something to do with the new med, I called y derm immediately. He said the med would not cause this and I should make an appointment with my GP. My GP checked my glucose and it was in the 500 range. Diagnosis – Type 2 Diabetes as a result of immunotherapy (this was confirmed by my onc as well). So yet another adverse affect of immunotherapy. FYI – I was healthy, good diet, not overweight and had no history of diabetes in my family.

I had a PET/CT scan at 3 months and just a CT scan at 6 months following the completion of nivolumab. My next CT is scheduled at the 3 month interval. Sometimes insurance companies control the frequency/type of scan. I’m currently on medicare with a supplement.

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.

LKB – In July 2019, I had normal glucose levels during my annual physical(much like every prior year). In September, 2019 my vision when flakey and I was constantly thirsty. My derm suggested I see my GP. He did a glucose check and it was slightly over 500. In a period of months I became diabetic. FYI – never had a weight or diet problem. Walking seems to help and it keeps my glucose levels in check.

Ed – Interesting. I was having headaches in late January. Didn’t think much about it and thought it was probably related to sitting at the computer too much. The headaches did not go away. I called my onco and he ordered a brain MRI. It was a clear. My CT scan was scheduled for March and I was really sweating this one as this is the first one that I went a full year between scans. I switched pillows and once I got the CT results (NED), my headaches went away. Stress? There just doesn’t seem to be much understanding of immunotherapy in the medical community. My GP, derm, cardiologist are all great at managing the symptoms but talk around immunotherapy other then “well you did have immunotherapy”. My onco is focused in on the cancer and achieving NED. So I guess this is the price you pay for being NED – which is OK by me.

It spread slow at firsts (arms and back of hands). When it started on the neck, it went extremely fast. From the back of my hair line to the shoulders and around the front of the next is completely white. The last place it developed was the sides of my face (upper cheek bone). I started the UVB treatments within a week after it progressed to my face and that was the last progression I had (6 months ago).
Other then patchy looking skin, my main complaint is you need to wear sun screen faithfully. Five minutes of sun exposure get me burnt.

The final month of my treatment (total 12 months) my creatitine level increased. It took about another two months before that returned to normal. Extensive vitiligo set in 2 – 3 months after treatment. If that wasn’t enough, type 2 diabetes set in 5 months after treatment (currently on insulin) which my onco believes is immunotherapy related since I’m not overweight and no history in my family. I had my glucose checked in August which was normal and bam, 30 days later it was at 500 (yep 500!). Oh yea, and the rash I had for a year. Yes, these are bumps along the way but it is better than the alternative. What is interesting is how fast these affects pop up. Some resolve others let you know you’ve had immunotherapy.

Hey Cindy Lou, I seem to have cornered the market on rashes. Initially diagnosed with lichen planus before I started Nivo, the Nivo caused a drug explosion which made the lichen planus even worse. My dermatologist put me on 10 mg prednisone and when I told my oncologist, he had a fit and we had to stop. As an FYI, folks commented on this board that low doses of steroids do not alter the affect of immunotherapy – my onco thought otherwise. I finished my one year of Nivo on April 3rd and the rashed continued. We tried UVB lightbox treatments for my vitiligo and lichen planus and it did not really do much. My onco ruled on any immuno suppressants. In july my rash got even worse and my dermatologist did another round of punch biopsies. The lichen planus was confirmed again but this time there was some indication that this could be lichen planus with lupus overlap. All of this makes my vitiligo even worse. Well the lupus came back negative. Meanwhile, my dermatologist put me on 30 mg of prednisone along with 400 mg of plaquenil (for lupus and can work for lichen planus). My onco agreed with the plan. After 1 day my itching stopped and now after two weeks, the rash(s) are completely gone. This after fighting it for 18 months. I’ll be tapering off the prednisone and most likely stay on the plaquenil. Hopefully I can keep this in check. Meanwhile I continue the UVB lightbox treatments for vitiligo. Don’t know if you had any biopsies on the rash but at least it can help in identifying what you rash is.

Much like you, I just completed Nivo and had my last PET which was negative along with the previous two (Stage 3C). The next scan in October will be a CT – Torso only.

Ah yes, vitiligo. I had two treatments of Nivo left out of 24 and the vitiligo started to show. I’m sure it was there earlier but just coming out of Minnesota’s winter, I had not had much exposure to sun. All of a sudden blotcihes started to show on the back of my hand. I started to where a short sleeve shirt and blotches appeared on my arms as well. Most recently, I was outside and used sunscreen on my arms and hands. I was out in the sun for about two hours and my neck started to burn. Holy crap, my neck was completely red with a little brown below my collar line. vitiligo had turned my neck completely white and it proceeded to wipe out most of the color on the front of my neck. I also have a few spots on the side of my face. So yea, I learned the hard way – use sun screen liberally. I also have had a rash (lichen planus) which just loves the vitiligo skin. I used a cream to stop some of the itching but now if I scrape my arm, it peels the skin back(thin skin). My onco said the only way to stop the vitiligo was with an Immunosuppressant and said there is no way he was approving that. My dermatologist decided to recommend UVB light therapy for both the vitiligo and lichen planus. and my onco was ok with that. I’ve had two treatments and will check in with the dermatologist in 6 week (3/week).. It’s one heck of a time commitment and if it seems to be helping after the six week trial, people usually go for at least 6 months to 1 year. The vitiligo is a pain and it would not looks so bad if I just completely avoided the sun. I’m really hoping this treatment takes care of the lichen planus. I guess considering the alternative, it’s certainly manageable.

Steve

I just completed my 24th and final treatment on April 3rd. I also had no side effects other than a rash (lichen planus). That was starting to tame down but has picked up since the end of my treatments. I also just recently developed vitiligo on the back of my hands. The skin on my arms is blotchy wtih some pigmentation issues especially where the small lichen planus pimples were. In the last two weeks I also have developed dry, crusty skin on my knuckles and sides of some of my fingers. I’m constantly putting lotion on to keep this in check. It takes about 12 weeks before the Opdivo is out of your system but I suspect your immune system stays revved up. So yea, Opdivo, the gift that keeps giving – and that might be a good thing!