Frequently asked questions for patients

I’ve heard CAR-T cell therapy is dangerous. Is it?

It was dangerous at first – if patients developed severe lung or brain complications, and sometimes severe infections too, after receiving CAR-T cell therapy.

But, CAR-T cell therapy is becoming safer and safer.  Nowadays, it is rare for a patient to need intensive care after CAR-T cell therapy, and some patients spend very little time in hospital afterwards.

Is CAR-T cell therapy only useful to treat leukaemia or lymphoma?

Leukaemia and lymphoma were the first two malignant diseases that CAR-T cell therapy was proven to be an excellent therapy for. CAR-T cell therapies for these diseases are now licensed, and available commercially – but often at a high price.

Since then, clinical trials of CAR-T cell therapy have shown it is useful against several other types of cancer, including myeloma, some sarcomas, and mesothelioma.

We expect more and more types of cancer will be treatable by CAR-T cells in future.

Is CAR-T cell therapy only for patients who have exhausted all other options?

When CAR-T cell therapy was first developed, it was used only in patients whose disease had relapsed despite multiple lines of chemotherapy, and often bone marrow transplantation as well.  But, that is no longer the case.

CAR-T cell therapy may be more effective and safer if it is used earlier in the treatment of cancer – when patients’ white blood “T” cells are more robust, and they have fewer chronic side effects as a result of other therapies.

Is CAR-T cell therapy still too early in its clinical development to try?

If a cancer has a good treatment already, with low risk of major side effects, then pursuing that good treatment makes sense.  But, for patients who have cancers that typically become resistant to standard treatment quickly, it may be wiser to try CAR-T cell therapy – whether through a clinical trial or an access program outside a trial.

Should CAR-T cell therapy only be done at major research centres in the USA?

CAR-T cell therapy was developed initially at major US research centres – including the University of Pennsylvania in Philadelphia and the Memorial Sloan Kettering Cancer Center in New York.

But CAR-T cell therapy trials are now being done widely round the world, in many centres in the USA, in some in Europe, and in many in China and East Asia.

How do I know if my cancer might be suitable for CAR-T cell therapy?

The first step is to identify which proteins on the surface of a patient’s cancer may be suitable for creation of a “CAR” or Chimeric Antigen Receptor to react against.

ConnectGene can organise this testing on a (stored) biopsy sample of your cancer, and then guide you as to what the best CAR-T Cell therapy options may be, and where.

What should I do if my oncologist says I should stick with conventional therapy?

It is your decision if you want a second opinion on the options for further treatment.

A second opinion may be provided by a close colleague of your oncologist – but they may not be truly independent, so it is sometimes better to seek an opinion elsewhere.

ConnectGene can arrange to provide a second opinion on your treatment options – not just CAR-T cell therapy but other experimental and conventional therapy options too.

Will I have to travel to receive CAR-T cell therapy?

It depends.  Sometimes there will be a CAR-T cell therapy that is targeting suitable proteins on your cancer near you.  But, mostly at present, patients will have to travel to a centre that has expertise in CAR-T cell therapy, to undergo treatment there.

What will the cost of CAR-T cell therapy be?

That depends too.  If CAR-T cell therapy is part of a clinical trial, then the treatment itself is usually provided free, but patients may have to pay some or all costs of their supportive care, and for their accommodation and travel.

If CAR-T cell therapy is provided as part of an access program, there may be costs for the treatment itself, as well as supportive care, accommodation and travel.

ConnectGene can arrange with the CAR-T cell therapy centre to give you an estimate of the costs involved.  But, if complications do occur, costs may turn out much higher.

What happens if CAR-T cell therapy does not work?

If a cancer starts to grow back after CAR-T cell therapy, often further treatment can be given to make the CAR-T cells attack the cancer better.  There is also the possibility of having another CAR-T cell therapy treatment, sometimes targeting a different protein.

Patients who have had CAR-T cell therapy can also return to conventional therapy.