War in the Blood - BBC documentary

Some of you may have already watched this documentary, looking at the emotional journey of two patients undergoing the clinical trials for Car T treatment, which could radically change the way we treat cancer.

It’s available on BBC iPlayer, or you can watch here: [https://www.bbc.co.uk/programmes/m0006nzt]

Did you watch it? Do you have any questions, or thoughts?

As always, if you’d like to talk through anything then our support services are available, 0808 2080 888 10am-4pm or via support@bloodwise.org.uk

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Hi Dawn. I found it a very emotional watch and only this morning can look at it objectively. I do think that it was important that they showed the glimmer of light for Car T treatment. I think both families were extremely brave allowing everything to be filmed. Graham did say that he was realistic about the chances of success and just wanted to help research (Loved the guinea pig tree ornament). It was a tough decision both took to stop treatment, and the conversation they had with their families must have been so hard. I was pleased to see Graham got out on his bike, and Mahmoud have some time doing things with his mates. For anybody who is still to watch it I would suggest that you do not watch it alone, or just before bedtime.

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Hi Dawn, yes, I was really surprised how many emotions it brought up in me and it was past my bedtime when it finished which meant I was still immersed in it when I tried to go to sleep. I thought it was a very well made programme and good to have it from the patients and families perspectives as well as the research and medical side. The whole package and I am so glad I watched it but I cannot remember a programme that had that effect on me, actually it was the Karen Carpenter story one New Years Eve ages ago.

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It was a hard watch but a worthwhile one. Very brave families. Still thinking about it today x

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We’ve just finished watching this excellent documentary.

Very, very close to home in my case and
an extremely hard watch for my wife.

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Dawn, is there some way that it can be communicated when these men were treated and advances made since. I noticed a FB post this morning from someone who is having car-T next week and is understandably worried about what he is going to face. Apart from a few shots of people who were in remission after having the same treatment there was no addendum updating people on new advances, and how the research had helped. It was an emotional watch for those who had been through blood cancer treatments, but it must have really shocked those who are undergoing treatments. I am surprised that there wasn’t a link for Bloodwise at the end of the programme. Best wishes

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Louise, thank you so much for sharing your thoughts. I can totally appreciate those who may need CAR-T or are possibly going to have it soon may be worried following the documentary, as there has been a lot of learning and a lot of work since those early trials to make CAR-T safe and put processes and procedures in place to ensure the best quality care and experience for those receiving it. I’ve shared this with some of our media colleagues here at Bloodwise, to see what we can do around ensuring the story we tell is balanced and not scary. Thanks Louise.

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@KateBloodwise has written a review of the documentary and offered some thoughts and insights, if anyone hasn’t seen it on social media you can read it here; https://bloodwise.org.uk/community/war-in-the-blood-documentary-review-car-t-therapy-blood-cancer

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I agree that they did not make enough of the fact that this was a Phase 1 drug trial - and only those who have been on a drug trial would know what that means in any case.
I was on a Phase 2 and at interview before being accepted it was explained that a Phase 1 was only suitable for those who had no other hope ie a Last Chance Saloon.

As I had relapsed but still had the option of another regimen of chemo, a Phase 1 would have been too much of a gamble for me. As it was I was offered and chose the Phase 2 because I could not face another 3 to 4 months of cytotoxic crap being put in my veins, with reduced odds at achieving remission .
Like the guys in the documentary I too had decided enough was enough. But that’s not how things worked out for me.

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Hi everyone, I watched this on the real player last night and to be honest I was in awe of the patients, it demonstrated to me how strong the survival instinct is in some people. However I empathised with Graham’s decision not to do the the third infusion and concentrate on staying out of hospital and spending time with his family. Although this programme was about a specific therapy I felt it encapsulated the unique challenges of having a blood cancer, and the psychological pressures of treatment. One of the doctors made a remark about him being more interested in the science rather than individual patients. I’ve always felt when talking to my haematologist I was talking to a research scientist not a doctor, which is something I have found disappointing. Hopefully we can find a way of treating blood cancer patients in a more holistic manner.

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Hi Alfie, I was really surprised at the emotional effect the programme had on me and the next day I still felt emotional and very withdrawn and thoughtful. If you felt the same and need any support we are all here for you and the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day if you need it. Take care.

