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A man sitting in a chair in a hospital gown receiving part of a CAR T-Cell Therapy treatment

A Patient’s Experience with CAR T-Cell Therapy (Part 1)

If you’ve been reading about CAR T-cell therapy (chimeric antigen receptor T-cell therapy), you might be wondering what it’s like from a patient’s perspective. I’ve had some strange questions about my experience – Did it hurt? Was it worse than chemotherapy? Do you feel those tiny genetically modified cells wriggling around? Do you glow in the dark now?

Well, the answer to most of those is no. Somewhat disappointingly I have to say – I was keen to develop some sort of superpower like glowing in the dark, but I guess the power to fight cancer is a pretty good one.

My experience with CAR T-cell therapy

In general, though, the experience of CAR T-cell therapy was a breeze, compared to chemotherapy (which would be a category 5 hurricane if I extended the metaphor that far).

Step 1: Apheresis

The first part of the treatment was the apheresis (also called leukapheresis), the process of having the T cells removed. This is very much like giving blood – you go to a special medical facility, and they hook you up to a machine with a blood draw out of one arm, through a machine that looks for all intents and purposes like a washing machine, and then a tube back into the other arm. Once they turn the machines on, blood is taken out of the arm, and the machine spins it around in a centrifuge thing, which skims off the T cells. Then the remaining blood is returned.

This process does take a while – I’ve done it three times, for various reasons, and each time it took around 4 to 5 hours. During that time, you can’t get up or move around easily, so going to the bathroom beforehand is a must. I also must admit that I made the machine stop a number of times (‘occlusion alert!!’) because I bent my arm to scratch my nose or reach for my phone or to high five a passing patient. It only takes a minute to get it started again, but I did feel bad I was making the poor nurse have to come over to my machine constantly, so I tried my best to lie there as still as I could (no more high fives!)

By the time I’d finished, 22 litres of blood had gone through the machine. Considering the average adult has about 6.5 litres of blood in them, that means my entire body’s blood supply went through three times. No wonder at the end I felt quite wiped out and tired.

Step 2: Conditioning chemotherapy

The T cells were shipped off to the lab, and I had to wait, for about 4 weeks, for them to be returned.

About 5 days before they were back, I started the ‘conditioning chemotherapy’. This is a special dose of chemo used to ‘clear out room’ for the new T cells. Basically, the modified T cells are likely to multiply and grow when returned to the patient, and if all the ‘normal’ T cells are hanging around, there is no room. So the chemo (for me it was fludarabine and cyclophosphamide) kills off a few normal T cells to make space.

This chemo regime was three infusions over three days. The doctor had told me that, compared to the chemo I’d had before, this one was low dose and I should handle it easily. I think that made me relax a bit too much, and I got a bit slack on taking my anti-emetics (anti-nausea pills), and I ended up getting terrible nausea for the 2 days after the treatment. My own fault though, I should have been more diligent about it. You live and learn. The operative word there being ‘live.’

Then we get to Day 0. D-Day. The day the cells are returned to the body and life changes forever… but to hear about that, you’ll need to read the next installment in this series.

Read Part II of David’s experience undergoing CAR T-cell therapy!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ann Harper moderator
    3 weeks ago

    @david-downs very interesting reenactment of your experience. We all do what we have to do, but having to sit still that long must be rough. I’d probably fall asleep. Then, after all that, you have to wait 4 weeks. I guess that is probably good and bad – bad that it’s not done, but good that you get a break. Wishing you the best…

  • Susan Gonsalves moderator
    4 weeks ago

    @david-downsThanks for sharing this information. This treatment is not something I have to go through but your perspective provides great insight and will help a lot of people. Looking forward to the next installment. Susan

  • Daniel Malito moderator
    4 weeks ago

    @david-downs This is wonderful info for those who are going to undergo CAR T-cell treatment. It’s something people do ask about, so having this article to go to is going to help many. Thanks for laying it all out, good stuff, keep on keepin’ on, DPM

  • Nancy I
    3 weeks ago

    I had an autologous stem cell transplant November of 2018 , sorry to say it didn’t take. Now I’m set to have the CAR-T transplant .Start the procedure he 18th of this month. The first transplant was a breeze, hope this is the same only with better results. I enjoyed reading your article and am looking forward to more. Thanks for sharing.

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