Hi all, I had my left kidney removed 5 weeks ago with grade 3 tumour. Had horrible wound infection which has only cleared up. Yesterday I attended the Beatson hospital to find out my care plan and have been offered to take part in a trial. It’s too much to type so I’ll attempt to copy and paste a mail to a relative into here. I’d like to hear if anyone has heard of this.
So got bloods done them very thorough meeting with consultant. They have a trial which half of trail-lists are given a placebo drug, such as water! I was told there’s 3 categories of cancer returning, low, medium and high. Of course I’m bloody high risk!! So if I don’t take part in trial I get scans every 6 months. That’s it because chemo doesnt help kidney cancer as it’s gone but high risk of other kidney getting it or just anywhere in body as dead cancer cells evident. After what I had the immune system is gubbed but the trial is called immunotherapy phase 3 placebo controlled trial of adjuvant pembrolizumab in renal carcinoma post nephrectomy. A mouthful! Anyway if I agree to trial I might be given drug and might be placebo no one finds out not even him unless I have problems. There’s a lot of bad side effects as can turn immune system on itself instead of kick starting immune system which it’s meant to do to fight of any other cancer. Risk of brain problems, diabetes, hole in bowel leading to death of I dont go to hospital immediately with blood in stool or very loose stools ? So was loads to consider but I’m doing it as trial people whether placebo or not get 3 monthly scans for two years then 4 monthly scans for another 2 years then 6 monthly scans until ten years is up. Only 1000 people worldwide from Europe, US and Australia are selected for trial and I was picked as younger than most with kidney cancer so longer life to lead and high risk of cancers anywhere coming back and hopefully this would be picked up in scans immediately if I’m placebo and if proper drug then it’d help fight cancer cells anyway. Every 3rd Thursday I’ve to go to beatson for assessment and the day after I’ve to get one hour intravenous treatment of either the drug or placebo. I’ve to get CT scan from head to toe before starting which I’m pleased about as I’m paranoid cancer is hiding elsewhere because of this pain but he said I’ll be in pain for 6-9 months post op. I’ve to go to Ross hall to avoid waiting lists for bone scans to check for cancer and other CT scans can’t remember what. Loads and loads to take on board but I go back a week on Monday we are away next week he wanted to see us but said he will guarantee place on trial for me. Appointment is to give my consent as legally I can’t give it for few days until I read about side effects and risks involved. I told him I just want to live and survive this and any other cancer so I’ll def go on trial whatever it involves. So I’ll be well looked after much more regularly and closely than if I do t go on trial. I want to make sure with high risk cancer will return that they can detect it immediately and deal with it. I’m scared but determined I’m going to beat it. To go back a week Monday to sign up for it all x
Hi Shazzam69,
After my second cycle treatment I have also been hit with further weakness like yourself. Today I was due to have my third cycle treatment but my recent blood tests revealed low thyroid activity. Th
reminded me of your situation and could have been your eventual diagnosis. I am back tomorrow to pick up medication for the thyroid problem when they should know which hormones are not being produc in sufficient quantity. Really have felt like quitting the trial recently. Hope you are feeling better now - I was told the symptoms do improve with time .
Best regards,
Mark
