Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Opdivo + Yervoy Immunotherapy

Lou1986
Posted by

Hi,

Has anyone on here had the combination of opdivo + Yetvoy immunotherapy? I understand this was a trial until fairly recently. My 41 year old partner had his first dose today for RCC Carcinoma which has spread to lymph nodes and brain.

I would like to find out how long it will take to see improvements (if it works for him of course). I know everyone is different so I can’t get an exact answer but it would be great to hear from other people on the same drug and maybe if you could list the side effects you experienced that would be great. 

I’ve read the leaflet extensively but all I see is a generalised possible side effect list, I’d like to hear real experiences. At the moment his temp is 39.4 which is really high but he is insisting he feels fine other than being incredibly tired. I’m worried as I feel I should be treating this as an emergency but he said no. 

I hate this so much, it’s terrifying. He is currently lying next to me sound asleep and I’m awake worrying!

Lou

Dream as if you will live forever. Live as if you will die today - James Dean
latchbrook
Posted by

Hi

I'm not a member of this group but I was passing and noticed that your post hadn't yet had any replies.

I don't have any knowledge of this combination of drugs but if you type 'nivolumab and ipilimumab' or 'Opdivo and Yervoy', into the search bar in this group you'll find a number of posts where people are talking about it. You could have a read and reply to any that you feel are relevant.

When you feel up to it, it would be really useful if could pop something about your sister-in-law's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Wishing you and you and your partner all the best

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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titus
Posted by

Hi

Lou 1986

I had four or five infusions of Opdivo and it was a breeze. When my Onc first mentioned it I did some research and as you are aware it was initially used in conjunction with Yervoy in the USA. When i asked him about this he said further tests had shown it was effective on its own. A little bit of me thought this could also be down to cost but He Ho.

The infusions themselves were like a business class flight. Free food and soft drinks and slowly watching the fluid in the bag drip into my vein. I had minimal s/e compared to the Sutent I was on previously. For other reasons I was taken off it but the Onc said it would still be active in my body for six months.

If they wanted to put me back on it I would have no hesitation in accepting.

I sleep very quietly and my wife also lies awake worrying. Sometimes giving in to the temptation to poke me to make sure I am still alive.

Titus

May the sun shine on your face and the road rise up to meet you

Lou1986
Posted by

Hi Titus,

Thank you for your reply. Can I ask how long it took for you to see improvements on this treatment? We are planning to get married in August and I just don’t think he will make it down the aisle at this rate due to the pain. 

Thanks 

Lou

PS sorry that your wife pokes you. I do the same to my fiancé I can’t help it!! 

Dream as if you will live forever. Live as if you will die today - James Dean
titus
Posted by

HI

Lou 1986

Its a bit more complicated than that.

Whilst taking the Sutent the original site stayed stable but I got a met on my spine. They tried radiotherapy but it didn't work. After 4 ish months on Opdivo they decided on surgery to the spine. Pre op scans showed that the met was also stable. Unfortunately during the op I caught an infection so they had to do a second and then a third op. This left the site, “confused” . I will have scan at end of this month.

Re pain control. I take two paracetamols four times a day. Wear a morphine patch changed weekly and take Oromorph as required They can make you sleepy and cause constipation. These I get from  my GP as the system seems to be the GP prescribes the additional meds you require.

Congratulations on your wedding. We have just celebrated our 50th anniversary. Make the most of every day

Titus

May the sun shine on your face and the road rise up to meet you

Lou1986
Posted by

Sadly I am learning that it is never simple or straight forward when it comes to cancer.

im so worried at this point that he won’t make it to the wedding it’s literally all I can think about cancer/wedding/cancer/wedding it’s awful! Obviously if we have to cancel the wedding then it’s fine, my number one priority is his health. I’m just so scared for him and there is nothing I can do to control this situation. I want him to be well for the wedding because it means he will still be well in 3 months. It’s like I’ve started setting goals that I’m not sure he can reach in the hopes that he is still here in the future. Just writing this is making me tearful!!

congratulations on your 50 year anniversary that is absolutely incredible. I pray to anyone that will listen that we make it there too. We are a good 40 years away from that yet!!

i hope that you get good results at your next scan, please keep me posted. 

Lou

xx

Dream as if you will live forever. Live as if you will die today - James Dean
Lou1986
Posted by

On a plus note his pain is gone now and yesterday he didn’t have any morphine at all, he just feels a bit nauseous and still has a constant cough which reminds us every second that he has spread to the lungs. He’s so up and down I don’t know what to expect next!!!

Dream as if you will live forever. Live as if you will die today - James Dean
Digdog
Posted by

Hi lou1986

My hubby had his first dose yesterday and so far so good.  We have not been given any indication when we can expect to see any difference in his symptoms. It was only discovered when he went to the GP with a persistent cough.  I can understand that fear of the unknown, it is sometimes very difficult to deal with.  Please try and stay strong for both of you. You are in my thoughts .

amye
Posted by

Hi lou1986, My Hubby started the combination opdivo and yervoy in March he was told he would receive the opdivo every 2 week for 3 months then have the 2 together again after 3 months for 12 months in total , He originally had his kidney removed 11 years ago then the damned thing came back on the renal bed so had another op to remove it , then in September 2018 Mets showed up on his rib which he had radiotherapy for , then the damned thing spread to his lungs and spine , however after he started the double therepy in March he was fine it was when he had the single dose he started with severe diarrhoea, weight loss and nausea he was put on a high dose of steroids which helped him ,once we got the steroids down to a low dose he was eating fine and gaining weight  they decided to start the treatment again unfortunately the day after treatment the diarrhoea became so severe he landed up in hospital so they could get it under control which they have with a mountain of drugs , He came home on  Wednesday and is now constipated ( I have learned so much about bowel movements in the last 4 weeks  ) lol but he is fairly well the pain is under control and his scan last week shows the cancer is stable,  you will find no 2 days are the same with this damned disease,  high temp one day low temp the next,  pain one dayno pain the next day etc if you are worried about anything and have a hotline number to the hospital that are treating him please phone it  some symptoms can be scarey to us, but are everyday occurrences for our oncologists.

