Me and CAR-T: Meera’s story

Meera Shah was first diagnosed with a plasmacytoma in 2011, a few months after giving birth. It progressed to myeloma seven years later and was treated. When she relapsed, she was offered CAR-T. Here Meera reflects on the positive impact the treatment has had on her and her family, how it’s transformed her day-to-day life and why she believes it should be available on the NHS.

How many treatments had you received by the time you were offered CAR-T?

I’d had two treatments. Although, technically, CAR-T was classed as second-line for me, because my first treatment was radical radiotherapy for a plasmacytoma. I then had first-line treatment for myeloma: chemotherapy, a stem cell transplant and maintenance treatment.

What information were you given about CAR-T before the treatment?

My team were really good at making sure I was well informed. CAR-T was something that was on my radar for a few years and I’d been looking out for information and listening to talks on it. So, when the treatment plan was suggested, I already had a few questions. My consultant and my CNS spent a long time going through a lot of the data, and answering all the questions I had. I went away and did my own research, looking at papers, read up on it and then went back with more questions.

Did you have any concerns about getting CAR-T?

I did, because it’s a relatively new treatment and there hadn’t been that many patient experiences that I could find. The only information I really had was the published data, which were a few clinical trials and it wasn’t huge patient numbers.

I wanted to know how other patients felt going through the treatment: which other side effects had they felt? Were there any tips? When I had the stem cell transplant, there were thousands of patients who, through various support groups and social media pages, were able to share their tips and advice, even on things like packing for the hospital or what to do if you feel like this, or is it normal to feel like that. That reassurance wasn’t there with car T.

The side effects, mainly the neurological side effects, were a big concern to me. Whilst I knew that there were very small chances of them happening, some of the more long-term neurological changes can be life-changing. That’s the one thing that made me take a while to decide to go for the treatment.

How difficult (if at all) was it for you to access CAR-T?

The hospital MDT (multidisciplinary team) first had to decide whether I was suitable for treatment. I’m not eligible for clinical trials because of the way my disease presents, but I had access to health insurance. So, it was put to the insurers and then their medical panel had to decide whether to approve or not. I had CAR-T in July 2025.

Can you tell us what CAR-T involves? How long were you in hospital for and how does the treatment work?

Initially, before any treatment starts, the T cells are harvested. It’s using the same apheresis machine that you have for stem cell transplant harvesting, but you don’t have any treatment beforehand. There’s no chemo required, no G-CSF injections to boost your cells or anything like that. You literally just go in and have your day on the machine. The T cells were packed up very carefully and a courier was waiting to transfer them to the airport, and then they were whisked off to the lab in America. I remember thinking, please make sure everything’s okay. You’re literally saying goodbye to your T cells knowing that they’re going to come back and potentially change the fate of your myeloma.

The following week I started pomalidomide, dexamethasone and daratumumab as my bridging chemotherapy. Originally it was going to be for six weeks because I’d been given a window of when to expect the T cells back, but there was a delay in their return, so I had another week. Then you have a few weeks’ break to wash out the chemotherapy from your system to recover before you’re admitted. Overall, I had about seven weeks of bridging chemotherapy. Once the T cells arrived, the next phase of treatment started. I was admitted as an inpatient and had three days of chemotherapy (to prepare the body for the new cells), which did make me unwell. I was sick the first day and so was given anti-sickness medication. I was also quite tired. I had a couple of days’ recovery which I really did need to feel well again. Then, the next day, I remember it was a Monday, my T cells were infused. The water bath is wheeled into your room. They bring the canister where your cells are frozen and thaw them out into a milky liquid. Surprisingly, it’s a very quick infusion – it’s over in 15 minutes. And then you think: come on CAR-T cells, do what you need to do.

The next few days nothing much happened. Twice a day I had to do handwriting tests. There are also 10 questions that they ask you. Things like, count backwards from 100 in 10s. Where are you? What’s the time? What’s the date today? Who’s the Prime Minister? Various knowledge questions. They make you point to things, touch your nose, touch your ear. They mixed it up every day, but it’s pretty similar. They do that all the way through, even beyond discharge as well.

On day six, the monitoring increased. That’s when I woke up with pain in my heel. I actually remember getting quite excited because I thought: oh, something’s happening. As I had a tumour in my heel, I thought the CAR-T cells must have found the myeloma cells. That afternoon I had my first temperature: it was the beginning of the Cytokine Release Syndrome (or CRS, a potentially serious immune response which can cause symptoms like fever, shortness of breath and changes in blood pressure). I had a second temperature in the very early hours of the next morning and I did feel quite unwell. I was given medication to manage the CRS and I fortunately escaped the ICANS (Immune Effector Cell-Associated Neurotoxicity Syndrome) symptoms.

I had pain in my knee and in my heel (where I had my myeloma bone tumours) and that meant that I couldn’t weight-bear for a few days. Unusually, and I believe a rare side effect, I had joint inflammation in my wrists and my knuckles with a lot of swelling and pain so I was unable to use both hands for a while.

The challenge was how to manage the pain. I couldn’t have anti-inflammatories due to my platelet levels or steroids because that could affect the CAR-T. I was discharged 15 days post-CAR-T infusion, but with very close monitoring afterwards.

What did it feel like waiting for your T cells to be modified and returned?

Initially, you’re busy because you’re having the bridging chemotherapy. I was able to work from home part-time and carry on with normal life, within reason. I was told it would be six to eight weeks before the cells came back and I stayed really positive through that. But then I got a call to say, ‘They’re delayed, we’re going to push things back a week’. Then it was delayed another week. I was disappointed because my hope was to be done and dusted and home before the summer holidays started for my son.

How long did it take to recover from CAR-T and what does monitoring look like for you?

