Son starting DA-EPOCH-R for stage IV B-cell lymphoma, any experiences?

[WellhelloMrBond]

My son has just started DA-EPOC +R immunochemotherspy for high grade stage iv B-cell lymphoma. A round of Rituximab did nothing- in fact his post treatment PET lit up like Blackpool. Has anyone experience of this? We feel bamboozled as it has all been so fast & a whole new medical world for us after years dealing with everything pre & post his heart transplant. Any kind word welcome

Hello, I’m Very sorry to hear of your son’s illness and hope you receive some good news soon about his treatment and prognosis.
I notice you didn’t give your son’s age so I don’t know if he is a child or young adult. But if he is a child I just wanted to tell you there is also a talk board called Children's Health which you may want to put your post onto as well, you might receive some additional responses on there.
Wishing you all the best for the future.

Thank you @tartyflette
He is 28
He has been through so much, it seems really unfair. But he has an incredibly determined attitude which will hopefully serve him well.

Hi - I had the same condition and the same treatment. I'm now 2 years in remission. High-grade is actually easier to treat, and blood cancers tend to be stage 4 by their very nature (blood is everywhere). By my second round of chemo I could see significant progress. Ask for a home pump if that's a possibility, cuts right down on hospital visits and allows for a more normal life during treatment. I only recently got hold of my PET scan images from back then and they were pretty terrifying. Trust in the process, and I wish you both well.

Thank you so much,that is very encouraging. He is on a 3 week cycle, with one week inpatient infusions then 2weeks break with blood tests every other day. We know his first PET was bad, but the second far worse: the consultant was visibly shaken as she shared the news and treatment process started the next day.
Right now I feel awful, as we have a bug, at home so can’t visit for fear of contagion.
I have been up literally all night with our youngest.

That was exactly the regime I had although because I had the home pump I only visited hospital on days 1 and 5 of week 1. I had community nurses coming to me twice a week for bloods so I only went to hospital once a week on weeks 2 and 3. The blood tests help keep a close eye on things and I expect they want him as an inpatient because of his medical history. It is horrible not being able to visit - I had similar when I got out of hospital (my first round was as an inpatient) and my partner got covid. Have a look at the Lymphoma Action website, they have some useful resources. I found Pukka ginger tea and mint tea really helped on chemo week.

My other recommendation is to buy him a really nice dressing gown with a hood, mine is White Company. I absolutely lived in it. I hope you can get some rest today.

Thank you @choppolata
Great tips.
That must’ve been horrible for you & your partner :(
He will definitely have to stay in- he has v complex medical history even beyond current & transplant.
Right now he is v upset that we can’t come in- it is heartbreaking.
My youngest has literally just fallen asleep having been up all night.
I am shattered.