Any advice welcome

Hi All

My husband has been receiving Immunotherapy for NSCLC for almost a year to the day.  The scan before the last one was so positive and his tumours had shrunk my half.  We had the results of the last scan last week and they have started growing again and now in both lungs.  Because of this they cancelled his treatment last Saturday.  We have an appointment tomorrow with the oncologist to discuss Chemo.  I'm a bit confused because when we received diagnosis, they said that he wouldn't benefit from Chemo and that's why he had Immunotherapy.  Has this happened to anyone else ?  Can anyone give me an idea of questions we should be asking.  i have a few but i don't want to miss anything.  thank you x

  • Hi Daisy, I am sorry I cannot offer any advice as I have not had chemo or immunotherapy. I just wanted to say how sorry I am to hear that the immunotherapy has stopped after a year. This must have been devastating for you and your husband. 

    I think you will have seen your husband's consultant by now, so I hope you have some better understanding of what is going on.  xx 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou
  • Hi Chelle,

    Thank you for your kind words.  We were devasted.  My husband starts chemo in around 3 weeks.  It's palliative and the hope is that if it does it's job, we will have a few more months rather than years as we were first told.  At the moment, you wouldn't know he has cancer and thank goodness he has no pain just shortness of breath when he does something physical.  For me, I think it's about making memories.  Hope you are doing OK xx

  • Daisy-21

    i am so so sorry you kind yourself in this situation. I live in Nottinghamshire and was diagnosed December 2021 with NSCLC. My treatment plan was put in place jan 2022 I’ve had 4 cycles of chemotherapy and immunotherapy combined and from end of April I have continued with immunotherapy on 3 weekly cycle. I’ve had some down days since commencing treatment but overall it’s not been to difficult. I know everyone’s cancer is different and therefore their treatment plan is designed to fit the individual.

    my advise is go along and speak to the oncologist listen to what they have to say and make a list of questions you want to ask, don’t worry to much if you leave the consultation and think of additional question you want to ask just give them a call and ask to discuss the additional questions, it doesn’t always mean another trip to hospital it can be done via phone or video link.

    I am happy to answer or explore any questions you have and if I can help I will

    take care and hugs for now

    Donna xxx

  • Hello Daisy I'm so sorry to hear your news. I can't really give you any advice as I've never had any chemotherapy or immunotherapy. I feel for you and fingers crossed your husband got the right treatment when you saw his oncologist last week ?

  • Hi Daisy.  I'm so sorry for you both.  I'm pleased to hear that your husband is not showing signs of cancer to others  but it must be very worrying for you both.  I haven't any answers I'm afraid but I myself am coming to terms with having a benign meningioma in my head above my brain...

    My close family and boyfriend and friends are very supportive and I know I can request further information from my consultant via his secretary.   I have my second scan in June,  so I'm quite anxious but trying my best to keep positive. 

    I Wish you and your husband all the very best. Take care.  Jane x

  • Always here for  one another.  Keep positive and look for that rainbow in the sky.

  • Hi Daisy, I know how hard this must be for you both. The chemotherapy does give him a chance though, I’ve always said where there is treatment, there is hope. Lots of people have done far better on treatment than they or their consultants ever thought possible, so don’t give up hope.

    Xx 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou
  • good to know, thank yo Donna xxx

  • there is always a rainbow xx