Hi, I am due to start this immunotherapy on 7 May and would like to know what experience people have had with it. I am stage 4 nsclc and this will be my fourth line treatment.
Hi I haven't seen you around for a while welcome! Although I have no experience of Keytruda or Pembrolizumab as it was known as when it first came out. I know a lot of people who had great success with it and not a lot of side effects, although they vary from person to person, everyone is different. I was put on the Target Drug Dabfarafenib as Pembro wasn't out yet but when the Immunotherapy treatment did start, it was far better than all expectations. I do hope it works well for you and I'm sure there will be replies in the morning from others who have had personal experience of this wonderful drug! Good luck! What hospital are you receiving your treatment during this difficult lockdown situation? I hope you don't have to travel too far!
Love Annette x
Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
I'm glad to hear you get to try pembrolizumab, it's worked really well for me. I know there's a wide range of reactions to it but I've found it really good. I've had an almost complete response to it, I'm hoping by now my brain met has vanished too as I've not had a scan since Nov but we'll have to wait and see once all calms down with covid.
I've felt better than I have for years and without a doubt pembrolizumab has extended my life for now.
I've had occasion issues with diahorrea but nothing too horrendous. I tend to feel a bit yuck on the day I have it so I now have an anti sickness tablet before hand but otherwise the main issue is fatigue and even that isn't too bad. Like chemo it's cyclical so week 1 is a bit slower for me but then I pick up and feel good before retreatment in week 3. In all honesty the worst bit for me is cannulation as my veins don't appreciate having regular intrusion.
This week I'll be on number 26 and initially I thought every 3 weeks was fine but now I'm 18 months in it does feel never ending and so as a mind game, that has become a bit of an issue as it does mean I feel like life can't quite get to a pre-cancer state. I know that'll make some on here groan but that's to do with the high bar I've set myself having faced my death and being very near my expiry with no offer of treatment to having a miraculous recovery with this drug and wanting to enjoy it as long as possible. I know I'm very fortunate in that although I'm told the cancer is likely to return. It's all a big mind game hey?!
Please do watch out for side effects though, they can be really nasty.
Please let us know how you get on. Be thinking of you.
Hi pollyalison, I had 4 cycles of pembro at the end of last year, it was the easiest cancer treatment I have had, an infusion every 3 weeks (although I think some folk move on to 6 weekly if it goes well). It did wipe out my thyroid, so now I take thyroxine every day, I think this is quite common but not the end of the world. I also got fatigue and it weirdly made all my scars really painful for a while but other than that, it was nothing like chemo. I know some people have really severe side effects so it is not to be sniffed at but a lot of folk hardly notice they are on it! i came off after 4 cycles as it did not work, but don’t let that put you off, my cancer is rare and it was clinical trial, I know it works well for lung cancer, so might be worth going on to the lung group to hear their happy stories! best of luck with the treatment x
I'm one of the few for whom Pembrolizumab didn't work, and who had a bad reaction to the drug, too. I had it last year as part of a clinical trial.
The first 4 treatments were a breeze - as someone already said, it was the easiest cancer treatment I've had. But after the 5th dose I developed immunotherapy induced colitis & wound up in hospital on a pretty hefty dose of steroids. Things kind of stabilised after 9 or 10 weeks, and I had a 6th treatment, but the colitis immediately started up again. I was taken off the trial at that point. A ct scan just afterwards showed that my cancer had progressed, too, so the drug wasn't working anyway.
7 months later, I'm still on steroids & still having colitis flare-ups. I also had a still unexplained reaction that had me in & out of hospital for much of January and February.
All of this is rare, though. Most people have far fewer side effects, and much better results. Pembro appears to be something of a wonder drug. It's just my bad luck that I'm the exception.
im on Pembro and have been since September last year up until my last infusion 3 weeks ago I had been on chemo as well. But as of last treatment I am now only on Pembro as they didn’t want me having chemo with covid etc. They can double dose too so I am now getting treatment every 6 weeks. I have had very few and mild side effects. Feeling well and not bad energy mind you can’t do a lot when your stuck in a house for 12 weeks!! The two scans I have had have shown stable - I’d prefer it to have reduced of course but I’ll take stable! Good luck xx
Hi , I’ve had I think 45 or 46 doses of Pembrolizumab for metastatic melanoma, I’ve lost count now. I started in April 2016 til April 2017 and as a complete responder was given the choice to stop earlier than 2 years. Complete response I think I read was 50/50 that a complete response would be long lasting, my complete response lasted 1 year. I restarted the drug in June 2018 when a recurrence showed in 3 lymph nodes, and as it had been in many others and my ovary previously instead of a groin dissection I went back onto Pembro for a year than had surgery as one node didn’t reduce and started growing again, received Pembro adjuvently after the surgery and my November and Feb scans have shown node enlargements again but biopsies have shown melanoma but also necrosis in those nodes and I’ve felt a physical shrinkage, so Pembro still working to hold things back, but not clear again yet. I’m on a coronavirus break, last dose was in Feb and the plan is to scan and restart in July unless a) I feel things enlarging again earlier, or b) my scan shows that I don’t need to restart as my body could show its coping on its own again.
Side effects really only tiredness, not bad enough to say fatigue, I am at half pace for about 4 days after each dose, which I just give into and do less, and then pick up the pace again. It’s pretty annoying writing off one week in every three with appointments and fatigue but I changed over to a double dose every 6 weeks, with no ill effects. My hair went all curly 6 weeks in and went back to normal 8:weeks later. I had an all over body rash 2 weeks after my first ever dose which also took every freckle away, it delayed treatment for one week and I was given aqueous cream and antihistamines to cope with that and to preempt for the next dose. I was given tablets for diarrhoea to take home as a common side effect but only needed them once. They stress how important it is to report all side effects to the hospital, fevers and chills are possible which might get confused with CV19, if you were to report anywhere else I believe. I’ve never had this but I expect you’ve read the long list of possible side effects like any other treatment. As this is your fourth line you might think this is a doddle, as it only takes 30 mins plus saline before and after so I was only ever in the chemo suite for 1hr (only once) up to 2 hours if they had cannula trouble and were also busy with others.
Good luck I hope it works really well for you, it’s certainly changed my original less than 1 year time line, my incurable diagnosis was in July 2015.
i had 2 years of Pembrolizumab for stage 4 nsclc, between jan 17 and jan 19. I had no side effects yet had a good response. Tumours shrank and I became stable after about 3 or 4 treatments. At my last scan in February 20 I was still stable. Good luck.x
It is so good to hear from you and to hear you have the possibility of some treatment. I really hope the replies here have given you a sense of hope. To hear from so many people that the drug is tolerable and works for them has cheered me up and I’m not even in line for this one.
The best of the very best of luck with keytruda. Do let us know how you get on
Hi Pollyalison, lovely to hear from you. It seems so long since you last posted. I hope this treatment works it’s magic for you. I have spoken to Sue (Skaila). She has been trying to get in touch with you since November but her eyesight being as troublesome as it now is has failed. She will try to PM you if she gets onto the big computer later.
