Deciding versus 'Surveillance' treatment and Immunotherapy

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I'm wondering if there is anyone on here who has decided to decline immunotherapy and opt to be regularly monitored instead.

I am still recovering from an adrenalectomy a few years ago, and it is one factor which makes me want hesitant to begin immunotherapy.

  • Hello Khunter

    Yes, I decided to stop immunotherapy after a couple of serious side effects, one of which stopped my adrenal glands from working, so I'm permanently reliant on steroids to keep me alive. My cancer is advanced and incurable, so the immunotherapy was palliative. I am being monitored by scans every 3 months.....after a year of immunotherapy, which worked, my cancer is stable, and has been since I had my last treatment session in July last year. I am waiting for my latest scan result, and hope it is good news. I think my oncologist is planning to offer me different drugs if the scan shows progression, but I'm not at all sure if I want to try anything else.

    I did not reach my decision lightly, and it is not a decision that many people make. I am 64, without children, so I do not have any worries about leaving dependents. I am fortunate that my cancer hasn't had any symptoms (so far) so I am able to live my normal life, with a small decrease in my overall stamina. 

    I would suggest talking things over with friends, family, maybe a counsellor before you decide. It is a major one! 

    My motto is that I want quality of life, not quantity at all costs. Although most of my friends and family don't agree with my standpoint, they do respect it, and support me going forward. 

    I hope you are able to find peace of mind, and some certainty, whatever you decide to do!

    Best wishes


  • I'm stopping my immunotherapy next month.  My mantra is "got to stop before I get a significant immune related event".  I've had the benefit after 2.5 years.   I'm content with pocketing the benefit - reaching a balance between the benefit and what may happen going forwards.   

    I do think immunotherapy is an excellent option.  However, it is a significant drug and there are occassions where you can't just rollback, or stop taking it to return to your previous position.  There are people sharing examples across the forum.   I have a kidney function of a 90 year old for example, which is a pretty good hit  for the benefits I've experienced.   But that is very easy to say in hindsight. 

    Please ask lots and lots of questions to ensure you are comfortable with your decision.  

  • Hope you are doing well  Mmum

  • FormerMember

    Yes I have. My friendly oncologist and nurse confirmed my post-op scan was clear of cancer and gave me the info about receiving Pembrolizumab as adjuvent immunotherapy. They didn't really give me any more info that I didn't know already, just confirming percentages without and with treatment, 86% versus 91% survival after 4 years, 35% versus 25% chance of metastatic cancer re-occurrence over 3 years. There is an 18-20% chance of major side effects and I have been given a pamphlet detailing them. Minor side effects are more probable. They did not recommend me to accept or refuse and left it for me to weigh up the pros and cons, just saying that Pembro is the first ever treatment that has had a positive effect on RCC patients, and to bear in mind that I am high risk. They took bloods and I was given 3 days to make a decision as they did confirm that immunotherapy has to start within 3 to 4 months after surgery.
    Due to those statistics and possible level 3-4 toxic side effects, plus my personal circumstances (living alone and no family), and needing to be fit and healthy for driving my employer's vans (which even the minor side effects would impact), and wanting to enjoy good times away on holiday (travel insurers don't tend to cover immunotherapy), then I have decided after a good month of deliberations NOT to have Pembro and opt for routine monitoring/scans and then deal with any issues that may arise from that. It may turn out to be a wrong decision but I feel good right now and want it to continue even if it doesn't last as long as I hoped.
    Friends and neighbours have agreed with me that it is a tough decision and they are not sure what they would do if it were them as everyone is different, but they generally have supported me with my decision and the reasoning behind it, as did the oncologist when I told her, and she wished me well and that hopefully I would not need to see her again, but if I do then there are a number of treatments available.
    So I will see what happens going forward, and I will get on with things as normal as I can now waiting for the next scan and results later this year, which hopefully will still be clear. For the time being I will leave the community and wish everyone all the best of luck in their cancer journeys. Brizz.

  • Good luck , ye it seems what was said to you mirrored what was said to me in effect. I had my first treatment yesterday so watch this space on that one . !

  • Hi Phil, hope you’re feeling ok after your first treatment. x

  • Hi Cilla, ye had it on Friday and I do not feel any different yet Grin. I guess things will change over the next few weeks/ months

  • Oh that’s good. But not necessarily. You recovered really well after your operation so you might react in the same way to your treatment. I am pleased you have opted to have it. I would have done the same !