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Immunotherapy 2 year limit

Angie511
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Hi all, I'm sorry I have nothing to point anyone in the right direction on the subject of what happens after you have used up your 2 year quota for immunotherapy, like many other posts I thankfully responded well to this treatment and let's not forget, sadly some people don't respond, I know because my friend didn't and sadly is no longer here. I did and my stage 4 renal kidney carcanoma is now showing as fluid filled cysts, alas my treatment is coming to an end...... I have felt really well and don't relish the possibility of it returning and not being able to get on top of it again. Good luck to each and everyone of you out there....... I have heard often that cancer can be managed to give the person many years of good quality life for which I am enjoying, free from tumors, feeling better than I have done in ages but now with the worry that if it returns I can no longer try a second time to treat if it returns but it seems not with immunotherapy because of the 2 year limit and I have used up my quota.

It would be nice to know that another shot at it would be available if it returns, for hope and mind health going forward.

 

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    Hello Angie511, 

    It's so good that you have responded to well to immunotherapy and your stage 4 kidney carcinoma is now showing as fluid filled cysts. This is truly incredible and you must be so pleased. I wasn't aware myself that there is a 2 year time limit for you to receive this type of treatment and I can understand why this is making you worried. I know it's really hard but try not to worry too much about it and to make the most of every single day, to focus on the fact that you are feeling really well at the moment.  If you feel this is making you very anxious, this is something perhaps you could discuss with your medical team. I am sure they will know exactly what happens if someone's cancer returns and they have previously responded well to immunotherapy. Do tell them that this is  affecting your mental health and making you worried and you would like to have some reassurance on what they would be able to offer you if there was a cancer recurrence.

    I am so glad that immunotherapy worked so well for you and that you are doing so well. 

    If you'd like to talk to our nurses about this, feel free also to give their free helpline a call on 0808 800 4040 - you can ring them Monday to Friday from 9am to 5pm.

    Best wishes, 

    Lucie, Cancer Chat Moderator 

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    hi I am in the same boat ,have just finished 2 years of immunotherapy and primary tumour shrunk 75%, have 2 secondaries, 1 in lung and 1 in thyroid.  Have a scan next week and a consultant appointment and then another scan in 12 weeks time . have been told for some people immunotherapy can cary on working and for others it does not , because the treatment is relativly new they are still finding out different things , I was diagnosed 3 years ago and was only given 6-9 months then i had immuno for 2 years , so i have now done 3 years and i feel quite well ,apart from the radio therapy which has damaged the top of my lung so have COPD , but looks like immuno is still working

    I wrote this post in Sept 2020 its now May 2021 tumour has shrunk by 99% I still feel fine and Doctors are amazed with my progresss and so am I , I have just had my PEG removed as i dont use it anymore , I also worry a bit, thinking could I go through all that again ,but just keep living and enjoying life day by day 

     

  • Offline in reply to Andy3266

    Hi Andy.  Just been given 18 months with metastasised prostate cancer and looking at Dentritic Immune Therapy by a private clinic called Immcura. Your outcome is very interesting. What and where did you get your treatment? Finding it difficult to get independant information. Thanks in advance.  Alan.

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