Hi I have recently relapsed with Non hodgkin’s follicular lymphoma.
I’m preparing to start treatment with a new drug recently approved by NICE in March this year.
Does anyone have any experience of treatment with Epcoritamab therapy as a third line treatment?
Hi @Shipmandenise and welcome to the forum.
I’m sorry to read about your relapse. That must be really difficult news for you.
My diagnosis was something different and I’m not aware of this drug.
You may want to reach out to the @BloodCancerUK-SupportTeam to see what they can share.
You can contact them for free using the details below.
Call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
There may be others on the forum who are aware of this treatment.
Take care 
Hi @Shipmandenise and welcome the the forum.
I’m glad you’ve found the forum. I have follicular and had treatment 9 years ago. I haven’t experienced relapse, but I hope there are others who will be able to share their experiences with you.
How are you managing at the moment?
Thanks for your advice.
Hello there @Shipmandenise, welcome to the forum at what must be a stressful time. I’m sorry to read of that relapse but am glad to know you have a plan. I see dear @DuncanB has shared the free number for the lovely Blood Cancer UK nurses and would urge you to give them a call as they can discuss medical queries and trials on 0808 2080 888.
I couldn’t find much around this site regarding Epcoritamab, but Cancer Research UK has this, which may be of interest: Epcoritamab (Tepkinly) | Cancer Research UK
Although I’m sure you have read lots about your diagnosis, here is the Blood Cancer UK information where you may still find some new information: Follicular lymphoma | Blood Cancer UK
Maybe you’d like to reach out to others who have posted about Follicular lymphoma ('FL')? If you use the search box at the top you could look for Follicular lymphoma ('FL') or relapse, for example. I had a quick search and this thread might be of interest: Diagnosed with Follicular Lymphoma 2 weeks ago
Finally, here’s a link to Lymphoma Action’s information about relapse with lymphoma: Lymphoma that comes back (relapses) or doesn’t respond to treatment (refractory) | Lymphoma Action
Hope this helps a little @Shipmandenise, I’m sure like @Nichola75 says others around the forum have much to share. Use @ before someone’s username for them to receive a notification from you. And do consider giving the Blood Cancer UK nurses a call.
Hi thanks so much for the information x
Hi @Shipmandenise, welcome to the forum. I just wanted to add one thing to what’s already been shared here, since @DuncanB, @Nichola75 and @Duncan have covered the practical side well already.
@Parmy63 has been on a trial combining epcoritamab with lenalidomide for relapsed follicular lymphoma, and posted an update back in May with some encouraging news about how it’s gone. (@Parmy63, please don’t feel any pressure to respond, but if you’re able to share a bit of your experience with Shipmandenise, it might mean a lot.)
Wishing you well as you get started with treatment - keep us posted on how it goes.
Take care,
Ceri
Hi@shipmandenise,
Welcome to thus brilliant forum. I dont know anything about, your diagnoses but am sure someone does . Good luck xx
Hi Denise as stated elsewhere I’m currently on the refract trial (epcoritamab and lenalidomide) I’m currently on week 23 of 48 the results of my April pet scan were amazing all the tumours present before treatment have disappeared I’m having another pet scan on the 17th July so will post an update then
The main side effects have been low neutrophils due to the lenalidomide which was improved by stopping the lenalidomide for a couple of cycles
Fatigue and diarrhoea have also affected me both of which are manageable.so nothing too scary hopefully you will sail through the treatment and see some improvement
Good luck and please keep us updated
John