Confused

Hi sorry you have had to come here.

All i know, they have to give 3 months of immunotherapy, to see if it starts to work. That is what i was told, when i was put on it, and some times the cancer can  grow slightly after first one, then starts working.

You should phone your nurse and explain to  them your confused, and need some clarity on the situation, for your own peace of mind.

Hope other come along, i am sure they will and advise you.

Please  carry on using the group, we are all incurable, i am sorry to say.

We understand what you are going threw.

Thanks elle. I have left message for macmillan nurse to phone me. She is the one I trust to tell me what is next step.

All good wishes.

Hi Oak2 

I'm sorry to read of all that you are going through. I have incurable endometrial cancer myself but I am currently stable and not on any cancer medication. You are very welcome to read my profile by clicking on my username. 

I have been advised that immunotherapy is not suitable for my type of cancer so chemo is my only line of treatment. I was advised that I can have chemo again due to the length of time I have been stable for. However, I was told that with each course of chemo, it's effects diminish until it doesn't work.

I would suggest ringing your oncologists secretary and ask if she could pass on your queries and feed back to you or if she could arrange another appointment for you. 

You could also ring the Macmillan helpline for help and support. This is the link to contact 

https://www.macmillan.org.uk/about-us/contact-us

There is an option to speak to a nurse or there is the Ask an expert service, this is the link 

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert

I hope you can get some answers and a plan for going forward. Best regards.

A x

Hi Oak2 and a warm welcome to the forum though so sorry you find yourself here,  sorry II can't really add to sistermoon's  post but you have my best wishes in finding a treatment that works for you,  take care  

Eddie 

Hi Oak2, Just wanted to welcome you to the Group! I can't add any more to what Ellie & Sistermoon have already said but I am pleased to read you have already called your nurse for clarity.

please let us know when she calls you back and what she has to say! Good luck!q

Hi Oak2  Sorry to hear your situation. I find sometimes the information we are told can be misinterpreted as we are at a very vulnerable point. I think rehearing the facts can clarify the situation sometimes . I wish you all the best and hope you get some treatment . Regards  Minmax

It is really hard to take everything in when the oncologist delivers terrible news. For bowel cancer , immunotherapy can cause pseudo progression in the first 3 month scan. Is there any other markers they can measure to see the effect other than CT scan? 

I would definitely email the oncologist “s PA and maybe ask for another consultation. Take care 

Stella 

Hi Stella2020, and a warm welcome to the forum, not one you or any of us wanted to join. I am so sorry to read your diagnosis, cancer is a cruel disease especially to younger people like yourself, but I hope you find the kind people here as helpful and supportive as we all do, offering advice, somewhere to let off steam or have a rant, a place to have a chat or a laugh or a shoulder to cry on, with the ladies "and a few guys", who understand what you are going through and the emotions that come with a terminal diagnosis. you will also find some inspirational stories from those who are still with us many years after their prognosis. my best wishes with whatever your next step may be.

Eddie xx

Thank you Eddiel. I have sent in an introduction post and is yet to be approved. I am looking forward to read and posts among people who truly understands. 

Hi Stella2020, you are welcome, yes our forum is a little different to all the others so applications are carefully vetted, but yours shouldn't be long. and please call me Eddie, It's lovely to meet you and please feel free to ask me or anyone on the forum anything, as our forum is unique there isn't much we can't talk about, we even have one thread, the lovely morning chit chat thread which is a light hearted, often humorous talk about everyday things, and a good place to meet the guys,

Edie xx