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1 hour ago, Jarvinja Ilnow said:

That's huge, mate - mine isn't half that size!

Ha, “one doesn’t like to boast” aside, I’ve got a stinking hangover and have put up a picture of the wrong one. Mine’s the half one which ends at the elbow.

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I've just come across this thread for the 1st time. Some tough stuff to read on here, although I've not read it all. 

 

I was diagnosed with terminal/stage 4 bowel cancer around a year ago and was put on palliative chemo to try and help control it. With all the luck the world can muster, after 2 rounds of treatment I'd reacted to an extent that they wanted to operate. This was still not to be a cure as some of my cancer was inoperable, but it was to extend my life. However, after having my operation, they're hopeful that the chemo has got the cancer in those inoperable areas. I'm now back on chemo, but they're classing it as adjuvant now and the hope is this is the last round with a view of giving me the all clear in the autumn.  I'm not out of the woods yet, but what a fucking difference a year makes. 

 

I'm not too comfortable sharing the experience (hence why I've never posted about it before and not talked about the journey I've been on), but really I posted this as I know speaking with people who are going through or have been through a similar thing can be really helpful. I'm sure everyone's situation is very personal, but I think parts of the journey can feel similar. If there's anyone who's going through this shit or has a loved one going through it and just wants a chat, please PM me. 

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1 hour ago, Barry Wom said:

I've just come across this thread for the 1st time. Some tough stuff to read on here, although I've not read it all. 

 

I was diagnosed with terminal/stage 4 bowel cancer around a year ago and was put on palliative chemo to try and help control it. With all the luck the world can muster, after 2 rounds of treatment I'd reacted to an extent that they wanted to operate. This was still not to be a cure as some of my cancer was inoperable, but it was to extend my life. However, after having my operation, they're hopeful that the chemo has got the cancer in those inoperable areas. I'm now back on chemo, but they're classing it as adjuvant now and the hope is this is the last round with a view of giving me the all clear in the autumn.  I'm not out of the woods yet, but what a fucking difference a year makes. 

 

I'm not too comfortable sharing the experience (hence why I've never posted about it before and not talked about the journey I've been on), but really I posted this as I know speaking with people who are going through or have been through a similar thing can be really helpful. I'm sure everyone's situation is very personal, but I think parts of the journey can feel similar. If there's anyone who's going through this shit or has a loved one going through it and just wants a chat, please PM me. 

Keep going mate. We all want everything to work out OK for you.

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Fucking hell, Barry.

 

Just goes to show you never  know what might be going on for people behind those bluff facades.

 

All the luck in the world, mister

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Also worth remembering if you are a paid up member and don't want to open up on a public board do it on the MF where its a bit more private. 

 

Best of luck to you Barry too

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2 hours ago, Barry Wom said:

I've just come across this thread for the 1st time. Some tough stuff to read on here, although I've not read it all. 

 

I was diagnosed with terminal/stage 4 bowel cancer around a year ago and was put on palliative chemo to try and help control it. With all the luck the world can muster, after 2 rounds of treatment I'd reacted to an extent that they wanted to operate. This was still not to be a cure as some of my cancer was inoperable, but it was to extend my life. However, after having my operation, they're hopeful that the chemo has got the cancer in those inoperable areas. I'm now back on chemo, but they're classing it as adjuvant now and the hope is this is the last round with a view of giving me the all clear in the autumn.  I'm not out of the woods yet, but what a fucking difference a year makes. 

 

I'm not too comfortable sharing the experience (hence why I've never posted about it before and not talked about the journey I've been on), but really I posted this as I know speaking with people who are going through or have been through a similar thing can be really helpful. I'm sure everyone's situation is very personal, but I think parts of the journey can feel similar. If there's anyone who's going through this shit or has a loved one going through it and just wants a chat, please PM me. 

Jesus mate. What a fighter you are. You will win this x

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Fucking hell Barry. Sorry to hear that. But glad to hear you're fighting it well. I'm sure once you've been through something like that, you'll take more joy out of every day of life than most mere mortals.

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9 minutes ago, Lee909 said:

Also worth remembering if you are a paid up member and don't want to open up on a public board do it on the MF where its a bit more private. 

 

Best of luck to you Barry too

It's not really about if it's a private board or public really, I'm just not someone who feels too easy about sharing this stuff. But I do realise talking can help and if I can help someone here get through a tough moment or two along the way, I'd like them to feel they could get in touch. If no other good comes from the experience I've been through, maybe I can help others get through their challenges. Obviously the physical side of cancer isn't a barrel full of laughs (and the treatment that follows), but without doubt the mental challenges are harder and I like to think of myself as a mentally strong and it's tested me - not that you can let those close to you see that. The mental aspect is as tough for loved ones as the patient and knowing others have lived and experienced it somehow helps you make sense of it all. 

