After effects of immunotherapy

Hi Lv2garden.

We are so sorry to hear about your partner's diagnosis and great to hear he is in remission. Unfortunately I have no knowledge of the side effects of immunotherapy treatment. My Mother passed on 28th December following a 5 year battle with cancer so I have some experience but unfortunately cant help you at this time.

Please know that we are here for you, with thoughts truly and deeply meant.

I promise, it will get better.

Myles.

Firstly as he should still be under the care of his Oncology team you should certainly seek advice from them.

Otherwise, the answer may depend on the drug he has received. For instance my own Pembro (Keytruda) is known to have skin peeling as a possible side effect, bearing in mind it can cause severe dehydration thoughout the body.  The CNS may be able to help.  Unfortunately as in my own case new side effects can arise after the end of treatment.  Fatigue is a very common consequence of all treatment and nausea can be helped by medication from your GP.  In my case the hospital asked the GP to prescribe Domperiodone on repeat prescription.  Wishing you both good things.

Domperidone

MylesLBF

Sorry for the loss of your mother. Thank you for your response. It's appreciated. 

Thank you for your response and your good wishes. It is reassuring that fatigue is a common side effect and not specific to him. He gets frustrated as he can't do the things he used to do due to a lack of energy.  He sees his oncologist every 3 months at the moment.  He is now going to be referred to the gastro team to investigate his stomach issues further. Fingers crossed things can improve. Wishing you all the best with your recovery.

Hello,

I'm just responding to the colitis+immunotherapy bit. Apologies if you already know this. I am still on immuno (2 Ipi/Nivo + 16 Nivo). I had Grade 2-3 colitis for months and months. It has died down now but my consultant says it could come back. It is common.

I was given Prednisolone steroids to control the colitis but it was ineffective unless the Pred dose was really high, e.g. 70mg. However, after a few months (arrrgh!! why not earlier?!?!?), they gave me a steroid that is absorbed by the bowel only: 5mg of Beclomethazone [brand name: Clipper]. This was amazing and sorted me right out, without any of the side effects of Pred.

The lead consultant on my team advised me to go gluten-free to help the colitis. He said he had some immuno patients who developed a sensitivity (not an allergy though) to gluten because of the immuno. It helped me. For some reason I can't remember, I started buying lactose-free milk too. But I wasn't religious about either of these things: just for the bulky stuff.

Reducing inflammation of the gut/bowel, diarrhoea, etc. (all the symptoms of colitis) helped me gain a bit more energy back. [Then my adrenal gland broke because of all the Pred but that's a different story!] Diarrhoea is very energy-draining.

I hope your partner gets the support he needs. Warm wishes to you both.

Dots

Hi. Yes I only had 3 sessions of immunotherapy and had to stop due to adverse side effects. Amazingly it’s done a great job with the melanoma neck down but struggling the brain mets they keep popping up inspite of exc SRS. Even now, 14 months later I’m having a gastroscopy as colitis or sone tummy problems there. 

1. Hi Dots thank you for your response. Glad your colitis has settled down. Useful information about the beclomethazone. We have finally received an appointment to see the gastro team. So fingers crossed they can help. We have been trying to determine which foods affect him the most but at the moment it doesn't seem to matter what he eats as he becomes bloated and uncomfortable. We wish you well with your immunotherapy treatment. Fingers crossed your colitis doesn't return. Kind regards