CAR-T therapy is a new type of cancer treatment that uses the immune system to kill cancer cells. In some cases it has cured people where all other treatments have failed.
But what is it? How does it work? Who is eligible to receive it? Find out here
Have you received it? Is it something you may need in the future? Do you have further questions about this treatment?
I had CAR-T therapy last year. One of the complications that appeared after my SCT for a severe Aplastic Anaemia was Lymphoma. Attempts to curb it with R-Chop Chemo knocked out my new stem cell’s progress so I was put forward for CAR-T at Hammersmith Hospital. 1.2 billion cells were transfused over a 4 week period and a few months later a PET scan showed the tumour had halved, another 3 months later it had gone. This is an amazing treatment, without, for me at least, the unpleasant side effects of Chemo.
Thanks, Dawn, this is really interesting and informative, thanks.
Hi Fozzie, great to hear from you again, it is really useful to hear from someone who has actually had CAT-T therapy, take care and anything else you can tell us about your experiences would be helpful.
Hi, I have refractory aggressive DLBC. I am waiting on a PET scan and results to see if I can proceed with having CAR-T therapy, as this now seems to be my only option for remission. Is anyone else going to have this or had this treatment? I have been through a lot the last couple of years with the return of the disease and chemotherapy treatments. I am apprehensive about CAR-T and would like to hear about the experience of others.
Hi @Sara a great big welcome to our forum, I hope you find it supportive. We are here for you even if we cannot answer your question (I hope others will be able to) and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at firstname.lastname@example.org to talk to someone. You seem to have been through a lot over the last couple of years and I expect the fears, thoughts and feelings you might have had, and are having, are shared by many of us. Please keep letting us know what it is like to be you.
Hello @Sara a really warm welcome to the forum to you. I’m so sorry you’re going through what sounds like a really tough time. It’s totally understandable that you’re keen to hear from others who have experienced CAR-T and I hope you get a response from someone who has been through this treatment pathway. It sounds like you’ve been through an awful lot Sara, may I ask how you’re coping? Do you have much support around you?
Hi Sara. I had CAR-T in spring 2018 for DLBC, which appeared a few months after my stem cell transplant. It was painless and quick to administer. The cells were transfused over four weeks. Each week was about 300,000,000 cells and the whole procedure was over pretty quickly. Over the 4 weeks I was given 1.2 billion cells and they completely destroyed the tumour in my colon in about 7 or 8 months, without the horrible side effects I had experienced after chemo and radiotherapy. I hesitate to say there is nothing to worry about, and appreciate that everyone is different and reacts differently to treatments, but I personally found it one of the easiest of the many treatments I had over a period of about 18 months when ill. Good luck with whatever treatment you have. Paul.
Hi, unfortunately my DLBCL returned before I could have a stem cell treatment, so I’m back on for CAR-T. I’m having polivy treatment in the meantime as an interim therapy. It is very new, only registered in this country in May. Does anyone have experience of it or CAR-T for that matter. Sara
Hi @Sara, unfortunately I cannot help but I just wanted to say that I am sorry your DLBCL returned before you could have your stem cell transplant, you must have had such a shock and felt so many emotions.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at email@example.com and we are here to support you.
Take care of yourself you have been through a lot and in Covid times as well. Please keep posting how you are.
Hi there Sara,
How are you doing?
We have information here: https://bloodcancer.org.uk/understanding-blood-cancer/treatment/what-is-car-t-therapy/ about car-t therapy, which I hope will be helpful to you?
As you touch on there is quite limited information about polivy treatment, though this link here might be helpful: https://www.ema.europa.eu/en/medicines/human/EPAR/polivy is from the European Medicines Agency (EMA)
I also wondered Sara, has there been any opportunity to talk through your treatments with your healthcare team?
Hi @Sara, this is not a medical opinion but I have just heard from someone who said
’ Car-T is usually given after a relapse for ALL and Non Hodgkins Lymphoma. I believe it was originally for use with T Cell, but new research is showing it useful with B Cell Leukaemia too. Its another form of chemo treatment.’ How are you doing now?
Hi Sara me again. Someone else, who is not a medical person, says ‘CAR-T is classed a biologic therapy as opposed to a chemotherapy and it’s the patient’s T-cells which are extracted and modified in a lab to become CAR-T cells. The modified T-cells are directed to target specific receptors on the patient’s lymphoma/leukaemic B-cells.
NHS England have approved two commercial products for adults with relapsed or refractory diffuse large B-cell lymphoma and primary mediastinal B-cell lymphoma.
One of the products has also been approved for children and young adults up to the age of 25 but with relapsed /refractory B-cell acute lymphoblastic leukaemia (not T-cell ALL)’.
Hi Sara, apologies for only picking up on this now… how are you? Have you managed to find information you want or are you still looking? If there is anything in particular I may be able to help?
I hope this reply won’t be too late. Now, CAR-T therapy has actually made great progress. And I’ve recently found on Google that TCR gene rearrangement can be detected, which can identify T cell proliferation in T-cell-caused blood cancer. But I don’t know if this is reliable or if there are any clinical trials available. But hopefully, you could get some information useful.
Here are the links I found on Google:
- biotech research about TCR Clinical Diagnostics for blood cancer
- More than Just CAR T Cells: TILs and TCRs
Hi @viviancreative a great big welcome to our forum and it sounds as if you are a ‘Googler’.
If you need to talk to someone at the Blood Cancer UK support line about your situation they are available on 0808 2080 888.
Blood Cancer UK also have some nurse advisors who are really knowledgeable too.
I look forward to hearing all about you and look after yourself