When the treatment stops working

  • 8 replies
  • 43 subscribers
  • 628 views

Things have been a little up in the air over the past couple of weeks, and I hope you don't mind me sharing, 

Dal has been told that the treatment he has been having, which was doing so well, at keeping him so well, has finally stopped working. Actually the words were "it was bound to happen eventually, but haven't you done amazing" certainly for us, he has had a bit of a miracle run. 

The reason for my post is to find out if anyone has experience of Treatment Trials? I would love to hear some of your thoughts on the experience.. We are not sure yet whether Dal will get on a Trial, but we have to hold on to hope, and keep positive. 

So I thought maybe it would be OK, if it became my time to post again. 

Lowe'

  • Hi Lowe'

    I'm sorry that the treatment has stopped working.  I'm new here, though I was diagnosed in 2021. I have read all about Dal's treatment and everything you've both done to complement it; you are both such an inspiration, and your messages of support to everyone on here are wonderful. 

    I don't have any advice about trials, I hope someone else can help with that. I just wanted to say I'm thinking about you both and sending positive thoughts. 

    Amanda 

  • Hi Amanda, 

    Thank you for your kind words, 

    I hope that you are managing as best as possible with your own diagnosis, it's great you found us at the forum, and that you have managed to read our Blog, I hope it helps in some way. 

    Dal continues to be really focused, in fairness, I think I am the one that is doing the stressing, where as he seems to take everything in his stride.  Thankfully, although this particular treatment has stopped, for Dal, there is other treatments that he can be offered, currently they are just looking at the best of those options, one of which may be a trial, but we will know more in the coming weeks. 

    The amazing thing is, when Dal was first diagnosed this type of option was not available to him, so this just goes to show the progress that has been happening in understanding and treating this type of cancer. 

    Look After you Amanda, and thanks again. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi - I don't have this cancer, I'm a member of the kidney cancer group, but I'm on a trial.  I didn't need to go on it, my current immunotherapy was working fine, but I ticked the trial boxes.  I saw it as "tomorrow's drugs today" and to help people in the future to progress research/treatment options.   I didn't see it as a risk as there are a lot of prior tests before a drug can be approved for trial.   My oncologist has another trial he has suggested I may be suitable for in due course, but it's still undergoing development.  

    I think the perception is, that people go on a trial as a "last resorts" approach when other treatments have failed and they're at the end of the official NICE approved road.

  • Hi Mmum

    Thank you so much for responding, I was really asking because I am unsure whether the ways the patients are treated are in anyway different to when people were receiving their previous treatment. 

    We do know that the oncologists are really impressed with how Dal has reacted in the past, and they do want what is best for him, but the possible trial is a dual arm trial, so we won't know until it starts whether he will be placed on the new trial drug, or on the mix of drugs which would normally be offered at treatment at this stage. 

    The most important thing is, there is still options, there is more treatment and there may well be more trials. 

    You are right in what you say, "Tomorrow's drugs today" I hope that you find they are working well for you. I wish you every success.. and again, Thank you very much for responding. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Oh I see!!!  I absolutely know what you mean about the multiple arm trial where one is "standard" and the other is the new option being tested.  That's a trickier decision.  

    Regarding your other point, at my place, trials are in a separate wing, separate from the day unit.  I feel like royalty.  There's no hussle and bussle, hardly anyone there when I am there, very few beeping machines and I've not seen an emergency yet.  Fewer staff so I have actually got to know their names. 

  • Ah, that is great, it is nice to be treated a bit special, and with less of the hustle and bustle of the other cancer wards. 

    It really is important I think, to highlight the amount of trials that are available, and without people agreeing to be on those trials we would never move forwards in finding the treatment that allows some to maintain a healthy way of life whilst living with cancer.  

    Thank you for being one of those special people Hugging

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi Lowe'

    Coincidentally I'm on a trial too (but it's closed now and wouldn't be of any use to Dal so I didn't mention it). I agree about being treated well. I had my first chemo on the chemo ward which was frantic and although the staff did their best, they were so short staffed that everything was running hours late (this was covid times) and the next 3 in the trials clinic which was much smaller, more relaxed and I got more personal attention. Being on a trial helped when booking appointments that related to the trial - after the chemoradiation I had to have a gastroscopy every 3 months (that wasn't part of the trial so didn't get preferential treatment) and also alternating either a CT scan or PET CT scan - which I did get booked in for very quickly as they were part of the trial. 

    My trial was dual arm, testing some patients to see if a higher dose of radiotherapy was beneficial. I didn't get randomly chosen for the higher dose so I had standard chemoradiation treatment but had the benefits of being on a trial. I have a research nurse who is part of the trials team who I ring for anything. When they offered me the trial we decided to go for it because it would hopefully help people in the future. I had and still have mixed feelings about not receiving the higher dose radiotherapy but so far I'm doing really well. 

    Not sure any of that will have helped at all! 

    Amanda 

  • Hi Amanda

    Thank you for this information, it is interesting to read your experience, and it does help, certainly to know that it is absolutely normal to have mixed feelings. 

    Currently Dal is going through pre-tests to see if he is fit enough to go on a specific trial, which like yours is a dual arm trial, and we will not know until all tests and biopsy's are completed and confirmed as satisfactory, which arm of the trial he will be placed on. 

    I suppose I have mixed feelings, the positive one is that either way there is more treatment for him.  Then there is the, what if he doesn't get on the trial drug, and the what if he does (double edged sword scenario) followed by the what will happen if it is only the treatment that is already available and how will that help, especially as he was not put on that treatment when first diagnosed? 

    We have lots to consider, and it was important for me to know that the professional treatment he receives will be less stressful than some hospital experiences have been in the past. 

    Thanks again, I am pleased to read that you are doing really well, that is almost all we can ever hope for . 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!