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Hi, I reckon I must have been a lucky lady as I had an amazing haematologist who used to go above and beyond. When I had my first relapse he had obviously been buzzed as soon as I walked through the ward door, and came rushing in, sandwich still in hand. On a couple of occasions when I was an inpatient and he was off duty he would come to see me as he was “just passing”, including on New Years Day. He always asked me if I had been away, about the family, and about my volunteer work with Bloodwise. When I had a problem he made sure I was quickly referred to dermatology and ENT. When he wrote to tell me he was retiring I felt bereft, but luckily I was discharged at my next appointment which was with a young doctor. I think if he had told me to my face (after 12 years care) I would have had burst out sobbing on his shoulder. Some doctors are more suited to research than dealing with patients. Thankfully I also have an empathetic GP due to the multitude of health problems post treatment. I also have regular massages with a lady who is as good as any counsellor (unfortunately she is away sailing for 6 weeks) Take care

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Anyone who has watched Sunday night’s documentary ‘War in the Blood’ will have seen the stories of two men who participated in the first clinical trial exploring giving this type of CAR-T therapy to adults with relapsed ALL for the first time, and the journey these two men and their families went on and the very sad ending where both men sadly died after having the treatment. Understandably, for those affected by blood cancer or facing the possibility of having or needing the treatment, this documentary brought up feelings of uncertainty, fear and worry about the treatment and what clinical trials may mean for them and their loved ones.

The trial featured in the documentary was exploring the use of CAR-T in treating acute lymphoblastic leukaemia (ALL), an aggressive form of leukaemia. Research into the use of CAR-T to treat this form of blood cancer in adults is still ongoing, with researchers in Manchester & London recruiting small numbers of people whose ALL is high risk, or has relapsed following treatment.

Clinical trials are a key component of developing new treatments and potentially offering the hope of a cure, as they allow researchers and clinicians to test new treatments against existing therapies and learn whether they have created something new and better, that delivers clinical results with fewer side effects. However, before a trial reaches this stage there are numerous phases of drug development, the first of which is known as a ‘first in human’ trial. This is where a medication or treatment that has previously perhaps been tested in vitro or in other preclinical studies such as animal studies, is administered to humans for the first time. This phase of a study is where researchers aim to establish whether a medication works in people the way they expect it to from their laboratory studies, by seeing whether the drug acts on cancer cells the way they expect it to, and what that response may be.

This ‘first in human’ stage is the work that ‘War in the Blood’ focused on, the very first stage of developing a new variant of this groundbreaking treatment. Following this first stage, and the very sad deaths of Graham and Mahmoud, researchers were then able to learn from this and develop this treatment and improve it for the next phase of clinical testing.

Last year NICE approved CAR-T for use in children & young people with B-cell ALL who disease is refractory, has relapsed following a stem cell transplant, or has had a second or later relapse. It is also approved in adults with refactory or relapsed diffuse large B cell lymphoma (DLBCL) after 2 or more treatments. Therefore, while it is a highly complex and potentially risky treatment, it has been shown to be effective in cases where there were no other treatment options, it is only once treatments are proven to be safe and effective are they licensed by the European Medicines Agency who offer it marketing authorisation.

Without the invaluable contributions of men like Graeme and Mahmoud, there wouldn’t be those like the people at the end of the documentary who are alive and successfully in remission today, able to live their lives and spend time with their family and loved ones. The CAR-T therapies currently available on the NHS offers hope of long term remission in a small number of patients who may otherwise have faced the possibility of no further treatment options.

If anyone has questions or worries following the documentary please do know our support services are available and here to help if you need us. 0808 2080 888 10am-4pm Mon-Fri (Weds 10am-1pm) or via support@bloodwise.org.uk

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Dear dawn, my admiration for Graeme and Mahmoud knows no bounds. It’s the fortitude of patients like this that drives forward research, hand on heart I couldn’t have coped with what they went through so to me they are heroes and pioneers. Throughout the history of medicine certain individuals are prepared to push the limits and many people are alive today because of them. We all stand on the shoulders of giants so thank you Graeme and Mahmoud,

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Yes, Alfie, I really agree with you. Graeme and Mahmoud are the real pioneers and they and their families are the real heroes, thank you so much to them all.

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Thanks dawn. I had a blood cancer friend who’s family member was doing really well in remission and had almost forgot they had the disease ring me up having been really quite disturbed having watched this. She said they’d begun to feel life was back to normal and this shook her up.

Right now I’m not quite sure I want to watch it myself. It’s just a bit close to home. And if other members of the forum feel like that they definitely shouldn’t feel they must watch it. I may change my mind of course being a fickle chap.

It is of course the reality that blood cancer is a major killer but for many of us we live in periods of remission where we begin to be like “normal” people out there who forget they too are vulnerable and mortal.

To be honest while I was still talking to my friend I quickly texted someone else I know with a blood cancer and suggested they didn’t watch this program which I knew they’d recorded before explaining why to them later so they could make an informed choice.

It is a shame the program didn’t follow more people closely so they could emphasise the success stories more. As most of us may know this treatment is now fully approved for some blood cancers and there have been great successes with it. NICE has even funded it.

