Immunotherapy

Hi BrenW welcome to the forum. I dont know a great deal about this but I have a friend at present who is having Immunotherapy and she says it is pretty grim with not very pleasant side effects for her. She is able to get out for a walk and is keeping away from social gatherings to give the meds the best chance of success . That said about side effects the Consultant had prepared her before starting this by letting her know the side effects so they didnt come as a shock or surprise while still not nice. I feel sure that one of the lovely folks in here will be along soon to offer more detailed experience and further.  

Thanks Gail, I've been here for a while but a little quiet lately as I thought I was on the road to recovery! 

Hopefully someone has some advice soon. 

Do Macmillan have any info re Immunotherapy? You could try giving them a call 0n 08088080000. Xxx

I don't know why I never think of calling them! I will give them a call in the morning- thanks for the reminder!

The other forums you might like to pop onto is the lung and the melanoma forums as they have been using them for a few years now and have quite a few posts about side effects .

I looked at them when my friend was on it . She had it with chemo and managed well despite being on both but harder to separate what was causing the side effects .

Take care and all the very best. So sorry to see you back with this bump on the road. You could also read Moi2   Page . She is our poster girl for immunotherapy .

They also seem to be using it for some patients prior to surgery now so good to see the progress coming through .

I wish you every success .

Court 

Thank you Court x

I don't have personal experience but since no one with that experience has replied, I will share what I know. 

My brother-in-law was on immunotherapy for 4 years. Side effects for him were mild at first but grew worse over time. He ultimately stopped it due to side effects.  But he got 4 years of good quality life out of it as well as shrinking his tumors. 

My adopted sister was on immunotherapy briefly. I'm a little fuzzy on the details but it was causing problems detected in her bloodwork which forced her to stop. However, the side effects she noticed were mild. 

So it really is a very mixed bag. 

Thanks so much Susan, it doesn't seem to be a very common treatment so I am struggling to find "practical" advice

Hi BrenW I had immunotherapy for nine months I had Pembrolizumab via an infusion each three weeks and compared to chemo it was very easy I had general fatigue but other than that nothing and was able to function and work without any problems. Unfortunately for me it stopped working and my disease spread so I am now recovering targeted therapy. Good luck with your treatment x

Thanks so much, that's reassuring to hear!