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4 minutes ago, rotoq said:

Fucking hell Barry. Sorry to hear that. But glad to hear you're fighting it well. I'm sure once you've been through something like that, you'll take more joy out of every day of life than most mere mortals.

I dunno if you enjoy each day more (right through this I've continued to get up, go to work and do all the shite stuff as best as I've been able!) , but I think it certainly makes you focus on what matters and what you need to achieve in your time here. 

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12 minutes ago, Barry Wom said:

It's not really about if it's a private board or public really, I'm just not someone who feels too easy about sharing this stuff. 

 

 

I get that, that bit wasn't really aimed at you but anyone else. When my mum was diagnosed I really had no one to say anything too and didn't want to say much just had to get it off my chest and was far more comfortable with that on the MF than here. 

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20 minutes ago, Lee909 said:

 

 

I get that, that bit wasn't really aimed at you but anyone else. When my mum was diagnosed I really had no one to say anything too and didn't want to say much just had to get it off my chest and was far more comfortable with that on the MF than here. 

Fair enough mate. As I mentioned in another post, mentally it is a tough on loved ones as it is for the patient, maybe harder in some ways, as the patient even though you don't really have any control, you can convince yourself you're fighting it and it gives you something to focus on beyond worrying about any prognosis or how you're feeling on a given day. 

 

I guess the point of my post, is if people don't want to talk to the people around them or share on here - it can be as one on one on a PM. I know when I was 1st diagnosed there's so many things you are dealing with, you don't want to burden anyone around you as you feel they're coping with enough and you are already burdening them enough with your illness - talking to someone really helps. The hospital and McMillan etc are great at telling you there's people to talk to, but strangely you don't always quite realise that is what you need. "Nah, I'm alright" and it's only once you open up to someone, you realise how it clears the mind. 

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20 hours ago, Barry Wom said:

Fair enough mate. As I mentioned in another post, mentally it is a tough on loved ones as it is for the patient, maybe harder in some ways, as the patient even though you don't really have any control, you can convince yourself you're fighting it and it gives you something to focus on beyond worrying about any prognosis or how you're feeling on a given day. 

 

I guess the point of my post, is if people don't want to talk to the people around them or share on here - it can be as one on one on a PM. I know when I was 1st diagnosed there's so many things you are dealing with, you don't want to burden anyone around you as you feel they're coping with enough and you are already burdening them enough with your illness - talking to someone really helps. The hospital and McMillan etc are great at telling you there's people to talk to, but strangely you don't always quite realise that is what you need. "Nah, I'm alright" and it's only once you open up to someone, you realise how it clears the mind. 

I wouldn't say it's 'nice' to read this, but it totally resonates! Who knew so many of us were going through this shit?

 

It shouldn't really be much of a surprise though: I read that cancer will now affect one in two people born after 1960. Talking to a chemo nurse, and he said he reckons it's all the chemicals we use for cleaning, and in our daily lives, that might have triggered dormant cells. There was also that poor sod who did the class action in the US - he was a gardener who used Round Up for weeding - and he won the case.

 

On a positive note, watching BBC Breakfast the other day and saw this:

 

https://www.bbc.co.uk/news/health-48706822

 

 

'Living drug' offers hope to terminal blood cancer patients

By James GallagherHealth and science correspondent, BBC News
 

NHS patients with lymphoma have for the first time been given a pioneering treatment that genetically reprogrammes their immune system to fight cancer.

Mike Simpson, 62, from Durham, says his cancer is now "on the run".

The therapy, called CAR-T, is a "living drug" that is tailor-made for each patient using their body's own cells

Doctors at King's College Hospital, London, said some patients were being completely cured in a way that had "never been seen before".

How does the treatment work?

CAR-T is the pinnacle of personalised medicine as it has to be developed for each individual patient.

Firstly, parts of the immune system - specifically white blood cells called T-cells - are removed from the patient's blood.

They are frozen in liquid nitrogen and sent to laboratories in the United States.

There, the white blood cells are genetically reprogrammed so that rather than killing bacteria and viruses, they will seek out and destroy cancer.

They are now "chimeric antigen receptor T-cells" - or CAR-T cells.

 

Millions of the modified cells are grown in the lab, before being shipped back to the UK where they are infused into the patient's bloodstream.

The whole manufacturing process takes a month.

As this is a "living drug", the cancer-killing T-cells stay in the body for a long time and will continue to grow and work inside the patient.

Who is benefiting?

Mike Simpson was one of the first NHS patients to be treated.

He was diagnosed with large B-cell lymphoma - a type of blood cancer - in 2015 when he returned from a holiday with a stiff and swollen neck.

