possible immunotherapy next step - any one with experience thank you

Well done you ! Let’s hope you get a decent break before more treatment Tricia x

so saw the lovely caring, informative oncologist today so Not!!, very dismissive, talked over me constantly, nurse was more informative than him, and language barrier which made it really hard to take in the whole short conversation!!, just thought here we go again with stoke.  even saw the lovely breast oncologist whos care i was under last year just wandering around, chatting for 30 minutes, then apologised to his patient for keeping them waiting!!, he was the one that dismissed my symptons of weight loss, no appetite, etc, husband advised against going over to say hello, and i am now recovering from the cancer symptons you pooh poohed, both of their attitudes was awful, i know they do this day in day out, but some of us dont!!.  and breathe, sorry folks

they made it sound it will probably come back so hence nivolumab immunotherapy, where my surgeon at churchill said it was more just added preventative insurance as he was happy that he had got it all out with the op.   talk about come out deflated. chalk and cheese experience.  immunotherapy is once a month for a year if no reactions, pretty much shoved another load of stuff to read about the treatment and goodnight!!

Husband even had to try and clarify several times when he was listened to that this was a preventative extra treatment, which they kind of agreed.  and scans every 3 months, so going to try and turn the cancer dial down, get in my pj's and watch some rubbish tv.  off early tomorrow to eastbourne to sort our our 90 year old aunties move into a care home so least a distraciton to make sure she is all settled and comfy.

thank you as always for listening, jules xx

That sounds like a horrible consultation. The immunotherapy that Rod was on was Nivolumab. To be in scope for this your cancer has to have certain properties at a certain threshold or the NHS won't fund it, apparently. I have read posts from someone else who's only on Nivolumab now. I don't know what, if any, side effects there are. Rod's were mainly linked to the FOLFOX, according to the oncologist. 

The rest of the MDT and nurses seemed as stunned as us when she told us she's taking him out of the trial, etc. One of the nurses phoned later to say how sorry she is to hear about it and that she and the others are there for us anytime we want. Similarly, the lead trial specialist nurse said we can call her at any time. 

Rod said he felt like the oncologist was dismissive and cold. Maybe they have to be when they have the horrible job of delivering bad news. 

Rod will have his chemo and bloods closer to home now, in the local hospital. Looking for the positives! He's got his sights on a peaky blinders hat. Oh my life!

thanks for that, Nivolumab is the one they said for me too, amazing how it can change from oncologist to oncologist, but same, back to local hospital so travel time much less, hanging around the same, peaky blinders hat sounds perfect birthday present, neil the hubs has mentioned another friggin surfboard he has seen, we have 6 already, that will never feel the touch of salt water, but if it makes them happy....

LOL  

Hello

I had immunotherapy last year (Pembrolizumab - 6wk cycle)

unfortunately for me it stopped working and I’m on chemo now. But I did complete 6 cycles.

i experienced sickness, hair thinning, really dry skin on my hands and feet, swollen joints and tiredness. All of which were treatable (although the thinning hair involved a change of hairstyle). For me the worst was feeling sick but with the right drugs that was fixed. The main advice I would give would be to let your nurses know any side effects asap so you can keep on top of them.

loads of people have super great results on immuno and have few side effects. I really hope it works well for you.

ps. My pembro only took about an hour start to finish for the infusion which is a huge plus. My chemo took 6hrs last time