[PanP]

Hi.

12 weeks is about average – sometimes it can come a bit sooner, but not by much. Whereabouts are you in the country?

Pan

PS – Welcome aboard…

[PanP]

Hi Sunny,

What this means is that the TP53 mutation that you have they’ve seen before in cancer cells, but they’ve never seen it before in a germ-line mutation (i.e as an LFS mutation). They ought to now upload your case to the IARC TP53 database so at least it’s recorded. I don’t think it’s the sort of thing that would make a material difference to treatment, which is priority number one.

Pan

[PanP]

Liver MRI is recommended for people with LFS compared to x-ray or CT scan. It doesn’t carry the radiation risk and it gives clear indications of what’s going on in a tumour. As for worrying about future cancers from your current chemo, there is a risk for sure, but these risks are for new cancers 10 years or more from now. In the meantime you have a problem that you have to get rid of [b]now[/b], and unfortunately chemo is one of the best weapons we’ve got, despite all the downsides.

Pan

[PanP]

Surinder, scanning after 3 cycles is standard for the treatment you’re on. It may well be that it your oncologist will be better able to interpret the scan result because he/she knows what to expect after three cycles. This may well be important in terms of classifying the response as complete/partial/stable/progressive and in terms of disease staging. If the norm is to stage after 3 cycles then doing it sooner might be something your oncologist is unhappy doing.

Personally, I think that if your tumour is responding to treatment then that response will be there after two cycles. I suspect though that your oncologist will resist scanning early…

Pan

[PanP]

Hang on in there, Surinder. When do you have your next set of scans?

Pan

[PanP]

Sally, the link to my paper is here:

http://www.cancerci.com/content/13/1/35

A less technical version is published here:

Click to access 88_JA13_Li%20Fraumeni%20Syndrome.pdf

[PanP]

The feedback was that there was no problem with the scientific rationale or the proposed daily dose of metformin. What we failed to do was to provide convincing evidence that we could recruit enough study participants to be able to give a scientifically valid result in 3 years. The metformin trial in the US isn’t about long term cancer prevention in LFS, it’s more about seeing what short term dosing of LFS does to certain insulin related measures in the blood (I’ve written an article on this, just waiting for some feedback from the lead investigator in the US before I publish).

Metformin isn’t the only active measure that I have in mind – there are others, like daily aspirin for example, but there’s much less evidence that I can call on to justify that. For metformin there’s a few good pieces of evidence and there’s the paper I published on LFS where I try and put it into context.

In the meantime I’ve had some successes in helping LFS patients persuade their oncologists to add metformin to their cancer treatments. It’s a start and it certainly feels to me like oncologists are becoming more willing to consider it seriously.

[PanP]

Hi Karen,

We (the GPTP53 Trust and Professor Gareth Evans at Manchester) actually put together a bid for a long-term cancer prevention trial using Metformin. Unfortunately we didn’t get the funding but the plan is still there and I hope we can go back to it soon. On the US trial I have been in touch with the lead investigator recently and will be posting an article about the trial soon.

I think for me personally, the big message isn’t necessarily about metformin, it’s that there are active measures people with LFS can take to reduce cancer risk. It’s something I really believe and want to address in my own research – but that research takes time, particularly as I’m not a full-time researcher…

Pan

[PanP]

Is it the doxorubicin?

[PanP]

Is it the doxorubicin?

[PanP]

Unfortunately kids are not included. However, there are some parents who’ve managed to get their kids a similar level of screening but it’s down to the individual genetics clinic rather than being part of the trial.

The big hope is that we can get this for all children and adults in the future.

[PanP]

Best of luck! And what a great testament to the value of SIGNIFY! Here’s to it becoming standard practice for all LFS patients worldwide – children as well as adults!

Pan

[PanP]

Best of luck, Surinder. You know that you have all our best wishes.

Pan

[PanP]

Well, we’re now formally registered and able to accept gift-aided donations. We’ve got agreement with some major research groups to build an official TP53 Registry. But it still feels like there’s so much to do.

You mentioned in one of your posts that you’ve got experience of charities, and I’d be really interested to hear any ideas or suggestions you might have. We’re a small group and really we’ve got so much to learn…

[PanP]

Paul, I got that from a discussion with Professor Nazneen Rahman at the Institute of Cancer Research. But it’s an interesting point worth a bit of additional research I think, so I’ll take a look to see what I can find. I know you’ll do the same, so if you do come up with any references can you post them here?

Pan

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