Immunotherapy Options

Hi my husband has just been diagnosed with a melanoma and was given options.  He felt totally overwhelmed and uninformed about them.  We reached out to the Maggie Centre and spoke to a support nurse who filled us in on what both options entailed.  We found this so helpful.  The consultant won't advise you on which treatment you should choose!  Apparently, it has to be the patients decision, so for us the best way forward was to find out more information from someone who is knowledgeable in the procedures/treatments.  

Hope this helps.  Take care

Sue

Thanks very much for the quick reply Sue. I had just presumed the consultant would advise on what course would be best, reassuring to know it's not just him!

All the best to you and yours, jo

I am currently hospitalised as a result of side effects from the combined therapies.

I have had awful sickness and diarrhea lasting a week. The system is reacting to the drugs just as it should. It has the body on high alert to find foreign bodies and destroy. 

In my situation, I will do this treatment standing on my head to be allowed another dose of combined treatment, if that increases my survival rates. 

That sounds glib and I don't mean to minimise the decision, but this is cancer treatment. It isn't meant to be easy. And as hard as I have to take it, I know there are other cancer patients out there that are getting it harder.

I do hope my ramblings help

Hi

I really admire your positivity!  You are inspirational!  So many people will benefit from your words.

Hope you are doing well.

Sue x

Thanks for your thoughts, I understand completely where you're coming from and in essence agree. But I am hesitant because I was also hospitalised for 9 days and was put onto a high dose steroid to counteract the effects. So it's taken nearly 2 months to come off the steroids before I can even consider any more immuno and in that time obviously the original dose was not having effect because of the steroids and now I have a delay in treatment. So if same thing happens again, the combined treatment is not worth having because its not doing anything

. Hence the dilemma of feeling I need something I can tolerate and have no idea if reaction next time will be as bad or even if I'll react at all. When is your next dose? Would be really good to hear how you get on with it.

Thanks again, and good luck x

I was put on high steroids in November, and now having trouble breathing, I’ve had two chest X-rays but they said that the problem wasn’t in my lungs, which isn’t helping me walk around. 

HI - I thought I'd just respond to confirm that after completing the course of combined Ipilimumab and Nivolumab therapies late in 2021, and now being on a four-weekly maintenance dose of Nivolumab, I have managed to tolerate the drugs without too many side effects.

I know this is of no help to those of you who have suffered as a result of the drugs, however I thought I'd just let potential future patients know that not everyone has the side-effects mentioned in other posts here.

I say that slightly hesitantly, as my immune system has not only attacked the cancer which had spread to my lungs and liver (and as at the time of writing seems to have disappeared), but also my adrenal glands, with the effect that I'm on life-long hydrocortisone tablets to ensure my cortisol levels are adequate.  Who knew how important cortisol was?!!

That said, if that's the only side-effect (and I know it may not be - there's a long way to go), that's a price I would have willingly paid before starting the treatment.

From what I have gleaned, it's very much a lottery as to how people's bodies respond to the treatment.

Anyway, good luck and best wishes to everyone.