Unknown-Unwanted

Hi,

I’m currently on W&W, diagnosed with CLL at the age of 40, 4yrs ago. I tried to watch in the hope of a miracle for the 2 patients as the final outcome, but found it too distressing to watch. The emotional and physical struggles extending to family was very difficult. I googled halfway and found Graham had died during trails so I turned over.

It’s knocked me this week as I keep thinking of the their struggles of the brave patients and their families.

Setting aside my personal impact, the programme was a very good insight into the impacts of all.

Kind Regards

pigeonCl-HU in reply to Unknown-Unwanted

Thank you for your frank post, Unknown-Unwanted.

I had a feeling this was going to be a distressing program. Now that I have read your post, I am not going to watch it, and will delete it from my planned progs.

Images tend to get stuck in my mind; I don't need the extra stress. Non of us do.

Take care,

pigeon.

Reply (1)Report

2003UKChampion

Hi, thanks for this post, Nicole. As a CLL patient on watch and wait I was completely surprised at the emotional effect this programme had on me. I thought it was a brilliantly made programme by the BBC and I so admire Graham and Mahmoud and their families for allowing their journey's to be followed and filmed, they are they true pioneers and heroes.

As I said the programme had a profound effect on me, I would say not to be watched at bedtime, I was emotional during the programme, I had a disturbed sleepless night and the next day I was definitely very thoughtful. I realise how lucky I am. I did ask and receive some peer support and had a virtual hug.

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Ven61

Hi Everyone. I an new on here.

I watched War in the Bloods. It was so interesting, at the same time a eye opener.

I am going for a clinical trial soon, it was reassuring in the film that there was a few in a long remission. Well done BBC I personally thought it was good. But it did play on my mind for a day or 2.

NicoleLeukaemiaCareAdministrator in reply to Ven61

Welcome to the group

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otonal

I watched it last night and thought it was excellent but a very tough watch. I decided not to share it with my friend for the moment as she is has a form of NHL (Non Hodgkins Lymphoma), has finished chemo and is about to start on a trial at UCH. I’m still getting flashbacks to the bone marrow biopsy sequences and wonder whether there is an option of more sedation if you ask for it. On stage A W&W now, hoping not to need chemo, but just beginning to understand how challenging novel treatments can be. Very glad it’s just a couple of wisdom teeth coming out on Monday!

Paul_CabbanChampion

My first bone marrows 20 years ago were done whilst I had gas and air and once with Midazolam (? spelling)

AdrianUK

Regarding bone marrow biopsy we need to start a campaign to make sure everyone is offered gas and air since that makes it so much more bearable. In America they have them done under a general anaesthetic and until recently they were done under a form of sedation in this country. There is no reason why we shouldn’t be breathing in gas and air so we are floating and in less pain (and care about it less!) when this happens.

More generally Thus is a program some of us will find very upsetting.

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 incorrectly 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.

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 anyone 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 leukaemia care and others we don’t have to be on that journey all on our own.

Stevenxx

Hi

I watched the documentary yesterday with my wife. I thought it was particularly well made. I am a Cml survivor of 15 years with my ups and downs. Sadly the outcome for those 2 patients was not how we hoped it would be. However without those types of trials I would not be hear today. I certainly admire them for doing this selfless thing not knowing what the outcome would be. I’m not lying. It was a tough watch having been given 3-5 years to live. This is only the beginning for Cart T cell therapy. I cringed when they drilled in to the hip. I have only had a corkscrew type of bmb. 2 with sedation and 3 without. The drill looked very gruesome. I know which one I preferred. Admiration for everyone involved with this documentary. Doing things like this to that many more can live on.

UK-Sparky

It was excellent if a little too close to home? Comprehensive, honest and detailed to give the whole journey and impact on all. I wish they had balanced the story by threading the success stories earlier and more rather than what felt like an afterthought at the end.

UK Sparky

ColX-UKChampion

Watched it last night. A great program and a real rollercoaster of emotions.

As a CML patient it made me realise how lucky I am with my treatment options. Was interesting that a couple of TKIs (dasatinib & ponatinib) which are used to treat CML were part of Graham’s treatment regime at one point.

Can’t recommend it highly enough although appreciate it may be a little close to the bone for acute patients.

dsammie33

I am 13 years in remission AML with my up and downs also. I really enjoyed the documentary but found it hard to switch off after watching. I felt like I went back to newly diagnosed and the feeling of not knowing and being in hospital for 6 weeks, even though it was not that bad. It also made me feel really grateful and lucky to be 13 years in remission and living a full life.