Two bouts of chemotherapy initially controlled his cancer, but each time it returned.

By the end of 2018, he was given less than two, unpleasant and probably painful, years to live.

"If this treatment wasn't offered to me, I'd be saying goodbye in a relatively short period of time," he told the BBC.

He started the treatment in February and follow-up scans show the CAR-T therapy is working.

He added: "I feel the treatment really is being effective, that we've got the cancer pretty much on the run.

"Obviously I'm really happy about that and optimistic for the future and glad that I committed to the treatment."

However, it is still too soon to know whether the therapy has been completely successful.

Up to 200 patients a year like Mike could benefit from the therapy.

 

How effective is it?

This is a new therapy and very long-term data is still lacking.

Clinical trials have shown that 40% of patients had all signs of their otherwise untreatable, terminal lymphoma eliminated from their body 15 months after treatment.

"It is a very exciting new development and it gives new hope to a lot of our patients," Victoria Potter, consultant haematologist at King's College Hospital told the BBC.

She added: "It's amazing to be able to see these people, who you may have not been able to give any hope to, actually achieving remission.

"And that is a situation we have never seen before and it's an incredibly impressive change in the treatment paradigm."

 

Is it safe?

Mike says the side-effects of his treatment were worse than either of his two batches of chemotherapy.

Short-term neurotoxicity, where the brain and nerves are affected, can lead to confusion, difficultly speaking and a loss of consciousness.

There are five days after the treatment, when Mike was on intensive care, that he cannot remember at all.

 

Other side-effects include fever, vomiting and diarrhoea.

"It might be a magic bullet, but it hurts," said Mike.

His brain function is back to normal, but Mike says fatigue means he's not ready to go back to work.

How much does this cost?

This truly personalised medicine - made from and for each individual patient - is unsurprisingly expensive.

The official list price for this CAR-T therapy, called Yescarta, is more than £280,000 per patient.

A deal has been struck between NHS England and the pharmaceutical company Gilead Sciences, but how much this is costing remains confidential.

Simon Stevens, chief executive of NHS England, said: "CAR-T shows huge promise and it is fantastic to see that patients in the NHS are among the first in the world to benefit.

"The start of this treatment marks the beginning of a new era of personalised medicine."

 

Does it work for other cancers?

CAR-T has so far shown the most promise in blood cancers including types of lymphoma and leukaemia.

The first NHS patient to receive it was 11-year-old Yuvan Thakkar, who has a form of leukaemia.

"Solid cancers" - those that form tumours like lung cancer or melanoma - have been more challenging.

 

One reason the blood cancer work has been easier is down to acceptable collateral damage.

CAR-T cells have to target proteins that stick out from the surface of a cancerous cell.

Cancerous B-cells (a type of immune cell in the blood) have a protein called CD19 on the outside, but so too do healthy B cells.

So CAR-T therapies that currently target CD19 are wiping out healthy and cancerous cells.

This is an acceptable amount of collateral damage as the rest of the immune system is still there and drugs can help plug the gap.

The same is not true in other cancers - you cannot destroy the lungs to kill lung cancer, or the skin to kill melanoma.

So more precise targets are being developed and are entering clinical trials.

 

 
Sorry if it's a bit long, but hopefully it signals the start of cunting cancer in the bastard.
 
By the way,  I'm going to speak to my McMillan person to see if they want to take our TLW motivational phrase for their next campaign.
 
McMillan, cunting cancer in the bastard
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2 minutes ago, Jarvinja Ilnow said:

I wouldn't say it's 'nice' to read this, but it totally resonates! Who knew so many of us were going through this shit?

 

It shouldn't really be much of a surprise though: I read that cancer will now affect one in two people born after 1960. Talking to a chemo nurse, and he said he reckons it's all the chemicals we use for cleaning, and in our daily lives, that might have triggered dormant cells. There was also that poor sod who did the class action in the US - he was a gardener who used Round Up for weeding - and he won the case.

 

On a positive note, watching BBC Breakfast the other day and saw this:

 

https://www.bbc.co.uk/news/health-48706822

 

 

'Living drug' offers hope to terminal blood cancer patients

By James GallagherHealth and science correspondent, BBC News
 

NHS patients with lymphoma have for the first time been given a pioneering treatment that genetically reprogrammes their immune system to fight cancer.

Mike Simpson, 62, from Durham, says his cancer is now "on the run".

The therapy, called CAR-T, is a "living drug" that is tailor-made for each patient using their body's own cells

Doctors at King's College Hospital, London, said some patients were being completely cured in a way that had "never been seen before".

How does the treatment work?

CAR-T is the pinnacle of personalised medicine as it has to be developed for each individual patient.

