Starting immunotherapy

Hi Tarilan                                                                                                                                                                                                                                                   I was saddened to read your post,this roller coaster of a ride is horrible.The shock like you said after a good run must be soul destroying.My thoughts will be with you tonight when you tell your children,its a conversation no parent wants to have.My son is 29 and i dread having to tell him any news,and they are your babies no matter what age.I understand all the old fears and sadness coming back i am waiting tests and know how you feel. I havent got the same condition as you ( you can read my profile ) but i can sympathise. The oncologist seems to think positive thought are in order but i like you are finding it difficult at the moment to find any.Will be thinking of you keep well and all the best What a journey indeed Xx

Hi Tarilan, I’m sorry to hear that your needing to change treatment and all the uncertainty and anxiety that brings until hopefully that next scan when you can let out a sigh of relief that it’s working. Fingers crossed for you. 2.5 years that’s amazing. I remember starting Dabrafenib targeted therapy and being told the average length was 9 months and for me dead on 9 months my scan showed a spread to my ovary. I was so disappointed especially after finding someone on this site who was like you over two years plus on targeted therapy. I remember the nurse saying the silver lining was that I could now eat when I want, I can remember giving a big ummmm to that hating the thought of cannula instead of tablets. Weirdly when I’m worried about wether I will need to move back to targeted therapy at some point from immunotherapy I’m preferring to stay as I am. So I suppose I’m trying to say I understand how you’re feeling, the apprehension as to wether the new treatment plan will work as well, as I’ve been through that. 

I wanted to give a pep talk of the positive things, the sense of freedom of eating when you want to was a big one, and not worrying about taking tablets on time, but the prospect of having a very long “no evidence of disease” and being off treatment, was more than a big one it’s immense, so I hope you make it to that in a few years. 

I had to have a short gap between changing treatments when do you start ?

I hope the chat with your children went well, and that you have some positivity to start your new plan, which I know can be difficult at times, but feels so much better than the alternatives. 

Wishing you lots and lots of positivity.

Hi Tarilan

I had immunotherapy in 2015. Like you, I had two tumours. I hope that you are a responder, like me, and that your tumours shrink until you are NED. I have been NED for four years.

My advice is to keep you team in the loop about any side effects so that they are caught early and there is less chance of them interfering with treatment.

All the best