Damus

Recent Notes

Tim Holyoake profile picture
Some bad news to start 2026 if, like me, you have the rare blood #cancer, Mantle Cell Lymphoma (MCL).

NICE (The National Institute for Health and Care Excellence) have issued Final Draft Guidance that no longer recommends CAR-T therapy (Brexucabtagene autoleucel / Tecartus) for the treatment of relapsed or refractory #MCL in England and Wales.

This is one of very few instances where a cancer treatment made available on the #NHS is now proposed to be withdrawn. This is not because it is ineffective or no longer works, but due to changes in NICE methodology.

Amazingly, even if CAR-T therapy had no associated cost, it would not meet the new NICE thresholds. This highlights a serious failure in NICE's appraisal framework rather than the treatment itself.

The draft decision sends a deeply worrying message to MCL survivors and other people living with incurable cancers: that access to effective treatment can be removed even after it has been proven, adopted and relied upon.

The other options for relapsed patients are very limited, can be more toxic and cause greater #health problems in the long run. But for some people with MCL who have already been through chemotherapy, stem cell transplants and other drugs there is no meaningful treatment other than CAR-T available. The withdrawal of this treatment will exact a large human toll on patients and their families.

Please boost this post if you feel able and, better still, if you live in England or Wales, please write to or email your MP to ask that this issue is raised urgently with NICE, the NHS, their party spokespeople and the relevant government ministers.

Thank you!

Tim.
Tim Holyoake profile picture
Looks like we will get a decent crop of strawberries this year, along with mange-tout, shallots and rhubarb. Carrots are faring far better than last year, but the beetroot in front of them has been an almost total failure. #Gardening #Vegetables #UK




Tim Holyoake profile picture
Clearing out the loft (as you do on a Bank Holiday Monday - Happy Europe Day!) and I came across a 5.25" floppy from 1981 ... full of the first programs I ever wrote on an RM380Z.

I thought it had been thrown away years ago so I'm very pleased to see it again.

It is highly likely to be unreadable as it is very warped and a little damp.

#RetroComputing #RM380Z #z80

Paolo Amoroso · 74w
nostr:nprofile1qy2hwumn8ghj7un9d3shjtnddaehgu3wwp6kyqpqv64s0dfnm03s8ynjplqx9krh32kgv39lx5vh89e5790thwel3ahsg76n3e It brings storage to new heights.