I felt better when I came home after CAR-T compared to after my stem cell transplant. I mostly had fatigue and took time to build my stamina and energy back. I went back to work at the three-month mark, working from home initially because of my immunity and pacing myself. I’m still mostly working from home. In those early few months, it was very much about shielding, looking after your immune system and just avoiding the bugs.

When I was first discharged, I had to go in twice a week for monitoring, which involved blood tests and the handwriting and knowledge tests that I mentioned. There were some challenges because I wasn’t allowed to drive for a month after the CAR-T and I also wasn’t allowed to take public transport to travel in. My husband had to make time in his diary to drive me in for a few weeks.

I had a full-body MRI at the three-month mark and there was evidence that my bony lesions were healing, which was amazing. At that point, they were able to say I was in complete remission. At the moment, I’m going in for blood tests every four to five weeks.

How are you doing now? Are you currently on any treatment?

There are still some lingering issues and pain, especially in my right wrist. So writing is still difficult as well as lifting things and doing exercise. Everything’s got to be adapted now. But I did not expect to feel this well. Mostly because I had been on lenalidomide maintenance for years before this and I really hadn’t got on with it. We kept lowering the dose and reducing the time that I was on it for. I had such fatigue and brain fog and that feeling of ‘You’re not yourself’ the whole time I was on it. I’d had discussions about whether to stop maintenance or not, but I was too frightened to stop it in case I’d relapse. So, you persevere.

Now I’m not on any chemotherapy or maintenance drug, I’m just on supportive medication. I very quickly saw that chemo fog lift. I just felt a lightness, life [felt] easier after years of persevering and just carrying on. It’s only now that I can see the contrast of actually how much I struggled in the last few years being on permanent treatment compared to now. It’s quite amazing to have that clarity of mind again. And not having to work out which is going to be your worst week on treatment before you book something into your calendar, or you say yes to a social event, or a work event, or when my son wants us to do something as a family. Now I feel like I can plan longer-term and it’s exciting to feel well in yourself. I don’t really know how to describe that feeling.

I have four-weekly intravenous immunoglobulin infusions and hopefully they will stop once I’m producing antibodies again. I still have to have G-CSF injections whenever my neutrophils dip below one. But, at some point, I’ll be having my vaccinations so they’ll probably remove some of the supportive medication.

How did CAR-T impact family and friends around you?

As always, when you relapse, it’s a huge blow to the family. Just telling them was hard. I have a teenager, so I had to manage his emotional health around that as well. Then there’s the to-ing and fro-ing of the discussions, mostly with my husband, around which treatment to go for. CAR-T was a big decision. There’s the logistics of managing the family around your treatment schedule and managing work, whether you carry on working or not. My husband had to drive me into the hospital during the recovery. You also need to be monitored at home for a few weeks because of the potential neurological changes. So between my husband and my son, we made sure someone was at home. We also had other people come keep me company. My consultant had told my husband what to look out for if anything was to change. Luckily it was in the summer, so if I did want to see somebody, I’d meet them outside. It would be a lot harder in the winter and you’d probably feel very isolated in that time because your immunity is at risk.

Do you think CAR-T should be available on the NHS?

Absolutely. CAR-T is such an incredible treatment. There are the economic benefits of not needing ongoing treatment, but also the social and psychological benefits. I appreciate that it’s an expensive treatment upfront, but I think if you weigh it up against the long-term benefits, you’re not spending money on maintenance treatment and ongoing treatment. A lot of patients feel quite unwell when they are on maintenance, and often have to use other healthcare services, which also adds on cost.

From a quality-of-life point of view, a lot of myeloma patients either stop working or go part-time, or they can’t progress in their career because they feel unwell a lot of the time managing their myeloma treatment, or their side effects. And if you were to get CAR-T early enough in the treatment regimes, does it mean that you’d be able to work more than you were able to before?

What does that do for your self-esteem and your mental health? Being able to live a more fulfilled life in a way that you’re choosing to do rather than a way that your disease is making you live? The potential for what a patient can do after having CAR-T is quite incredible. I see the hope CAR-T gives my family as well. My husband’s able to plan his life in a different way. He’s able to travel for work, whereas previously he couldn’t as much. My son feels a lot more confident about my condition and he’s commented that I have fewer unwell days. I think that has had an immeasurable impact. There’s no way that you can quantify something like that.

Has anything surprised you about CAR-T?

Two things surprised me. I had been told by my consultant that the first few days after the CAR-T infusion are very boring. It really was as boring as they said. Nothing happened for the first six days. I had to do my handwriting tests and my knowledge tests twice a day and that’s it other than blood tests. I’d prepared for this and taken things into the hospital to keep myself occupied. But you do sit there wondering for a few days, is this treatment working? Is it going to work? Am I going to get a temperature? Am I going to get some pain? Am I going to get the headaches that they talk about? And then it suddenly starts happening exactly at the moment that they said it would.

The other surprising thing is how positive it was, which you don’t hear very often with myeloma treatment. When you’ve been through stem cell transplant and been quite unwell with sores, not being able to eat, feeling sick, the diarrhoea, it can be quite traumatising. So, I was really anxious going into the CAR-T because it was an unknown. I was concerned about how unwell I’d feel. But other than the few days that I was unwell, CAR-T was a really smooth experience. I would do it again in a heartbeat.

What are your hopes, goals or dreams for the future?

My son’s 15 now, and I was diagnosed nearly 15 years ago with that initial plasmacytoma. At that point I just couldn’t see today. My biggest goal then was to make it to see him be an adult and the ultimate dream was to see him graduate. Now that feels like a reality that I could start to believe in. I really do believe I will see him as an adult, but I’m pretty sure I’ll see beyond that as well.