[PanP]

Being a parent having to watch your child go through cancer is a nightmare, Helen, but there are lots of us here who have gone through this and know what you’re going through too. We’re all thinking of you.

Pan

[PanP]

Believe me, your English is better than my German!

[PanP]

Hi Sonja,

I will be contacting people at the Marsden and some contacts I have in Manchester to see if we can get some official confirmation of a trial and what the details are. As soon as I have anything I’ll post it here.

Pan

[PanP]

Hi Sonja. What a terrible story! If it was a film people wouldnt believe things could be so terrible. Now that you know you have LFS is there much information or support in Germany?

[PanP]

Hi there. Welcome aboard. Like Portugal there’s not much information here in the UK on LFS – but we’re working to change that!

Keep us posted on how things go. If you look on the forum you’ll see a number of members who’ve either had protective mastectomies or are waiting to go….

All the best,

Pan

[PanP]

Hi Sue,

Thanks for the update. Glad you’ve made some progress, though your GP doesn’t sound especially supportive. Please keep us updated on how things progress. It seems to me that different people are being told different things about screening depending on who they see. It’s ridiculous that something so important should be down to pot luck.

I hope other people on the forum who’ve had recent experience can offer some advice. Maybe we need to put together some kind of list of who’s managed to get what…

Pan

[PanP]

Paul, thanks for the pointer to the breast cancer paper, it looks interesting.

While I like the idea of drawing up a list of papers or a database on what treatments are impacted (or not), by p53, the reality is that things are far more complicated than they seem (which is complicated enough as it is). For example, I always assumed that LFS patients would have tumours that were lacking p53 completely, but according to my interview with Galina Selivanova ([url=http://https://www.tp53.co.uk/index.php/interview-with-galina-selivanova]https://www.tp53.co.uk/index.php/interview-with-galina-selivanova[/url]) this isn’t the case. Mutated p53 can provide a survival advantage to tumour cells, so LFS patients, like all cancer patients, might have tumours swimming with mutated p53 rather than no p53 whatsoever. All this makes working out which drugs or treatments are more or less likely to work with LFS patients incredibly complicated.

Further down the line I think we’ll come to the point where there are drugs like PRIMA-1 which will convert mutant p53 into ‘proper’ p53, and that these combined with standard treatments will make a huge difference.

In the meantime, I see from your blog that you’ve decided to cut down on oily fish as that’s a potential problem with some drugs. Do you have a reference for that? I’d like to follow up because most work that I’ve seen says the opposite – omega-3s are essential…

PS – Feel free to drop me an email (anticancer.org.uk at gmail.com) if you want to talk about stuff but not on the forum.

[PanP]

Hi Paul,

Welcome to the forum. I’ll take a look at your blog, but in the meantime I think I can at least point to some answers about LFS and responses to cancer treatments…

Cancer treatments that directly target tumours – like a lot of chemotherapy drugs, radiotherapy, photodynamic therapy etc – can kill tumour cells via different mechanisms. Some treatments kills cancer cells via necrosis – the cells are killed instantly – others damage the cells in different ways which trigger a form of cell death called apoptosis. With necrosis the cell is killed instantly and unavoidably, the cells burst or implode. With apoptosis a controlled process of cell death is kicked off and p53 is central to it. Without p53 the process that leads to cell death doesn’t complete and the cancer cell survives.

As I understand it, normally people with LFS produce enough p53 to make sure that apoptosis can happen. But within a tumour the TP53 gene may be further damaged so that no p53 is produced, or else the p53 that is produced is mutated in some way and doesn’t function properly. If this happens then treatments which primarily depend on apoptosis to kill tumours may not function as well as expected.

Newer treatments exist which don’t depend on apoptosis but either block growth pathways, exploit necrosis or engage other mechanisms to control tumour growth. In theory these kinds of treatments should act the same whether you’ve got a functioning TP53 gene or not.

I hope that makes sense…

[PanP]

[quote=”Shoonu” post=63]BTW Hello to Sonja an Pan![/quote]

Hi Shoonu!

[PanP]

The leaflet is now ready and has been published here: [url=https://www.tp53.co.uk/index.php/lfs-leaflet]https://www.tp53.co.uk/index.php/lfs-leaflet[/url]

I had been hoping to have had the text verified by now, but hopefully that’ll follow soon. I’ll do an update once that comes through.

Thanks all for your feedback. Obviously please let me know if you see any errors or have ideas of how we can improve on it. And, most important, please let everybody here know whether it works in practice (or not!)

[PanP]

Thanks for the feedback, Sonja. i hope the leaflet will work in the situation you describe.

I think your point about damage to both copies of the TP53 gene is probably too detailed for the leaflet but we should add something on it to the FAQ.

Pan

[PanP]

thanks, Pen

[PanP]

good point. I’ll see if I can sort that out.

[PanP]

Sue, I’ll make sure you have a copy before the 20th. And I’ll see if i can get a medic to give a seal of approval…

[PanP]

Hi Karen,

Did they offer you any alternatives to surgery? There have been numerous clinical trials looking at chemoprevention for women with a very high-risk breast cancer – not just LFS but BRCA1/BRCA2 or a familiy history of elevated risk. Drugs that have been used include things like statins (Lovastatin, specifically), Metformin, beta-blockers and more traditional drugs like Herceptin or Tamoxifen.

Pan

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