Hi Run4it , I just picked up this thread and I too am on this trial which I started in April 2019 so far I have had the blood tests and my next one is due in November. I took it up as I wanted to try to cover every angle I could. I am so sorry to hear that they have detected the tumour DNA in your blood and I hope that your scans are ok too. Thinking of you.
I've been thinking about you & wishing there was something I could say that would help. You're so young to be facing this, and with such tiny children, my heart goes out to you. (I was 64 at diagnosis, 65 now, and my son is grown.)
The good news in this is that you have been randomised to the Pembrolizumab arm of the trial. Everything I have read about this drug is positive. That's what I hang on to.
You're going to have an anxious wait whilst they complete the tests to make sure you can receive the drug. To me, it was like that initial period after diagnosis, when you just want to get on with treatment but you have to have tests and scans so the docs can come up with a plan. Only worse, because this is progression. My trial team did move quickly. I hope yours do so too.
And I hope you get the go-ahead for Pembro, and can join me in this period of calm after the storm.
Thank you so much AP7 and Sscruise for your kind words. Had my CT and bone scans this week. I’ve asked not to be told my results for a week as I’m taking my little ones to Disneyland Paris this week and didn’t want bad results to cloud my thoughts when I’m away with them. Only my husband knows what’s now happened and I’m absolutely dreading the thought of telling my mum and dad, sisters and friends. It makes me feel so sad the worry and sadness I’m about to cause them all. Just hoping my scans are clear and I can give them some hope too.
How are you on the Pembrolizumab? Are you able to carry on as normal? I work full time and regularly run and would love not to have my little ones know I’m on another medicine.
Hi. Where are you having your treatment? I'm at the Marsden in Chelsea.
I've been on Pembro since June, and had no problems till cycle 5.
Treatment takes less than an hour. I had no adverse reactions, so travelling home was never a problem.
The trial team monitored me very closely at first, just to be sure I wasn't developing any unwanted auto-immune response. My trial nurse phoned to check on me every day, and they brought me in for assessment when they were concerned. That happened twice. I was fine both times, but they wanted to avoid any risk.
Life went back to normal after that. Fatigue was a slight issue in that I needed an occasional sofa or duvet day, but that was all. I'm retired, but active. I was able to continue with gym sessions three times a week.
The problem came a week after my fifth treatment when I developed immunotherapy induced colitis. I spent 10 days in hospital on i/v steroids, then switched to oral steroids on discharge. It was a pretty extreme reaction & required a very high dose of steroids, and I'm still being weaned off them. And that, frankly, is much worse than Pembro! It's manageable, but it isn't fun.
More of an issue, given that my cancer is showing signs of progression, is the fact that I have to be on a much lower dose of steroids than I've yet reached before I can restart treatment. I've missed 2 Pembro dates so far. I'm hoping to be given the ok in 3 weeks time.
Short version? Don't worry. You've been through much worse. And you may not have a reaction like I did, or not so severe. And even that was and is manageable.
Glad you’re feeling better and hope you get back on Pembrolizumab soon. If you don’t mind me asking, what were your symptoms of colitis? Just so I know what to look out for too.
It was diarrhoea. Sudden onset, and I think about four episodes a day to begin with.
I have mild IBS, and we were travelling to Ireland on holiday that day, which can set me off, so I put it down as normal for me. But it was worse the second day, so I decided at bedtime that if it hadn't cleared by morning I would ring the helpline. I did, & they sent me to A&E.
I had no pain beyond occasional cramps, just the frequent running to the toilet.
