Not sure how i feel

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Well, saw my oncologist today... and she told me that we will stop my Immuno therapy today!!! 

I get it now since August 2016 ...and i know it was coming. 

But i'm not sure how i feel...okay she did say when i asked we can start it again if the cancer grows but i did not make me feel much better.

I will have a CT in 4 weeks and then i only will see her every three months for new ct scan...just a weird feeling.

  • Hi Pet

    You have been on a long while, i was only on it 2 years.

    Mine stopped 2018, and i only have three monthly scans, Though in 2020, i had a slight growth and had 13 sessions radiotherapy.

    I have asked my oncologist, what happens, when it starts to grown again, my first biopsy was retested and i will get target therapy,.

    Because of the fractures i got in my pelvis, and they said if that was cancer, i would get radio again, you can have that any where, though not to the lungs again.

    If fact i my 3 monthly appointment has turned up again.

    Just a different routine pet and another load of crap xxxxx..

  • I understand exactly what you are feeling Pet.

    my treatment was paused last year after 5 years. I thought that was going to be my lot and on the downward slope but you do get used to the idea.

    they know what they are doing, it’s all part of a plan. If they were not comfortable and confident with it, they wouldn’t do it.

    things will look different in a while.


  • Hi - I get this!  When I started I thought it was for life!  Then about a year in, I realised it might be for 2 years only.  But I remembered analysing the results of an immunotherapy trial and it showed that breaks in treatment didn't alter outcomes and that after 2 years all the benefit has been gained.  There is definitely a security blanket inherent in the "receiving treatment" status which makes it a bit tricky to "let go".  I discussed it with my oncologist to prepare ahead (I have to keep one step ahead of this b****r!) and he said the big milestone to aim for is 2 years.  Once you reach 2 years the outcomes are a game changer.   But I agree it must be a big re-adjustment.  

  • Hi Pet, Yes I too know exactly how you feel. I was on a trial for Target Therapy for just over three years. In that time I had a few breaks from the drug due to side effects but always started back again. The last time I came off it  was Sept 16 and although my oncologist said if necessary I could go back on it, depending on the 3 month scan results, she also said I had the option of Immunotherapy which was coming to the end of it's 2 year trial and had good results. I felt as if I was in Limbo! I had (& still have) some horrendous side effects from the trial drug but it saved my life. After a long discussion with my Oncologist, it was decided we would watch and wait and only start back on treatment IF it was necessary. I was on 3 monthly scans with an appointment to see my Oncologist for the results. I remember the first few scans and waiting for results were nerve wracking but I soon started to get used to it. Then when I reached 5 years after that, she suggested we move to 6 monthly scans and appointments! Last year in September during my results appointment she said it will be 10 years since diagnosis next May  so it is time we moved to Annual scans and Appointments! So my next scans are September. She explained that having too many scans can cause their own problems, so that was agreed!

    I still continue to go to Dermatology every six months and they have removed some suspicious lesions over the years, so that makes me feel I am being kept an eye on. I also attend the Liver clinic every 6 months ( a drug side effect) so I don't feel as if they have deserted me just yet but one day, possibly soon, I suppose I could be discharged. Which would be amazing and frightening all at the same time.

    I am sure you will soon settle into your new routine and as Branstonpickle aah's said, they do know what they are doing so you have to put your trust in them! This is progress! It just feels strange to start with but it is good not to be running back and forth for scans all the time! You will get your head around this soon, I am sure!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!