Ipilimumab and Nivolumab treatment - update

That is great to hear and very reasssuring. As I have been worrying that because I have had such a serious side effect straight away, that it doesn’t bode well for the next 3 dual infusions. 

Hi Rubytip,

I had two doses of Ipi+Nivo, at 3 week intervals. I started in June 2023. 2 weeks after the 2nd Ipi+Nivo, I got a chest infection and hepatitis/abnormal liver function. It was painful and it took a long time to diagnose that it was the liver that was the problem. (I didn't help things by not going for a blood test when told by the Acute Oncology Service - I'd already had 2 blood tests that week that had showed nothing, so I thought there was no point. I was wrong! Bloods can change quickly.) However, when I was given steroids, the pain stopped pretty immediately. It was miraculous. My treatment was paused for 4 weeks while I recovered. Then, I was scanned - PET and MRI. Last week, the result came that the tumours in my lymph nodes have reduced in size and activity: "a partial metabolic response". 'Good news', the doctor said, 'the immunotherapy is working for you.'

They decided to stop the Ipi+Nivo, given that my tumours responded and given that the hepatitis was severe. I had my first mono nivo yesterday. I'll have it every month. Today, I don't feel any pain, just some fatigue.

Any pain I felt with the Ipi+Nivo was totally worth it. I'd do it all again! It's a brilliant drug. Also, I've learned that steroids are amazing and quick. Now, I'm feeling a bit apprehensive (I'd like the tumours to be gone) but I feel somewhat relieved because now one of the outcomes my consultants are hoping for is remission. 

This is just one story. I know that some people on Ipi+Nivo don't have any serious side effects and get through the 4 doses. However, there's plenty of good, and nothing wrong, that comes from just having 1 or 2 doses, if that's all the body can manage. Everybody is different. I wish you all the best and I'm glad that we're all receiving this incredible form of treatment.

Warm wishes,

Dots

Hi hope your doing well….adter a year how is the treatment! My wife has started her 4 week cycles

Hi, great to hear about your journey, it helps others who are going down that same path, me included. Just had session number 2 of double and other than a bad rash now controlled by antihistamine and creams and slight headaches now and again I’m a happy bunny. My fingers are crossed I don’t have anything else off that long list. I have just asked my Thyroid if it wants to go on a journey on its own to just leave a forwarding address preferably the Pub next door

Keep smiling my friend, great positivity. Keep fighting the fight. 

M 

Hi Mole. Sensitive creatures these thyroid glands. One wrong word and they're off in a huff. I have about four more monthly treatments of Niv to go (of 24 total) and touch wood (my head is the nearest wood just now) the thyroid loss was the only significant side effect. I do get very tired a week after each infusion but that could be my age! Main thing - just had latest scan result and everything remains stable! I'll take that! I wish you loads of luck for a similar outcome - and if you don't find your thyroid it at least sounds like it will be fun looking for it! Good luck my friend!

Hello everyone

I have been disguised with melanoma in my lung. Primary not found. It’s growing rapidly - and is adjacent to several important structures. I’ve already had it laser debulked, due for another next week; helps me to be less breathless and wheezy. The last 7 weeks have been a bit grim with multiple hospital admissions, scans, appointments whilst they try and sort me out.

However, next week I start Ipi-Nivo and can’t wait to get going! I feel very confident in the team caring for me and positive for a good outcome, hopefully with minimal side effects. Bring it on! 

It’s been helpful to read your stories and comments! Thank you 

Hi! All done and still no evidence of recurrent disease. I found Nivolumab very tolerable. I get a few aches and pains in my joints but it’s a small price to pay. Next lot of scans in Oct I hope your wife is getting on okay x

Kim_sing. Stay positive. My abdominal secondaries were sizeable and have resolved. I read a bit about immunotherapy and how it may be enhanced by an healthy biome. I already ate quite healthily but ramped up fruit and veg and added Kefir daily. It may have helped - who knows - but I felt better for doing something. The biome work was done at New York State Hospital and Columbia Irving centre among others. It is an exciting field of research.;it is not unsubstantiated quackery. Good luck. 

That’s great to hear. My wife had her 12 weeks of 4 ipi and nivo and the scan showed up to a 50% reduction in 6cm mass in her abdomen. She has just resumed her monthly treatment of Nivo only and so far only minor aches and little fatigue so hopefully ok. 

Wow. To get through all 4 Ipi/Nivo is amazing! I’m so pleased it’s working its magic x