Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Immunotherapy Pembro trial

Shazzam69
Posted by

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

KTatHome
Posted by

Hello , I hope you are well and don't mind me butting into your kidney discussion. I noticed your post as I have been on Pembrolizumab for metastatic melanoma.There is another post from a few days ago from asking about the same trial I believe, in this post trial of adjuvant pembrolizumab.

I just thought it might be good to get you both talking together ! just click on the link and you could think about replying to him to discuss.

Best wishes

KT 

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Shazzam69
Posted by

Many thanks for that I’ll try navigate my way there! 

mark60528
Posted by

Hi Shazzam69,

I have recently agreed to sign up to the same trial. Like you I read through the material and took my time considering wether to take part. I also came to the same conclusions and reasons for wanting to go ahead. I am at Charing Cross hospital and just yesterday had the full CT scan followed by the bone scan week after next at Hammersmith hospital.

I have a niece working at the Royal Marsden in London as a speciality cancer nurse. I had a chat with her about this and she checked with other senior colleagues, the result of which she agreed that my decision to go ahead based on the more active monitoring was a reason to go ahead. Of course you can leave the trial at any time if you feel it is doing more harm than good and your body isn't coping.

I think I am due to start first treatment on 4th July.

If you want to chat further please just drop me a line.

All the best,

Mark

mark60528
Posted by

Hi Shazzam69,

Just wondered how you are getting on with the trial. I have had 2 treatment cycles so far. After the first it left me with muscle aches but after a while it eased, However after the second about 10 days ago the muscle aches are worse and still feel stiff and uneasy especially after getting up first thing in the morning. Next session with the doctor is on 27th so will discuss with him. 

Regards,

Mark

Shazzam69
Posted by

Hi Mark, I had my second treatment yesterday. It’s been a bumpy few weeks with me being admitted to hospital with hypothermia. I’my temperature is crazy at times. Im very weak with sore muscles like yourself. I’ve to go back Monday to have my adrenal gland checked as this can be affected by immunotherapy which may be why I’m so tired and drained. I had irregular heartbeat last week and generally feeling faint. Hoping it all settles soon. I’ve to get a picc line which I’m not looking forward to but my veins are terrible now so no more prodding about to find a vein for the next ten months! Hope you’ll settle as well once another one is done. 

mark60528
Posted by

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