Yervoy Treatment Help

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5/29/2014 6:16pm
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Replies: 20

I will be starting Yervoy treatment in a few weeks..Can anyone tell me how the side effect are?.. I will be doing 1 treatment every 3 weeks..

RJoeyB - (5/29/2014 - 8:33pm)

Side effects can vary significantly from patient to patient. Certainly familiarize yourself with the literature your doctor should providing to you that is also available on the Yervoy website. Rather than tell you every possible side effect, I'll tell you about my experience and let others chime in with their own so you can get an idea of what you might possibly encounter. The side effects for me were relatively mild — the major one being fatigue, especially the day of the infusion and the day after, but staying with me throughout treatment and gradually increasing with each dose. This wasn't complete exhaustion, just a noticeable uptick in fatigue. Fatigue is such a tricky thing, it can be a drug side effect, it can be emotional, and the truth is probably somewhere in-between, and for me, getting better exercise improved symptoms of fatigue. The other thing for me was a rash on my chest and torso, again, not major and it subsided pretty quickly. 

The infusions themselves were painless and uneventful. I know sometimes for someone receiving their first infusion of any kind, there can be apprehension about what it will feel like or if there should be anything to expect right away. If I recall correctly, each one took about 90 minutes for the actual IV drip. If the infusion room is efficient and running on schedule, figure about two hours from walking in the door until leaving. Bring something to read or watch, something to drink, snacks, etc.

 

Ginger8888 - (5/29/2014 - 8:53pm)

Thank you so much for getting back to me..I finished the 30 day high dose of interferon about a month ago with ease but it didn't get all the melanoma..I had a lymph node test positive..Do they put another picc line in...I sure hope not, i have a pool and still would like to enjoy my late evening swims? Anything special i should eat to help with the process?

RJoeyB - (5/29/2014 - 9:26pm)

No PICC line, although I suppose it's possible there are reasons they could choose to use one if IVs are a problem for you or if you're receiving other medications regularly.  But in general, no.  As far as foods, there was nothing specific; I tended to stick to a lighter, more bland diet in case the Yervoy caused any GI issues, but it wasn't a requirement, just how I chose to do it.

 

Ginger8888 - (5/29/2014 - 10:13pm)

Thank goodness..I am a hard stick but i believe with it only being once every three weeks it'll be fine..No other meds except Thyroid medication i've been taking for 15 years..Thanks so much..

Marianne quinn - (5/29/2014 - 11:09pm)

My husband was in the10 mg trial of ipi. He had and still has gastric issues. Milk, ice cream, Thai food, spicey food would set off diarrhea. Yogurt was beneficial and he uses soy milk. Avoid nuts and popcorn. It is like irritable bowel syndrome. Use lotion for the rash and take Benadryl at night. Protect your skin as any minor irritation sets off itching. The side effects are manageable. Have immodium on hand if you get diarrhea and take it as directed and don't wait too long to take it. Good luck

Ginger8888 - (5/29/2014 - 11:26pm)

Thank you for the reply, i'm hoping i can handle this as well as did the interferon..Is the rash bad ? Would love to be able to get in my pool in the evenings..I already have diverticulitis so there are many foods i can't eat any way..This forum has helped me out a lot and i appreciate everyones help..

Gene_S - (5/30/2014 - 12:13pm)

Hi Ginger,

My husband was on the high dose of Ipi (Yervoy) of 10 mg/kg.  He did fine with the main part being the rash but he doesn't like taking other meds so he never took anything for it.  He also had fatigue and his body quit produceing prednisone so he must take 7.5 mg a day to replace it.  He started in March 2011 and just went off of the trial in December 2013.  He received the initial infusion every 3 weeks for the first 4 and then went into maintenance of 1 infuson every 12 weeks.

The infusion of the drug takes 90 minutes with vitals taken every half hour and then he had to stay for an hour afterward for monitoring even though he never had any side effects show up during infusion.  The site he had his has pop, water, coffee, juice, crackers, and cookies that they gave to us for no charge.  If we were going to be there during a meal we packed a sandwich or salad.  There was a TV in each room and a DVD player or we took our own books to read or a DVD if we wanted to watch a movie.  The time we arrived and the time before the drug was started depended on how quickly the pharmacy mixed up the medicine.  So we were usually there at least 3 hours.

He became NED on October of 2012 so Yervoy helped him reach this.  When he started he had lesion in the lung, liver, and one on the scalp unresectable as it was against the cervical spine at C1-C2 area plus 3 small sub-q's in the area where he had a previous surgery for melanoma.  We took pictures with a nickel so you could compare the size of the sub-q's and we kept this up every 3 weeks as you could watch them getting smaller.  When they got really small we put a smiley sticker on the nickel and kept the picture taking up until they had totally disappeared.

If you wanted to read more about his journey during the Yervoy or before you can check out his profile.

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

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Ginger8888 - (5/30/2014 - 2:08pm)

Thank you Judy glad to hear of your husbands NED,,I am praying i will be able to hear those words myself..

Mat - (5/30/2014 - 1:40pm)

My two cents--ask your doctor to prescribe Prednisone (e.g., 20 mg tablets) upfront and carry it with you (particularly if you travel).  Agree with your doctor that you won't take it unless you first speak with him/her re: [fill in the side effect].  I'll speak to colitis--the minute you see that Immodium is not keeping your bowels under control, call your doctor immediately.  In my case, this happened over a weekend.  I was able to speak with my doctor and start Prednisone immediately because I had it with me.  This step (with others) helped me avoid hospitalization.

Ginger8888 - (5/30/2014 - 2:04pm)

Thank  you so much, i will do that..