Sincerely hope that this treatment works for him so you can both enjoy your wedding,.

Sending you a virtual hug. 

Jo300
Posted by

Hi Lou

I can't give you any advice about he drug combo, but your concerns about the wedding really hit home for me on two levels. I'm a wedding photographer, so I see how important the spectacle of a wedding is every day. However I also got married myself last year, so see it clearly from a personal perspective too.

When I was diagnosed again, we were just kind of moseying along quite happily, with no real plans. The diagnosis put our lack of plans into really clear perspective for me and it scared me. Having plans, whatever they are, means I have a future. So even on slightly rubbish days, I have a great future to look forward to. Having a date for the wedding and a goal to be well and something to really focus on that was my future was such an incredibly positive thing to have. You both need that. It doesn't need to be huge, all singing, all dancing, if you want to get married, the most important thing is that you do it, not how you do it.

Try to look forward. It's much easier if you have something to look forward to xx

Jo
x
Lou1986
Posted by

Thank you digdog, my fiancé has a constant cough now too, so scary. We will stay strong and you do the same, Liam has told me he feels like the treatment is working after just one round but I guess everyone is different and time will tell xxx

Dream as if you will live forever. Live as if you will die today - James Dean
Lou1986
Posted by

Hi Amye,

Liam’s treatment seems to be going well, he was bed ridden for 2 weeks and didn’t eat a thing then last week he just perked up and got the hungers, he’s incredibly lethargic but slowly getting better. No  diarrhoea yet but he’s constipated too. I know what you mean about the bowel movements, it’s an active subject for us too! Sorry to hear your hubby is having such a terrible time with it, thank god the pain is under control now, nothing worse than seeing your loved one in pain when there is nothing you can do to help, it’s awful!

we saw the oncologist tonight and I saw his scan results for the first time, this was taken just before treatment started as a benchmark. It’s worse than I thought. He has so many tumours in the lungs I stopped counting after about 8 then his right kidney tumour is so large it literally goes from his front side to his back and is bigger than a large fist. I didn’t ask for specific sizes but I did compare it to the other kidney which you could see clearly and it was about 5 times the size in mass. There is a potential spread to the liver although that wasn’t clear on the scans so could just be nothing and there is spread to the lymph nodes in the middle area near the stomach. That’s on top of the brain mets, it just feels like an impossible battle! 

Good news is he is off the morphine now and getting very little pain, eating well and getting out of bed again. All of that is a plus for me. I just hate this so much. To top it off we lost our beloved house rabbit this weekend (he was 8 though so a good age) and we were both devastated but it just got me thinking I was so upset about losing the rabbit how am I going to be if or when I lose him, it absolutely terrifies me.

Either way this wedding will be an amazing day, a chance to get everyone together to celebrate and then 3 weeks on a beach with him somewhere if he’s well enough, I just want to create some amazing memories with him. I can’t wait to be his wife. We’re lucky that his treatment will have a break during the wedding so at least one thing is on our side!! 

You will be in my thoughts, please keep me posted with updates and I hope your hubby finds the right balance of meds to keep him well.

Lou

xxxx

Dream as if you will live forever. Live as if you will die today - James Dean
Lou1986
Posted by

Hi Jo,

Sorry to heat about your diagnosis, it sounds like you are handling it incredibly well. 

I know exactly what you mean about plans being in perspective, marriage was always in the distant future for me and Liam as was kids and after the diagnosis the whole thing was right upon us and the realisation that we might never have that happy ending was crippling. My career became less important, my studies got put on hold. I’m working so hard to become an accountant that i was working full time and studying on the side. This went on for 5 years and I only have another year and a half left but I’m doing all of this so we can have a better life financially. Without him I just don’t want it, I would have nobody to share it with and it became so trivial in the grand scheme of things. I’m sure I’ll go back to it eventually but not yet. I have more important things to spend my time on like my loved ones. 

ive warned all of our close friends and family that Liam might not last the day at the wedding and they all understand that and just want to be there for us. Either way the wedding part itself will be going ahead. The rest of it doesn’t matter without him.

ive set at least one goal a month, his birthday, his cousins wedding, our wedding, our honeymoon............ I need to think of more stuff come September....... I’m definitely looking forward and I just can’t let my mind go to a place where he won’t be there anymore. Positivity is the way to go for me, it’s how I’m coping with it all. Just believing he will be the one with the lucky escape (and it can happen). Miracles happen every day.

Please keep me posted on your progress, I’m sending good vibes your way

Lou

xxx

Dream as if you will live forever. Live as if you will die today - James Dean