Side effects of Yervoy

Following and wanted to say good luck with your treatment. Pls update us regularly.

The immunotherapy drugs all have similar side effects. Ipi tends to give more people the bad side effects compared with the other drugs like Nivo (Opdivo) and Pembro (Keytruda). Sounds like you'll be doing the Ipi/Nivo combo. One thing to remember: not everyone gets a bunch of side effects. Fatigue is something almost everyone experiences to some degree on these drugs. The side effects that you should be aware of in order to let your oncologist know as soon as you have symptoms of them are things like Colitis (persistant diarrhea, blood in stools) and Hormone gland problems that can include thyroid, pituitary, adrenal glands (persistant bad headache, mood changes, dizziness). Your oncologist should go over all of the side effects with you and let you know of the specific symptoms you should be aware of that they will need to know about as soon as you have them.. the sooner your oncologist knows what's going on, the better chance of stopping something from getting too serious. 

I did Ipi both for adjuvant treatment and then I did Ipi with the combo, so I have had in total 10 Ipi doses. I never had a bad side effect, the worst I ever felt was after my last Ipi dose I had a 2 week fever and high liver enzymes. But it went away and my liver went back to normal. I also deal with joint pain/inflammation and my eczema flares up.. something I had before treatment. Skin rashes can also happen on Ipi, can range from mild itching which a good lotion or topical steroid ointment can help with to grade 3 and 4 rash where more serious treatment of the rash needs to take place. Another thing you should know and if you start to see a rash or get really itchy, let your oncologist know.

It is administered through IV infusion, Ipi takes 90 minutes. The whole infusion process takes quite a bit longer. If you are doing the Ipi/Nivo combo, then you'll also get Nivo at the same infusion, separately, and that takes 60 minutes.

Hoping it all goes smoothly for you and takes care of the mel once and for all.

Hi Wally, 

Sorry for all you have been dealing with.  To answer you properly it makes a real difference to know what your docs are planning to combine ipi with.  These days they are many combination treatment options.

Here's a basic break down:  

Ipilimumab/Yervoy is an anti-CTLA4 product in the category of immunotherapy.  Immunotherapy does not attack the tumor directly the way old school chemo does (as a poison that kills the bad cells and often, unfortunately, along with some good ones).  Rather, immunotherapy causes your immune cells to be fired up and take their blinders off so that they can "see" and "attack" the melanoma…getting rid of it!!!  As such, it makes sense that side effects are related to the immune system being released.  You know those adds about all the therapies that calm down the immune system to help folks with arthritis, asthma, psoriasis, colitis??  Well, immunotherapy does the opposite and therefore the most common side effects are: fatigue, rash, colittis (often presents as diarrhea), pneumonitis (inflammation in the lungs that often presents as wheezing), arthralgias (joint pain), etc.  Some folks end up having certain glands stop working leading to diabetes or hypothyroidism.  There are plenty of other strange, not so common side effects as well.  The good news is that many folks develop very few or mild side effects.  The other good news is that since ratties were taking this drug in trials back in 2009/2010, we have learned a great deal about how to recognize side effects early and treat them (with stopping the drug and giving medicines like prednisone if needed) making treatments much less debilitating for most patients.  The drug is given in a vein. Ipi has about a 15% response rate when given alone.

Anti-PD1 (Nivolumab/Opdivo or Pembrolizumab/Keytruda) are also immunotherapy products.  They work as pretty much as ipi does and their side effect profile is about the same except most of the time much milder.  Alone, they have about a 40% response rate.  They are also given in a vein…frequency varies, but often every 2-3 weeks…depending on the patient, the doctor, and the protocol or trial that may be being followed.

Currently, the best response rate going is when ipi is combined with nivo.  Side effects are usually due to ipi if they occur and as such sometimes if patients can't tolerate the side effects, docs will stop the ipi and just give the nivo.  Response rates are around 50% or higher.

Here is a post that covers an update on a group of ratties who first took the combo: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-checkmate-067-ipinivo-combo.html  

So…I'm guessing that is what your treatment plan will be….however, if ipi is going to be combined with something else….let the board know and we might can give pertinent info.  I wish you well.  Celeste

I just finished my 4th combo on Thursday.  Minimal side effects.  I think or it seems I am a slow responder.  My tumors in my lymph nodes did swell or grow after my 2nd dose right before my 3rd which was put off for a week cause of vacation.  But after the 3rd dose they seem to shrink after about 7 days..  I was in so much pain in my abdomen, pelvic area I was in pain every time I lift my right foot.  I do have intransit lesions that have not shrank but hoping they will before my Opdivo only infusion in 3 weeks.   Doc has order scans before next part of treatment.

I did get my 1st Explanation of Benefit and the Yervoy is crazy expensive and the insurance has not paid that part as of yet (1/15/2017), waiting on more detail information from cancer center.  $93,000.00 us$ for total of one treatment.