Immunotherapy

Hi Carol

I'm going to private message you on this following my battle so will request friendship shortly

Paul

Hi - I have added you as a friend 

Ok it's not updating on my side so will check in a bit

Still showing as awaiting ..can you check

Hi Carol A - welcome to the forum.

My profile gives some background on my treatment, however I thought I'd respond as I've been through the Ipi/Nivo route.

First of all, immunotherapy can sound daunting, however (in my personal experience), it was a relatively straightforward process with few day to day problems.

The combination treatment seems to be a struggle for some patients, but certainly not everyone. In my case, I had some minor fatigue the day after treatment, but that was about it.

I then followed the combination treatment with Nivo at four-weekly intervals for around 20 months or so. Again, no significant daily side effects.

The one long-term side effect has been the failure of my adrenal glands - this has resulted from my immune system attacking them, after it got a bit over-excited by the immunotherapy!

This is serious, however is managed by daily low-dose steroid tablets, and the up-side is that the same excitable immune system has destroyed the cancer cells.

Not a high price to pay!

The actual process is simple, and doesn't take too long. You'll soon get used to lots of needles ( blood tests and infusions), plus scans, etc., and get into a rhythm. (I can't comment about treatment when working, as I was in my early 60s when diagnosed, and had a prognosis of up to 12 months survival without treatment, so not surprisingly retired straight away).

Hope the above makes sense & gives you a little background on what to expect.

All the best & good luck!

Thank you Emo

tbat is very helpful.  I too was diagnosed just before my 61 birthday and have had many scans and drips so far.

inhope that I have a journey similar to you.  I did well on targeted therapy with only a few minor side effects so hopefully that will continue,

I was told on my original diagnosis that without treatment I would have a couple of months to live so treatment so far is doing well for me.  I am now 5 months in and still fighting. 

thank you for your help and good luck with your own journey.