Nivolumab and ipilimumab.

Hi JillyAB, I’m sorry to hear about your husband, it sounds like you both may have had a rough time lately. I haven’t had Ipi and nivo but as you hadn’t had a reply and know that lgrgdg90 has amongst others on here I thought I’d see if tagging her might get you a reply from someone who’s had those drugs.

(Im on Pembrolizumab which is like Nivo but I have to change back to target therapy tablets soon)

I noticed this was the only group you joined and I wondered if the Carers Only - Discussion Forum, would help as well to vent or get support for any carer specific stuff. 

Hi yes I have had the four treatments with Nivolumab and Ipi .I am now on Nivolumab every four weeks.  My tumour burden was high when I was diagnosed as I had a large tumour near my kidneys,some in my lung and one near my spine. I had previously 7 months on the tablets but after an initial reduction the tumours began to progress. I felt better on the immunotherapy treatment than the tablets.  I was one of the lucky ones who coped with the four treatments of the duo. I developed vitiligo on my arms and neck. It is permanent but a small price to pay for results. I had joint pain at times but not too bad I developed a slight itchy rash but again very mild and antihistamines seem to work. I am now on Nivolumab and have been for over two years. I was surprised to hear that I will be on it indefinitely. I only now have slight tiredness after the infusion .My tumours have disappeared from my spine and lungs. A vertebra in my spine has collapsed I think due to the cancer but it doesn’t stop me from leading a full life. The tumour which was 18 cm near my kidney has reduced considerably and it may be dead. I am grateful to continue this treatment. I am due a scan result on Wednesday and I do get nervous leading up to it. I have come to terms with my illness now but at the beginning it was a different story. I was so anxious and depressed. My husband and friends helped me through the difficult time. I also went to a cancer care place but it had variable impact on me. I walk everyday. Go away as often as possible. Eat healthy most of the time. I also decided to cut out the activities and people that had a negative  impact and make the most of each day.I do wish you well. I found the oncology team very kind and helpful if I had even a small concern.

Thank you so much.  He was on Pembro since December but has developed small lumps in brain, lungs and tummy so they’re switching.  It’s all so scary. 
thank you for your response and your insights. 
take care. x

I had al 4 doses of Ipilimumab and nivolumab for my rare stage 4 melanoma. Side effects I had were vitiligo all over, white and thinning hair, gastitis and diarrhoea due to colitis. The side effects were easily controlled by steroids and loperimide and some lansoprazole.

The treatment worked by reducing my initial tumours in my pelvic area and lymph nodes in 2019 after which I went on to only nivolumab. Unfortunately my Cancer type is aggressive and rare and nivo stopped working June this year.

I still would say definitely worth it even if to extend prognosis.

I am sorry the Nivolumab has stopped working for you. I am always concerned this will happen to me. Would you mind me asking what treatment have you been offered now. I read that people can have a second course of ipi but I am not sure if it is available in this country. Take care 

Hi, I had 2 infusions of Ipi and Nivo at the beginning of last year. I was meant to have 4 doses but had to stop treatment due to side effects (mainly something to do with the kidneys) but the 2 doses I had were enough to shrink one tumour and stabilize another so I think it is an effective treatment. I remember it gave me an itchy rash for a while but apart from that I felt fine.I hope your husband does well on it. 

Thank you for your Honesty. Take care. 

Regardless of nivo failing for me, depending on your cancer type I have read posts from others where it has done wonders. I have now been offered palliative chemo which again might extend my prognosis or might not. But I'm taking this last chance. I inquired with my oncologist about repeating the ipi and nivo but they said it was only given once. Maybe someone else can shed some more light on the situation.

The online community has helped me accept my situation to some extent compared to couple of months back when I was a total mess.

You might always have the worry at the back of your mind about nivo not working but talking it out on the forum really helps. Hope yours continue for a long time.

I hope the chemo works for you and you don’t have too many side effects. They are bringing new treatments out all the time so hopefully we will hear of some other amazing drugs. Take care and thank you for your reply. I agree this forum is a great help to people .

Hi KTatHome. I am fairly new to the forum. Please read my profile. I have my 1st Oncology appt this Friday and feel very scared as to what to expect. You mention all these drugs, are these the immunotherapy drugs? Do you have any idea why they offer these instead of chemo or radiotherapy?. Is was told yesterday the melanoma has spread to my lung. Any info you can give my would help greatly and put my mind at ease

Sending love

Parklands