Neutropenia after two rounds of immunotherapy

Hi A_R, this sounds really hard for your mum and for you. I think if I was your mum I'd be glad to be tucked up in hospital where it's their job to keep me comfortable. Sending you love and strength. Sometimes we can't help. H xxx

Yes that’s some comfort that she is in the right place and they are keeping an eye on her. She was so torn between starting this treatment or not, as was worried it would really affect her quality of life. It’s hard to understand if this is the norm with this type of treatment, or if she’s just unlucky on this first couple of treatments. 

Hi A_R,
I’ve not posted on this forum for quite a while but read it regularly to see if my experience on clinical trial EV-302 can help anyone.

This thread title is immunotherapy, but you state your mum is receiving Padcev and Keytruda. Those are the 2 drugs used in EV-302 which I am still on. Padcev is the trade name for Enfortumab Vedotin (EV) which is a new chemo carrying antigen that targets cancer. Keytruda is the trade name for Pembroluzimab, which is the immunotherapy drug.

I started the trial in October 2022, and had both drugs for 18 months then due to immunotherapy side effects I am now just taking EV (Padcev).
I’ve had many side effects including itchy skin and upset stomach like your mum, but never heard of neutropenia so googled it and see it is a low white blood cell problem.
My treatment cycle is 2 weeks on 1 week off, and after the 2nd week I am given 5 injections of Filgrastim which I inject into my stomach. The purpose of this is to increase my white blood cell count, which is maybe why I have never experienced neutropenia.

Is your mum receiving Filgrastim? If not then why not as it is mandatory in the trial and as EV is now viable on the NHS I would have thought they would use the same protocol as the trial.

Happy to answer any questions you have on Padcev and Keytruda.

Thanks
Chasam

Hi Chasam

Thank you so much for this information. Mum has been given Filgrastim. Apparently it’s not given as standard incase your white blood cell count is normal, and it would then make them too high. So it sounds like they adapt to it depending on how you react. Which to me feels like quite a gamble.

My Mum is still in hospital, I’m concerned that she does not seem to be getting any better. She’s been given a scan, more bloods taken and more antibiotics. My Dad is quite muddled so we are finding it hard to understand what is happening. He mentioned her neutrophils have got lower which concerned me.

Hoping for an update today as my Sister is going to the hospital today. It’s my lovely Mums birthday today too, what I would do to be able to give her a hug. 

My best wishes to your mum.I’m so sorry she is having such a rough time.I hope she gets better soon.Love Jane xx