Enfortumab vedotin and pembrolizumab

oh Tracey my heart goes out to you. you will need some time to absorb and process this news. I dont have any experience of these treatments ,but I have seen others on this forum who have had it. I hope they join soon to give you more information of what the treatment is like and if there is anything you need to be doing. When will you start it ? Is there an option of surgery ? Hold tight my darling and in a while you will pick yourself up and begin the fight again. sending you all my love and keep in touch x

Thanks my lovely, I just cannot believe it at present. I know it will take time, I haven't really got the words tonight but thanks for that love and hugs it is certainly needed today. Xx

Hi bumblebee49.
Your description of a bladder cancer recurrence in lymph nodes after a few years clear, and then being offered Enfortumab vedotin and Pembroluzimab as a treatment plan is my area of expertise!

I was in your position in 2022 and joined the clinical trial EV-302, which was trialing EV with Pembroluzimab. My oncologist also stated this was non curative treatment.
Well, I’m still on the trial and my regular 12 week CT scans show NED ( no evidence of disease). I have had plenty of side effects over the years and currently am on a treatment break due to peripheral neuropathy, but I’m still here!

I can answer any specific questions you have either on this chat or privately.

But please try and be positive. The results from the trial surpassed expectations and I know EV is now available on NHS which is maybe how you are getting it. When they told me it was non curative treatment, that was based on not a lot of historical data and even now they don’t have much as only 450 people worldwide were on the EV arm of the EV-302 trial.

maybe it is curative?

cheers,
Chasam

I really don't know what I could say to make things easier for you, I mean obviously I can't. But that is awful news after 3 years of being all clear. 

Sounds line they have a positive plan to manage it so that's of some comfort i guess. Hope the treatmemt goes well and you can tolerate it all well. 

As has been said my heart goes out to you. 

Thanks Simon C25, yes it's a big shock and I am still getting my head around it. I too hope I can tolerate the chemo and immunotherapy treatment. There are a lot of side effects. This just wasn't in my plans I thought I was doing well. 

Going to go off to Noth Norfolk to Blakeney for 5cdays try and clear my head with my husband, who is feeling just as bad. 

Will just have to try and get on with it, life has thrown a curve ball unfortunately. 

Best wishes

Oh my god thank you for reaching out to me, this is what I need to speak to someone with experience of what I am going through. 

I will definitely be asking you questions, I am not sure what yet but you have just given me a light at the end of my very dark tunnel. 

Yes it is on NHS, doctor said she wouldn't have been able to offered it this time last year so that's a positive. It's just been taking so long to get here with the diagnosis and now waiting for treatment to start. Within next two weeks. 

So are you still having the treatment all these years on?

I am so please you are showing ned. Yes maybe a private chat would be good. 

Not sure how we organise that, is it via email?

Once again you are a god send x

I will say the side effects seem scary, skin rash and many more. I have read some of your blog at beginning and see you had bladder out as I was advised but I opted for the 3 year bcg route. 

Hi,
Yes, I’m still having treatment but only EV now as you can only have Pembro for 2 years I think. Last cycle was 6 weeks ago. I’m going to see my oncologist today ( in Charing Cross hospital - London) to see if I resume or have another 3 weeks off.
The side effects aren’t that bad; they come and go and just need managing. I live a brilliant, active life with my NeoBladder and ongoing treatment.

I’ll send you a friend request and then give you my phone number and when you are ready, and if you want to, we can have a call.

cheers,
Chasam

Thanks so much and great to hear you are living a brilliant life and are active with on going treatment. This has made my day and it's only 7.00am.

I am under Guys hospital. 

Hi Tracey,I’m having problems sending you a private message.I’m so glad Chasam has given you some light.I hope you can enjoy your trip to Norfolk.Love Jane xx