BrianP - (5/30/2014 - 10:11pm)

Ginger,

Like you did with the interferon, drinking a lot of water can't hurt during the infusions.  I'll piggyback on a couple things Joey mentioned.  It was also hard for me to quantify the fatigue.  Some people have it really bad but for me I think somedays I was just a little more worn out at the end of the day than I normally would have been.  Then again that could have been the work of my 3 and 5 year olds and not the Ipi.  I think reading on the side effects is another good piece of advice.  I think the listed side effects are written by lawyers and not doctors so don't get too alarmed when you read all of them but you do want to be familiar with them.  I kinda got burned a little by not being as informed as I could have been.  After my 3rd infusion I started to develop a constant mild sinus like headache.  It gradually spread to my whole head and by the time my 4th infusion came around was very uncomfortable.  My 4th infusion was canceled and I was immediately put on 60mg on prednisone which removed the pain in a few hours.  What I was experiencing was a side effect called hypophysitis, an autoimmune reaction which causes the pituitary gland to swell.  If you recognize and treat this side effect early there is a good chance you won't have any permanent side effects but if not recognized and treated soon enough, which appears to have happened in my case, you may have permanent damage to your pituitary gland.  There's a few of us on this forum that have experienced this side effect and are now taking prednisone daily.  This is the reason for Mat's suggestion to see if your doctor will prescribe you the 20mg pills of prednisone which I think is a great idea.  The doctors should also caution you about colitis and diarhea.  My doctors advice was if I had a case of diarhea lasting more than about 12 hours he wanted to know about it.  This side effect, like the hypophysitis, if caught early and treated is not that bad but if left untreated can really become serious.  Good luck to you Ginger.

Brian

Ginger8888 - (5/30/2014 - 11:09pm)

Thank you for the information i put the suggestions in my phone so i don't forget..I have a teaching class scheduled next week to learn about the side effects..My dr has mentioned the diarhea and coiltis..Again thank you..

Marianne quinn - (5/31/2014 - 12:51am)

The rash is bothersome but tolerable. My husband swims. Be sure to put lotion on afterwards and use Benadryl at night. Sometimes he wakes up scratching  one leg or arm. Be sure to shower if exposed to grass, dust, etc try not to scratch. Rash was the first side effect he had. The diarrhea came after the 2nd infusion but settled down some after he figured out what triggered it. Good luck

Ginger8888 - (5/31/2014 - 8:02am)

Thank you, i was hoping i could get in the pool if i get that rash..Any certain lotion i should use? Has your husband finished his treatments yet and if so are they working?

democat - (5/31/2014 - 9:49pm)

I haven't done Yervoy, but for itchy rashes, nothing beats Sarna. I always bring it with me. It's also great if you get hot or run a fever.

 

Roxanne

Roxanne

Stage IIIa/IIIb

since 1/2013

Ginger8888 - (6/1/2014 - 9:20am)

Thank you

Anonymous - (6/1/2014 - 2:28pm)

As you can see, reactions to ipi vary across the spectrum.  After only 2 infusions of 3 mg ipi, I had an irAE, immune related adverse event. This included Inflammatory ulcerated colitis, adrenal insufficiency, and hypophysitis. Treatment was stopped and never resumed.  My reaction was extreme.  My immune system ran amuck.  I was hospitalized for 3 1/2 weeks.  While in hospital, I was given 2 infusions of infleximab to address the irAE.  This was 6 months ago.  My ipi induced colitis seems to have subsided.  I'm still in the trial even though I will not receive the remaining 2 treatment or the 4 maintenance infusions.  I have been NED since my surgery last June.  I'm taking 5 mg prednisone and 0.1 mg Florinef to to deal with my "adrenal problems."  My endocrinologist is planning  take me off those 2 soon to see if I can manage without them.  The best advice I can give is if severe (especially bleeding) diarrhea occurs, call your oncologist and go to the ER ASAP.  Bring any information about your treatment on Yervoy with you and insist on a liquid diet (no red colored food!) in case a colonoscopy is indicated.  The silver lining to reactions to ipi means your immune system has been stimulated.  Good luck!

Ginger8888 - (6/1/2014 - 5:20pm)

Thank you for the input..I'm a little nervous but if this is one step closer to being NED then i'm gonna hang in there as long as i can..

Anonymous - (6/1/2014 - 6:50pm)

I reread some of the earlier replies.  I would suggest that you ask your doctor for an Rx for prednisone in 10 mg and/or 5 mg doses provided you have an amiable drug plan.  If you have an aggressive GI track response to the Yervoy, see a gastroenterologist in addition to an oncologist.  The oncos tend to reduce the doses of prednisone more rapidly than the GI docs. My GI was familiar with ipi induced colitis. My response to the ipi was extreme. the GI doc helped me a great deal by giving me the 2 infusions of infleximab (Remicade) and managing the reduction of my prednisone from 100 mg/day to 5 mg/day over 3 months.  Slow and steady wins the race.   Remember MOST people do not have adverse reactions to Yervoy.  We don't hear about them.  I go for blood tests every 6 weeks as part of the study.  I don't have a PIC line.  If you swim, I would ask about the advisability of getting one.  I've been NED since my entire left paritod gland and all  the lymph nodes in the left side of my neck were removed in June of last year.  It's all been worth it.  Hang in there. your are not alone

Ginger8888 - (6/1/2014 - 9:52pm)

Thank you, I've asked the dr if they was going to put a picc line and he said that it depends on how the drug company suggest or something like that..I have a teaching class tuesday on the Yervoy so i will ask several questions thanks to the wonderful people on here...