Yervoy for Stage IV: Your Experiences

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  • Please share your experiences with using the newly approved treatment drug Yervoy. What side effects have you had and how did you manage them?



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  • I am happy to share, that today I went for my first result meeting with my Melanoma doctor and YERVOY / IPI is WORKING! My lung tumor (almost 4cm, is down to almost NOTHING), and my Liver Tumor (was 6cm is down to 2cm) and no new tumors on my brain! This was the 1st result sharing since I had all 4 injections from Sept '11 thru Nov '11.

    I was diagnosed in June 2011, went thru a Craniotomy on a brain tumor, then was diagnosed with Lung & Liver tumors, and this was my 1st treatment given for those!

    I'm 31 years old, and had NO single side effect! None that I ever noticed, no colitis, no itching. I struggled online trying to find data, or numbers from bloodwork, that would help give me a boost in confidence that this treatment would work, and I never got the data I was searching for, but it WORKED, somehow & someway!

    So, if you are gearing up for Yervoy and wondering if it'll work, just remember that no matter whether you are experiencing side effects or not, THIS CAN work!

    Best news from the doctor (which is the person you want to hear these things form, not online statistics that tell you about every person who tried this, who failed or succeeded!), is that if this works, it will continue to do so, as your body has 'memory' cells that recognize these nasty cancer cells and will continue to fight it off, even once you are finished.

    I go back again in 3 months for another scan & checkup and will then again see if I need to continue to get extra injections!

    This has lifted my hopes, that there is a chance out there for all of us Stage IV fighters to continue fighting! Don't pay attention to all the horrible statistics out there like I did before I got my results (I scared myself into crying daily for months!).

  • I have metastic melanoma stage 3c and am in a clinical trial for the drug Yervoy. I had my first infusion 3 weeks ago and was scheduled for my 2nd one this week, however due to side effect of extreme itching my oncologist perscribed a steroid and now my second treatment is postponed 2 to 3 weeks. Apparantly, the steroid has to be out of my system in order to complete another treatment. This was not explained to me before I started taking the steroid and I am extremely frustrated that it has delayed my treatment. From what I have read itching is very comman so I would be interested to know how your Oncologists have treated this.

  • My husband was diagnosed with melanoma June 2, 2009. My husbands is acral lentiginous melanoma - it started out looking like a nail fungus. His lymph nodes were clear and still are to this day. It has spread through his blood.

    He has done interferon, IL2, 2 different types of chemo, and Yervoy. He has also had 5 surgeries.

    Currently he has mets in the lung, abdomen, liver, and leg. Side effects of Yervoy that he has had are diarhea, rash and itching. The dr has him up to 60 mg of Prednisone a day (started this Monday night) and yesterday he finally looked and acted better.

    We don't know if the lack of appetite is from the Yervoy or the kidneys/liver. Treatment (chemo) damaged the kidneys; shut the right one down completely and the left has 20% function. They put a J-stent in between the bladder and the right kidney two weeks ago and he now has 22% funtion.

    The liver is covered with lesions. One of the side effects of both liver damage and kidney damage is weight loss. He has lost 74 poinds in 12 weeks. He has had part of each lung removed and uses oxygen at night. Also needs it some days.

    He had a bone marrow biopsy about a month ago; this showed no cancer in the marrow but he has sideroblastic anemia.

    Unless Yervoy is going to be a late start on my husband; it didn't work for him. At beginning of treatment he had 3 tumors in legs; now he has 20 - 25 tumors, he had nothing on the liver; it is now covered with lesions, the abdomen is new, the lung he had a few and they have all grown plus new tumors.

    So Dr is going to try temador (sp) and one other drug with it; on the 28th he will start. Dr also said we need to discuss hospice but Larry doesn't want to yet.

    He has good days but unfortunately alot of bad days when he can barely get around. But we cherish the good days and get through the bad as best we can.

  • Sonja - I am so sorry for your husband's struggle as well as yours as a caregiver. My dad is stage IV metastatic melanoma with inoperable mets.

    You said the chemo damaged your husband's kidneys. I just want to be absolutely sure I understand that it was not the Yervoy, but the chemo? My dad had renal failure from antibiotics a few years ago, but came back to almost full functioning. I wonder if the Yervoy then will be his only option. I haven't been to appointments with him, and I know my parents are so overwhelmed they can't possibly remember all the details.