Firstly, parts of the immune system - specifically white blood cells called T-cells - are removed from the patient's blood.

They are frozen in liquid nitrogen and sent to laboratories in the United States.

There, the white blood cells are genetically reprogrammed so that rather than killing bacteria and viruses, they will seek out and destroy cancer.

They are now "chimeric antigen receptor T-cells" - or CAR-T cells.

 

Millions of the modified cells are grown in the lab, before being shipped back to the UK where they are infused into the patient's bloodstream.

The whole manufacturing process takes a month.

As this is a "living drug", the cancer-killing T-cells stay in the body for a long time and will continue to grow and work inside the patient.

Who is benefiting?

Mike Simpson was one of the first NHS patients to be treated.

He was diagnosed with large B-cell lymphoma - a type of blood cancer - in 2015 when he returned from a holiday with a stiff and swollen neck.

Two bouts of chemotherapy initially controlled his cancer, but each time it returned.

By the end of 2018, he was given less than two, unpleasant and probably painful, years to live.

"If this treatment wasn't offered to me, I'd be saying goodbye in a relatively short period of time," he told the BBC.

He started the treatment in February and follow-up scans show the CAR-T therapy is working.

He added: "I feel the treatment really is being effective, that we've got the cancer pretty much on the run.

"Obviously I'm really happy about that and optimistic for the future and glad that I committed to the treatment."

However, it is still too soon to know whether the therapy has been completely successful.

Up to 200 patients a year like Mike could benefit from the therapy.

 

How effective is it?

This is a new therapy and very long-term data is still lacking.

Clinical trials have shown that 40% of patients had all signs of their otherwise untreatable, terminal lymphoma eliminated from their body 15 months after treatment.

"It is a very exciting new development and it gives new hope to a lot of our patients," Victoria Potter, consultant haematologist at King's College Hospital told the BBC.

She added: "It's amazing to be able to see these people, who you may have not been able to give any hope to, actually achieving remission.

"And that is a situation we have never seen before and it's an incredibly impressive change in the treatment paradigm."

 

Is it safe?

Mike says the side-effects of his treatment were worse than either of his two batches of chemotherapy.

Short-term neurotoxicity, where the brain and nerves are affected, can lead to confusion, difficultly speaking and a loss of consciousness.

There are five days after the treatment, when Mike was on intensive care, that he cannot remember at all.

 

Other side-effects include fever, vomiting and diarrhoea.

"It might be a magic bullet, but it hurts," said Mike.

His brain function is back to normal, but Mike says fatigue means he's not ready to go back to work.

How much does this cost?

This truly personalised medicine - made from and for each individual patient - is unsurprisingly expensive.

The official list price for this CAR-T therapy, called Yescarta, is more than £280,000 per patient.

A deal has been struck between NHS England and the pharmaceutical company Gilead Sciences, but how much this is costing remains confidential.

Simon Stevens, chief executive of NHS England, said: "CAR-T shows huge promise and it is fantastic to see that patients in the NHS are among the first in the world to benefit.

"The start of this treatment marks the beginning of a new era of personalised medicine."

 

Does it work for other cancers?

CAR-T has so far shown the most promise in blood cancers including types of lymphoma and leukaemia.

The first NHS patient to receive it was 11-year-old Yuvan Thakkar, who has a form of leukaemia.

"Solid cancers" - those that form tumours like lung cancer or melanoma - have been more challenging.

 

One reason the blood cancer work has been easier is down to acceptable collateral damage.

CAR-T cells have to target proteins that stick out from the surface of a cancerous cell.

Cancerous B-cells (a type of immune cell in the blood) have a protein called CD19 on the outside, but so too do healthy B cells.

So CAR-T therapies that currently target CD19 are wiping out healthy and cancerous cells.

This is an acceptable amount of collateral damage as the rest of the immune system is still there and drugs can help plug the gap.

The same is not true in other cancers - you cannot destroy the lungs to kill lung cancer, or the skin to kill melanoma.

So more precise targets are being developed and are entering clinical trials.

 

 
Sorry if it's a bit long, but hopefully it signals the start of cunting cancer in the bastard.
 
By the way,  I'm going to speak to my McMillan person to see if they want to take our TLW motivational phrase for their next campaign.

I saw about that tailored drug on BBC news the other day. It certainly seems there are breakthroughs everywhere. We need to make sure they're affordable though, as the NHS isn't always funding everything because of cost. I was shocked to know even as something as "old" as radiotherapy is something that is funding dependent on time and location. Sometimes it's there, sometimes it's not. . 

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5 minutes ago, General Dryness said:

100% with you Mr Wom. 

 

YNWA isn't just four letters round here.

This goes also for Jarv or any other brave buggers fighting the good fight. 

 

I should look at this thread more often.

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