Metastatic bladder cancer

Hi Ariel and welcome t this friendly and supportive group although sorry to hear about mum. No personal experience of this new treatment but I noticed you have posted in another thread on the same drug treatment. I hope you have been given some comfort from the positive reports there and I am sure the guys will help here when they pick up your post. Best wishes.

Hi Ariel sorry to hear about mum, there are a few of us that have all just started this treatment recently so hopefully we will be able to let you know how we go. 

Chasam is the person that contacted me as he has been on the treatment for about 3 years or more and I hope he might respond to you. 

We are hearing that they are having positive outcomes so let's pray that this works for us all. 

Hi Ariel,
As Bumbleebee49 says, I have been having treatment for metastatic bladder cancer (pelvic lymph nodes) since October 2022, after have bladder removed in 2020.
I am still on the clinical trial EV-302 that introduced Pembroluzimab (immuno) and Enfortumab Vedotin (targeted chemo).

Before treatment started I was told this was palliative treatment and was not likely to cure me, but could keep things at bay.
However, 3 1/2 years later my latest scan results a few weeks ago showed NED (no evidence of disease). That has been the case for a long time, so maybe, just maybe, it is curative.

As that drug combination is still very new they really didn’t have, and don’t have, enough real world cases to determine what it can do.
Of course we are all different and have different cancers and/or stages of progression. However, I am certainly having a positive outcome.

There have been a lot of ups and downs to treatment, with various side effects, and I am currently on a treatment break due to peripheral neuropathy, but all are manageable and it’s just a case of balancing treatment with health.

I really hope your mum also has a positive response to this drug combination.

Chasam

Thank you so much for your reply. I actually can’t wait for her to start so hopefully she’ll start feeling better and be able to get to do more. It’s really good that you have responded so well. She is very nervous to start but I’m hoping that will ease once she’s had a couple of treatments. Thank you again for getting back to me x

I’m just in the waiting stages to hear what the plan is for me but really good to see this 

Can I ask if you lost your hair? We keep getting told different things x

Hi Ariel,
I was bald already, but what little head hair I had didn't go. 
But other body hair did go. Eyelashes, eyebrows, arm and leg hair.
As I've been off treatment for over 3 mouths now (due to neuropathy) it's all growing back. 

I appreciate head hair for a woman is very important. Your mum can use a cold cap while having her treatment. A lot of women do that so I presume it must help. 

Chasam