Yervoy Experience

I just had my 3rd Yervoy/Opdiva yesterday.  I have the every 4 weeks x4.  So far side effects are fatique, rash, thryoid.  Read all the useful posts about thyroid and rash.  Others have really helped me.Vervoy alone? No Opdivo?  Also liverAST/ALT numbers rising.  But feeling blessed not as bad as I have read others going thru. 

it seems most folks start to get side effects after the 3rd dose…at least what i have seen over the years…

Hi Holly,

My husband was Stage IV in 2010 and started Yervoy 10mg/kg and GMCSF Clinical Trial in March 2011.  He became NED in July 2012 and has remained that way ever since.  His Yervoy was given 3 weeks x 4 and then he went into maintenance doses of 1 every 12 weeks.  The GMCSF was self injections of once a day for 14 days then 7 days off and start again for the whole time he was on the trial.  He took himself out of the trial in Dec. 2013.

He had fatigue, muscle aches, eyebrows turned white (and have remained that color), lost pigmentation in the head area down to the collar bone.  He no longer produces cortisol so he has remained on first 7.5 mg prednisone daily, then down to five and finally has stopped it altogether.  With the lack of cortisol his adrenal gland has trouble regulating his temperature and did run fevers off and on but at least he is cancer free.  

If you would like to read more about his journey you can read it on his profile.

Judy (loving wife of Gene Stage IV and now NED for 5 years)

My itching and fatigue has started to subside.  Today, I am going in for my 3rd maintenance dose of opdivo.  I successfully completed 4 doses of ipi/nivo as a stage IV with incredible results! The itching started with the first ipi/nivo combo in April, but was tolerable, only on my lower back, right rib cage, and lower left calf.  Mine never got so bad I needed to take a benadryl, but I have read that it has helped others.  I have continued to work full time, though the afternoons have me yawning quite a bit!  Good luck, fight hard, and never give up!

Todd

Hi Holly,

I had only fatigue and mild fever after first combo Yervoy/Opdivo infusion.  After the second I had fatigue and mild fever but then had severe fever and nausea and AST/ALT levels went quite high and had to stop due to hepatitis.  Once controlled they put me back on Nivo.  I did have good results from only two treatments – over twenty tumors to only two.  Good wishes to you for minimal side effects and maximum results.

Jennifer

My experience with Yervoy was in many ways similar to what others have written. I did however, want to add something. I've asked my oncology team and even Bristol Myers (Yervoy With You program) and couldn't get an answer to this question: does Yervoy change the immune system permanently or temporarily? 

I asked this because I experienced some side effects and wondered if they would be permanent (e.g. would my immune system permanently attack my pituitary or would that stop – I know the pituitary function won't come back, but I'm hoping that my immune system stops attacking it at some point).

Well, I couldn't get an official answer but in my individual case it feels like the changes from Yervoy/Ipi were temporary and not permanent. I am feeling like the Yervoy effects are wearing off and I'm feeling normal again. My last infusion was April 20th so it has been just over 3 months now. I'm very excited that the Ipi headache, rash, and just a feeling of wanting to rest all the time have now diminished and nearly gone away. Only now can I look back and say "I'm glad that I did Yervoy"

With me, the rash and itching started after the first infusion. They put me on prednisone and that controlled it. I had no other side effects until I started experiencing a little stomach upset after the third infusion. I finished the 4th infusion in January 2015. About three weeks later I got really sick: nausea, intense abdominal pain, lots of gas, and cramping. At first the oncologist thought it was from being on prednisone for so long, but I had already started weaning the dose down. I was never diagnosed with colitis, but what I had felt very much like it. I couldn't eat much other than dry toast, Minute rice, and Jello for about three weeks. Then things gradually got better.

I hope you don't have an experience like that!

-Bill

I have finished four doses of Yervoy, and had some fatigue and itching after the second and third doses.  After my 4th dose I became very fatigued, actually nodding off in meetings at work.  I also had some tingling in my fingertips and headaches.  I went to the doctor immediately to find out that that my pituitary gland stopped working and am now on thyroid and steroid medications for the rest of my life.  Such a catch 22.  I now wonder what the long-term effects on my body will be from these medications. I just started them two weeks ago and feel much better.

Great, you started the itch, great news as this likely means your immune system is reacting to the drug. I got the rash the second week and still have it 16 months later but it never itched. I was only on 3mg OF Yervoy but I think most people on 10 mg experience worse side effects, probably what you didn't want to hear. But at 13 months (June) I went into remission and had another neck to pelvis scan last friday and Dr. just called to tell me I am NED! I have had at least 6 side effects since about my 3rd combo but always looked at it as a sign my immune system was kicking some melanoma ass.