    As to his experience on Yervoy, he's 3 infusions in, his last one is 12/19. He's had a lot of itching, rashes, extreme fatigue, loss of appetite and as of yesterday, restless legs.

    We're all looking forward to the next scan to see how his tumors are doing.

  • The nephrologist was not concerned with the Yervoy at all - it was from the chemo that he received over the spring and summer.

    What is your dad's name I will add him to my prayer list.

    If they don't have him on steroids yet I would ask about them it has really helped Larry.

  • His name is Paul. Thank you Sonja. I will do the same for you and Larry.

  • In May of 2010 I was diagnosed with Clarks 5 melanoma on my left chin. Surgical excision was done without lymph node biopsies. I did 4 weeks of 5 days a week infusions of interferon. That was really rough! I felt like I had the flu for a month! It was decided that I wouldn't do the interferon shots for 11 months after because the benefit was 1% difference. Two weeks after I finished interferon I started radiation therapy. I had 5 treatments which wasn't so bad. My follow up PET scans were good until July 2011.

    That scan showed 2 tumors in my right lung. My oncologist felt Yervoy would be a really good drug for me so I started in Sept.

    It was not nearly as bad as I thought it would be! I had very little side effects!

    I had some fatigue and a little nausea but not enough to to keep me from work!

    I finished Yervoy first week of Nov. My first PET scan showed that my tumors doubled in size. My oncologist said that he has seen in some cases tumors grow before they shrink. That was 4 weeks ago and I go for my next PET scan on Wednesday.

    Over the last two weeks I have notice a decrease in the cough which I have had for months now so maybe it is a positive sign!

    This drug has shown amazing results in alot of people! Good luck to all my fellow warriors!

  • Cathy, I hope the 2nd scan shows shrinking. My doctor said the same thing before I got results, that many times people get enlarged tumors, then they shrink after the 1st scan is done. I'm still amazed mine shrank so quickly, I can only hope it continues. I was not aware that this Yervoy only works on 1 out of 10 people he said. If I had known that before, I would have been filled with even more anxiety about it working.

    So sorry to hear about everyone else's experiences, we never think cancer will happen to us, at least not until later in life as I always thought it would. Being diagnosed Stage IV right away was such a shock to me, no warning, no time to watch my skin/moles, etc, just BAM, you have cancer, Stage IV!

    This is my 3 happy months with no treatments or tests. Enjoying it so far, I just dread what the future will bring though.

  • Cathy praying that 2nd scan shows shrinkage. Jackie; yes I understand the shock or stage 4 right away. Ours was more skin cancer - so? Know better now and try to educate others. Praying that you remain disease free.

  • George, Sounds like I am on the same clinical trial as you. I had my 4th and final infusion this past Monday. I had some minor rashes and lots of itching. I was given a steroidal cream for both that seems to have helped. Cathy, I also have had a cough for almost 2 months. seems to be getting better slowly. Not much to report on the size of my tumors, as they all had to be removed between the 2nd and 3rd infusion. I did have one small tumor completely disappear after the 2nd infusion. My PET/CT in March should be all telling. Best to everyone here.

  • Hello all! Thank you for sharing your experiences.

    My mom has Stage IV melanoma and is about to have her second dose of Yervoy on Tuesday. For several months she was in a clinical trial at Hopkins for the next generation drug from Yervoy(ipi) but she developed skin rashes and itching that was very hard on her. So now she is on ipi. She has tumors in her stomach and lungs and liver. After her first ipi treatment she has been having stomach pain ( not nausea) and lower back pain. I am trying to help her with research, etc as she is not computer savvy. Trying to reduce her stress levels and getting her to gain some weight has been a challenge. I am very hopeful that ipi will be able to shrink these tumors.

  • Thank you for sharing your experiences. My dad is going to start his second infusion of Yervoy on Tuesday as well. He has had a skin reaction, as well as a cough and lower back pain as well. What are some common side effects. We always worry that the cancer is spreading. His has always been in is small bowel.