Getting the balance right is hard between strong hope due to the great advances, and a realistic understanding that this group of cancers considered together are still the third biggest cancer killer.

People who look like they are at the end of their own lives but are willing to try an experimental treatment with no guarantee of success offer all of us more hope for the future. I have a friend who was a young child with blood cancer more than twenty years ago and most of his friends from the ward didn’t make it, but thanks to the bravery of so many in trials the vast majority of those with the cancer he had now live. Things are changing for the better so fast for many of these dreadful diseases.

I just hope this program doesn’t lead anyone to be I correctly convinced that for them treatment is futile if it really isn’t. Since for so many of us treatment (including sometimes CAR-T) offers great hope.

In my own case my doctor told me that if I’d been as ill as I was with the markers I have just a few years ago I would not have survived for long. Now there are lots of treatments for my particular blood cancer and it looks like they are likely to be able to control but not cure it in me for many years. Treatment looks like it has worked well so far for me and for so many others. Although of course quality of life after treatment is sometimes a different matter.

And yet too many are still taken too soon. And so we somehow have to live with both realities as a blood cancer community.

Please don’t despair. Please don’t give up. Please make sure you understand your real situation before thinking “there’s no point being treated”.

If a doctor offers you treatment it can sometimes be good (if you want to know this, which not everyone does) to ask them what would happen without treatment, what it is they hope the treatment will do for you and how likely it is to work, and then of course what the side effects are.

Even for the most easily treated blood cancer there will be a risk and benefit balance for treatment. In other words all treatments have side effects some of which can be serious. But in many situations treatment offers a real hope of a much longer life than we would have without it.

And as someone who has had to ring the support line more than once myself, I do urge you if the program upset you in any way, pick up the phone and Dawn and her team will listen kindly, answer questions where they can, and point you to resources and solutions that will help you. Of course your NHS doctor or nurse is another great port of call particularly for questions about your own situation.

All too often when treatments are first trialled they are more dangerous and less likely to work because they are first used in patients in whom nothing else has worked and who are therefore already quite sick. And to be honest, Doctors do sometimes take a bit of time to learn how to refine treatments and how to use them in a way that minimises the risk in the future.

CAR-T is still experimental in some blood cancers, but thanks to the work of doctors and the willingness of patients like these to volunteer it is now an effective proven treatment in some other blood cancers already and NICE has agreed to fund it.

I do hope that this program won’t put you off being treated with it if that’s what your doctor has recommended. Though of course if it raises questions you definitely should ask your team to explain to you why they think the treatment you have been offered is the right treatment for you.

This journey really is a bumpy one sometimes. And for some this program will have felt like a bit of a big bump in the road. But thanks to friends, family, the NHS and groups like Bloodwise we don’t have to be on that journey all on our own.

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Thank you for sharing your thoughts Adrian, and for such kind words about our support services!

I echo your thoughts around not watching it if it feels too close to home - you absolutely don’t have to, and it’s okay to protect yourself by choosing not to watch it.

I do think the context of the trial in the programme would have been reassuring, in explaining that there are different phases of clinical trials and that a phase 1 trial is looking for something very different from say a phase 3 randomised control trial. I hope the take home message hasn’t been that clinical trials and treatment are futile, but I fear it may have been. As has been said before, please do reach out to our support services team if you’d like to talk or ask questions.

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Hi I watched it last night also and it frightened me as my son who is 25 has ALL B cell and hopefully due a transplant start of February. I have deleted the programme as I don’t want my son to be upset by it.

Hi Hayley. It is a scary watch, but I hope that it reassures you that since this was filmed there have been some improvements to the treatment and there have been more positive stories. Like all new treatments CAR-T is being tweaked as they learn more about it. You do not say if your son is due CAR-T treatment or a stem cell/bone marrow treatment. I had an autologous SCT (my own stem cells harvested and transplanted) eleven years ago, and it was a tough time, but I hope that your son’s treatment is a success. Best wishes, and let us know how things go.
If anyone has questions or worries following the documentary please do know our support services are available and here to help if you need us. 0808 2080 888 10am-4pm Mon-Fri (Weds 10am-1pm) or via support@bloodwise.org.uk

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Hi, a great big welcome to our community forum, I find it supportive and I hope you do too. Yes, I watched the programme and I was really surprised how much it affected me emotionally and I also had a disturbed night. However I thought it was a brilliant, factual true life documentary and unusually 2 hrs long so I think I really got immersed in it. @Pisces56 has responded to your post so honestly and is right that the treatment is being tweaked and improved so much since the programme was made, I believe, a couple of years ago now. You also have the support services details if you feel the need to talk to someone. Please keep posting, as a mother I expect you go through the same fears, thoughts, feelings, practicalities and questions as your son and most of us. We are also here to support you.