Hi all,
I'm posting on behalf of my Mum and I, as my Grandad has just received the diagnosis that his T-Cell-rich Diffuse Large B-Cell Lymphoma is back after being given the all clear in March 2021. He underwent 6 cycles of R-CHOP from October 2020 to February 2021. He then started to feel unwell again gradually since about 6 months ago and his spleen was enlarged. He has had a biopsy which has confirmed his lymphoma is back, around his stomach and spleen (last time it was much higher up). The doctor has booked him in for a different type of (milder) chemo along with antibody treatment, but even with these the doctor has said he most likely only has 6-18 months left. We are beyond devastated and don't know what to do with ourselves as we adore him. He's 76 and has a mild underlying heart condition so is not eligible for stem cell treatment, but could potentially have CAR-T therapy if the doctors agree to it. I just wondered if anyone else had had a similar diagnosis/prognosis or knew of any other treatments (NHS or otherwise) that could be an option? Overall he's pretty fit so we just refuse to believe there's nothing else we can do. We'd be really grateful for any advice or pointers to anything at all, as we really are willing to try anything to help him. We just can't imagine life without him.
Thank you!
Hi ChurchillFamily and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.
I am Mike and I help out around our various Lymphoma groups...... I am so sorry to hear about your Grandad's Relapse I do understand this well as I have relapsed multiple times over my years..... see my story using the link below.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade T-Cell NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
I have had 2 Allo (donour) SCTs...... and these were a very hard journey...... leaving me 'with' a heart condition eventually resulting in a heart attack back in April....... so I can totally understand why his clinical team are ruling out SCT and are not sure about CAR-T as CAR-T is a demanding treatment in itself. But reading between the lines they have not said no?
There have not been many posting in the group recently who are in the same position, age or are going through CAR-T but I have been talking with some folks in their 70s and 80s on the Lymphoma Action Support Platformes who have been on the same journey.
You may also want to checkout Lymphoma Actions Lymphoma TrialsLink and their Lymphoma helpline is open every week day from 10 till 3 on 0808 808 5555 where Sharon or Nic will be on hand to give you some support.
Always around to help more or just to chat ((hugs))
The main thing I would encourage you based on my 23 years journey is that until there is no hope there is....... ((hugs))