  • All, thank you for sharing! Your stories have helped me and my wife understand alot about this treatment and given us hope!! My wife is 31 and has Stage IV metastatic melanoma with lesions throughout her lungs, liver, kidneys, spleen, skin, brain etc. She started a Yervoy and Dacarbazine combination on 1 Dec and has her 3rd infusion coming up next week. She has constant stomach/abdominal pain, lower back pain, extreme fatigue, anxiety, and a chronic cough that seems to be getting better. We've noticed that her strength increases for a couple days after each infusion, but steadily declines leading to vomitting and an inability to move around on her own. Her first Scan since starting the treatment is coming up in a couple weeks and we're praying for good news!!

  • Stage IIIb, just finished ipi clinical trial (last infusion 12/12/11) for stage IIIb-c. This was a higher dose than FDA approved treatment back in 3/11. Having my first PET/CT following next week. During monthly lymph node check, discovered lump in my groin. Very disappointing and frustrating. Had same result after finishing year of interferon in 2010. I know this is a stage 4 thread,but only ipi forum I have found. Still have major itching and minor rash. I also had a bad cough which is getting better. Anxious about PET/CT next week.

  • Just took my wife (Stage IV; 10mg/kg ipi/dacarbizine infusion once every three weeks) for labs and her weekly check-up today. Blood work wasn't very good. Her Albumin was extremely low, kidney function was declining, she was dehydrated, and had fluid build-up around her stomach/lungs and legs. Oncologist decided it would be best to admit her to the hospital for observation and replace the Albumin to try and get rid of the fluid build-up. Doc wants to do a PET tomorrow to see if the treatment is working before attempting the third infusion next week. Thank you all for sharing and please keep my wife Bobbie in your prayers.

  • Update on my husband; we went to the nephrologist Wednesday - not good. Last week his eGFR (kidney function) was 30 this week 9 - no longer a candidate for any treatment. If the decline continues at same speed it won't be long. He is in alot of pain; having difficulty navigating from the bed to the chair. Praying for all of you that you get that miracle from IPI. Take care of yourselves also, I know easier said than done.

  • Fixing to have last infusion of Yervoy.. so far have not had any tumor shrinkage but have everything in a stable status.. those that are curious about side effects mine have been mainly body aches and muscle fatigue and fatigue in general. Have not had the typical side effects such as the colitis issues. But have had a small rash and some itching.. but nothing to bad.. I have been accepted into a TIL trial so hopefully this will be the healing and cure I've been waiting for. I am extremely pleased with how ipi has worked and wished it would've taken care of it permantely but in my book having a partial response is better than nothing at all. I also fully believe that God has healing in his plans for this disease we just have to go through the journey to claim the victory.. So please everyone stay focused on God for he WILL get you through this just like he has done with me. NOTHING is too hard for God. My hometown drs. Gave me 6 months to live. But God had bigger plans. I was blessed with amazing nurses and drs at MD Anderson and have surpassed that prognosis. GOD has a plan for all of us. Trust in him and

    claim the glory. Melanoma has not ruined my life its made it have more meaning. Keep your head up and focused on God.

  • I have been battling melanoma on and off for about 10 years now and up until last may it had not spread to any organs. Now, I have nodules on my liver and spleen. I tried a few rounds of Yervoy, which did not work. Now I am on Zelboraf and the tumors on my liver are shrinking, but they are concerned about new lesions on my spleen.

    I had numerous side effects on Yervoy. I had EXTREME EXHAUSTION, loss of appetite, weird cravings, vomiting and a cough. There were times when I would not get off the couch all day and would not leave my house for days. It was not pleasant.

    On Zelboraf, I feel much better. I have joint pain, a rash all over my body, loss of body hair, hair thinning and dry skin. Other than that, I feel great!

  • Sorry to hear about everyone else's melanoma fight, we can only hope these immunotherapies can give us more years for them to find other treatments to keep fighting this off as long as possible.

  • Yervoy worked really well for me...actually I took it over 3 years ago as ipilimumab. One interesting thing though....I experienced total permanent hair loss and lots of vitalago (sp?).

    I also went on Zelboraf (2 years ago as PLX4032). Amazing drug. I actually think there's something to be said for the fusion of Yervoy and Zelboraf.....

  • Memphis James: I pray your wife is doing better

    Shawnda: Beautiful words, God is in control!

