Non-Hodgkins Lymphoma Treatment

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Hi,

I'm asking on behalf of Grandad, who. 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. 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 there were 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!

Gemma J - Macmillan over 2 years ago

Dear Churchill Family

Thank you for reaching out. My name is Gemma, and I am one of the Cancer Information Nurses here at Macmillan. Welcome to our online community. We hope you are finding it a helpful and supportive place.

I am sorry to hear that your Grandad has relapsed, it is clear how much he means to you and your mum. It’s completely understandable that you would want to make sure that every possible treatment has been considered.

I see you are interested in CAR-T therapy. This is also a grueling regime and people must be able to withstand a lot of treatment. You can read more about what it entails here. CAR-T targets a specific protein on the cancer cells, and not all B-Cell lymphomas will have it. So, to qualify for it from a cancer perspective your grandad’s cancer would need to have the specific protein (sometimes called marker).

Treatment decisions are usually made through the MDT (Multi-Disciplinary Team) process. It may be worth asking your Grandad’s team if CAR-T has been discussed and ruled out already.

That said the other option open to him is to ask for a second opinion, where his notes could be sent to a different MDT for discussion. In most cases people are entitled to have their treatment at any hospital in the UK. You can read more about our rights here. If your grandad decided wished to request a second opinion, he may like to request a specific hospital.

I see you have joined our Non-Hodgkin’s Lymphoma Forum where one of our fabulous community champions has given you some great links for further information with regards to Lymphoma Action’s list of clinical trials. Bear in mind that researchers must be very specific about who can join a clinical trial. This is called the 'eligibility criteria'. People can't join a trial if they don’t meet the entry criteria that have been set. Find out how to join a clinical trial by clicking this link.

You may like to join our supportive Family and Friends Forum too. It can be a help to speak to others in a similar situation.

I hope the above information is useful for you. If you think it might help to discuss things in more detail with one of us nurses here, please give us a call on our *freephone number; 0808 808 0000 (7 days a week, year-round)

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Non-Hodgkins Lymphoma Treatment