Cancer Influencers #10

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Great to see Lizzie has been accepted on a trial. I hope the treatment works its magic for her. Sad that Lizzie has had to push to find a trial, it should be oncologists matching patients to trials.
I dont Know how it works but I think you can ask to be referred to test if you are eligible for trials, but it’s on you. Maybe if you are private ( Bowelbabe) you will get put forward, but it seems on the NHS you need to push for it.
 
I dont Know how it works but I think you can ask to be referred to test if you are eligible for trials, but it’s on you. Maybe if you are private ( Bowelbabe) you will get put forward, but it seems on the NHS you need to push for it.
No, I remember Bowelbabe saying the same. It's up to the patient to look for these.
 
No, I remember Bowelbabe saying the same. It's up to the patient to look for these.
I thought so, I just know she was private and very friendly with the doctors at the Marsden, there was on e trial she was given rather than sort as she was the first person to try it, it was on the podcast. I guess if you think about how many people are on cancer treatment and how many trials are on going it would be a huge task to search and match people, money the NHS won’t spend.
 
I don’t think this is an NHS vs private situation. It is really hard to get accepted onto a phase 1 trial (trial investigating drug in early stage of development- usually reserved for patients who have exhausted standard treatment). This is not only because you need to be super fit, but they are also very strict on the cancer types they will take - the cancer may need to have a certain genetic signature. Each trial may only take a handful of patients. They often need multiple visits for blood tests and reviews- far more frequent than standard chemo.

What happens where I work is if they think a patient is fit enough (normal bloods, good functional status) they ask the closest unit first. If they have nothing suitable in their portfolio, they approach units further away.

You have to remember that the chance of this type of treatment working is low and this needs to be balanced against the potential side effects and the impact of the trial schedule on their day to day life. It's not ideal to treat patients who live miles and miles from the unit in case of medical problems.

I wouldn't be surprised if Lizzi's team referred her to one unit, but were told she wouldn't be suitable because of her heart issue. It sounds like she then asked for a referral to the Marsden. Fingers crossed the drug works for her (every wonder drug has to start somewhere) and all the time in the car is worth it. Lizzi we're rooting for you!
 
I agree trials are very strict and you have to meet the criteria, I’m just saying BB was on very friendly terms with the oncology dept and did get put forward for trials/ new ways of doing stuff. She was obviously there and therefore in the right place. Her overall treatment though was fast my different from the NHS but that was because she was a private patient. 🙂
 
What's the situation with Lizzi and this trial? Why does she need bloods every day and how long does this go on for? I'm not sure how trials work....
 
What's the situation with Lizzi and this trial? Why does she need bloods every day and how long does this go on for? I'm not sure how trials work....
She’ll need bloods every da to make sure that she’s ok to have her treatment. Someone starting a trial is usually in every day to start with and hit hard with the treatment but then some people are only in once a week, twice a week sometimes only one every 3 weeks. It really varies but bloods will almost always be checked the day before treatment she’ll be on the trial for as long as she can. Do you know the name of the trial
 
Hi guys is there any update from Lizzie at all please xx
This is from yesterday:

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She’ll need bloods every da to make sure that she’s ok to have her treatment. Someone starting a trial is usually in every day to start with and hit hard with the treatment but then some people are only in once a week, twice a week sometimes only one every 3 weeks. It really varies but bloods will almost always be checked the day before treatment she’ll be on the trial for as long as she can. Do you know the name of the trial
Thank you for explaining this. 😊 No, I don't know what trial she's on - does it depend on what cancer she has and/or mutations?
 
Are there updates from Lizzi? I saw them when she went public but is now back private, so I'm wondering how her trial is going.....
 
Wonder why she keeps yo-yoing from public to private all of the time.

I suspect she has a love/hate relationship with it. She wants the support, she wants the helpful cancer info she can get, she likes how her account drives up her business sales. But, she wants her privacy and she absolutely hates any negative feedback. I don't blame her, the remarks about Taylor were low blows and so much petty criticism. You really have to have thick skin to put yourself out there. Everybody has an opinion.

I know I've read about grief tourists, but I don't usually read the comments, so have been largely oblivious. But my god, seeing the people flock to dr dan says last video in his dying days, I'm seeing it play out in full display.



The algorithm is having a field day, recommending him to everyone, it seems. Almost 1.5 million views on his last video.

His mum has made the mistake of posting regular updates in the comments. This makes people return for more updates, write comments asking for updates. It's brought out the whole contingent of trolls accusing them of dragging it out for views. It's also brought out everyone who thinks the vaccine is responsible, and everyone demanding he repent for his sins.

It is grisly to see it devolve into goulish behaviour, so many not even caring about the dying man and many expecting updates. For ffs, he's dying. All these people will move on swiftly the moment he passes, which only heightens the macabre nature of what is unfolding. His mum seems decent too, she has more patience than I do not to shadow ban so many of these twisted grief tourists.

This is exactly what it is, I understand it so much better watching this spectacle play out in his comment section.
 
I suspect she has a love/hate relationship with it. She wants the support, she wants the helpful cancer info she can get, she likes how her account drives up her business sales. But, she wants her privacy and she absolutely hates any negative feedback. I don't blame her, the remarks about Taylor were low blows and so much petty criticism. You really have to have thick skin to put yourself out there. Everybody has an opinion.

I know I've read about grief tourists, but I don't usually read the comments, so have been largely oblivious. But my god, seeing the people flock to dr dan says last video in his dying days, I'm seeing it play out in full display.



The algorithm is having a field day, recommending him to everyone, it seems. Almost 1.5 million views on his last video.

His mum has made the mistake of posting regular updates in the comments. This makes people return for more updates, write comments asking for updates. It's brought out the whole contingent of trolls accusing them of dragging it out for views. It's also brought out everyone who thinks the vaccine is responsible, and everyone demanding he repent for his sins.

It is grisly to see it devolve into goulish behaviour, so many not even caring about the dying man and many expecting updates. For ffs, he's dying. All these people will move on swiftly the moment he passes, which only heightens the macabre nature of what is unfolding. His mum seems decent too, she has more patience than I do not to shadow ban so many of these twisted grief tourists.

This is exactly what it is, I understand it so much better watching this spectacle play out in his comment section.



What was said about Taylor? I missed that
 
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