Immunotherapy

Hi Rain and shine  

I haven't had the same experience as your husband but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier to spot.

It might also help to get replies if you could tell the group the name of the immunotherapy treatment your husband is on. I did have a look in your profile before I replied but you haven't completed it yet.

While you're waiting for replies, it would be great if you could pop something about your husband's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select '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.

Hello Rain and Shine,

I don't have any experience of kidney issues but I am currently on a repeat of a course of steroids. I have stage 4a melanoma. I had 2 doses of Ipi+Nivo then developed Grade 3 hepatitis as a side effect. My  Ipi+ Nivo was stopped. They did scans. When they found that the immuntheraphy was working ('a partial response') they switched me to the single Nivo. They also paused my treatment plan while a course of steroids really sorted me out. However, when I was tapering off the steroids and got to the 10mg and 5mg doses, a different side effect started. It first appeared as constipation and turned into Grade 2 diarrhoea.

I'm now on steroids again. It's only about 2 weeks since I was off them! Another pause in the treatment plan. However, I feel well and, though I've no medical knowledge, from what I've read in NHS websites about protocols for managing immuno side effects, it appears that these pauses don't stop the treatment from working effectively. It's a 'no problemo' situation. SO, I am calmly anticipating that the same thing may happen again when I taper off this time: necessitating pause number 3. But I think it's completely okay. My consultants talk about this period as one of 'settling down on the drugs'. 

I wasn't particularly closely monitored - like your husband - during my Grade 3 hepatitis. Just some extra blood tests. However, I did feel well, so I wasn't bothered.

Like your husband, steroids caused me to put on weight, partly due to increased appetite and partly due to water retention  to my face and body. It's all very normal, but so unfair - especially with all the diarrhoea. I thought I was on my way down to a Size 12!! ;) Hopefully, it will all drain away quickly when I come off the steroids again. I also have insomnia from the steroids, and get about 4 hours a night, which I top up with some 30 minute naps during the day. Also normal.

I hope this is reassuring. 

With warm wishes,

Dots

Thank you for you response,  my husband has a face to face with his consultant on Monday so hopefully we will learn more. He is now taking his syeriods one every other day and it is planned he will need a body scan.  

Thanks again and good luck with your ongoing treatment. 

Mt husband is being weaned off his steroids taking one every alternate day. However this week he has become very tired and lethargic he seems to have no energy. His appetite is  not very good he says he just doesn't enjoy eating.  I am very concerned 

I'm on my second weaning-off phase of steroids of the summer. I never had them before in my life, so it's been a learning curve. I found it pretty weird! I can tell you what I felt like but also I have to say if I feel very unwell, I ring the Acute Oncology Service nurses.

There were times on steroids (70mg, 60mgs), when I was constantly awake and constantly hungry. However, there were times too when coming off steroids, I experienced: extreme lethargy, 'rheumatism-like' body pains, total brain fog, mood swings. I felt my body was wading through thick, wet concrete. These symptoms changed in a flowing way from day-to-day. I wasn't stuck for 3-4 days in wet concrete. To help myself, I tried to go for a walk every day, even 5 minutes, and I did some household chores (washing dishes) so I'd be moving my body. I had plenty of 30 minute naps. I believe these symptoms are normal, based on what a friend who also has cancer told me. My understanding is that the body is out of balance in producing cortisol for itself while weaning off steroids. Hence, the symptoms. These stop when the body produces its own regular amount of cortisol again.

I tried to eat 4-5 small things during the day and always gave myself food I knew I'd find irresistable to finish (sausages and mash, Cully & Scully chicken soup, Cheerios, Magnum Almonds, home-made chicken fried rice, crisps, dried mango). Unhealthy, but I prioritsed having calories rather than no calories. This way, I knew that my lethagy was not caused by calorific deficit. If possible, I prioritised protein. I found it difficult to finish my meals but enjoyed thinking about my favourite foods.

Warm wishes,

Dots

Thank you so much this is so reassuring 

Well yesterday we had a face to face with the consultant and it has been agreed the immunotherapy is to be stopped as there is now a risk to the kidneys. My husband is to be monitored and to have a full body scan. The way he is feeling at present is as you say a result of the steroids this is expected to improve and the facial swelling should go down. His thyroid is fluctuating but agreed to see if it settles over the next few weeks. I don't know if it is good news or not. Given from the very beginning the source of the cancer was never found but his lymph nodes were affected 3 out of 35 tested positive for cancer. Time will tell