    I had my first Yervoy iv on Friday, very anticlimatic like the dr predicted. Felt the same as a saline drip. It was 90 minutes long and because it was my first injection I had to stay an extra hour for observation. My main issues are stomach pains and nausea but that was from before the iv, started about 2 weeks after I finished whole brain radiation. I feel almost like I have morning sickness where the smells are triggering the nausea. And my stomach pain is like a bunch of staples in my stomach. I had that same feeling before in high school, drs said it was ulcers and I can TOTALLY see how I could have worked myself up to having ulcers with all this cancer!

    I had a CT scan right before I was given the injection and the tumor in my lung grew (which I was warned was to be expected since the last CT scan was in Oct) but now I also have tumors in my lymph nodes near my lungs, soft tissue in my abdomen (fat!), and both ovaries. I'm not happy but I keep recounting Judges 6-8 where Gideon's army was reduced from 32,000 to 300 and just by making loud noises and waving torches, they defeated the mightly Midianites. God did reduced Gideon's army like this so that Gideon or his army couldn't be tempted to say that it was through their strength that they won, they would have to acknowledge it was through God that they gained their victory. I feel that God is making me like Gideon, giving me just enough of a battle that I can't claim to have won this on my own.

    I just pray for more faith and for guidance. I'm scheduled to start my final semester of college and student teaching in 12 days and I can hardly get out of bed. I teeter with delaying the semester again (I had to delay it last semester because I started the semester with thyroid cancer and then it just snowballed when the pre-surgical xray found the melanoma in my lung) or trusting in God to deliver me through this. I just need God to tell me which way to go, rest this semester or trudge through and walk on faith.

  • My husband, Larry passed from this earth to be with our Lord; Jesus Christ, on January 10, 2012. He battled melanoma for 2 years 6 months and 8 days. Thank you all for your support and prayers.

    Sonja

  • Sonja, I'm so sorry for your loss. I pray that God showers you with love and a peace beyond understanding during this time.

  • Sonja, I am sorry for your loss.

    Angi, thank you for your post and sharing your experience. My mom has had two courses of ipi. She is also struggling with stomach pain and nausea. It has been tough on her. Her tumors got larger after the first ipi ( and she was also in a clinical trial for the next generation of ipi for several months), but her blood work looked better. I learned through this site that often the tumors get bigger/inflamed before they start to shrink so we are hopeful. I am trying to keep her hopes up and her thoughts positive.

    I love the Gideon story and the way you link it to this battle. I will share it with her.

    I pray that God will give you strength to keep going and peace to follow the path He wants for you right now.

    Hoping my mom can get her third ipi infusion on Tuesday, but she is struggling with a bladder infection and cystitis so had to go on antibiotics today.

  • Memphis and Shawna keeping you and your families in my prayers.

    Prayers for everyone here and their families traveling down this road.

  • Sonja, I am sorry for your loss.

    My prayers go out to all of my sister and brother warriors. This is a difficult battle which we must fight and fight with all we have.

    I am curious on the length of time patients experienced with Yervoy before they saw results.

    My last treatment was Nov. 2. My first PET scan showed the expected progression before you see response. I have had a C.T. since and no change. I would think that after 4 months I would see some shrinkage? I guess it is good that I show no new lesions. By the way, I have 2 tumors in my right lung. Mets from my chin...

  • Cathy,

    my oncologist said that she would be happy with no growth, even if there isn't any shrinkage. Me - I would like to see them disappear!! ;) I finish treatment in 2 weeks, I'll let you know how my tumors look as I begin to get my post treatment CT scans. Are you BRAF+? Because my oncologist already has me lined up to begin treatment with Zelboraf if she's not satisfied with the CT scans.

  • hello everybody, i'm italian (sorry for writing errors in english language), my father has melanoma stage 4 with cutaneus and muscle metastasis but not in internal organ and he was doing for four months chemioterapy with dacarbazina e cisplatino without results, so we are attending for zelboraf because my father is braf mutation positive. have you ever tried zelboraf??? Is it effective?

  • My 75 year old father has been on yervoy and gm-csf for over a year now. His lung mets have shrunk to the point that his Oncologist thinks that they may now just be scar tissue. He experienced fatique, some adrenal failure but it seems we have that under control, a horrible rash one time and some fluid build up. Most days he could still do is normal routine. If anyone has the chance for the clinical trial with yervoy and gm-csf I highly recommend it. I'm praying for all of you and your families.

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