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PanP
KeymasterHi Surinder. Best of luck with TACE. As an alternative to pazopanib have you looked at a metronomic chemotherapy protocol?
KeymasterSo sorry to hear that Surinder. Let’s hope that the pazopanib is effective.
Pan
KeymasterWell, fingers crossed then. When do they make the decision?
Pan
KeymasterSurinder, have you looked at mindfulness meditation as an aid to stop the mental pain and anguish you are going through? I know from my own experience it works, and there is plenty of medical evidence that it has a direct effect on stress hormones. There are measurable effects in the body and these are all positive against cancer.
Pan
KeymasterHi Surinder,
Is it not possible to ask for the chemoembolisation treatment off-trial? Sometimes it’s possible to get a treatment on a ‘compassionate use’ basis. It would probably need a bit of a push from you and your team to get it, but there’s no harm in trying.
Pan
KeymasterHi Patti. First off let me say a big welcome. You are not alone – though it can feel that way sometimes. There’s a lot of information to take in at the beginning – so take things slowly. We’ve got a lot of info on the site which should be useful – and if there’s anything unclear or missing then please go ahead and ask.
You obviously also need to get your children tested as soon as possible. By the way, I think you’ve got a really sharp doctor for recommending you get tested.
KeymasterI wouldn’t think you’d have to wait that much longer now. The average seems to be around 12 weeks in the UK. Fingers crossed you don’t have the mutated version of the TP53 gene. But if you do, welcome aboard, you’re not alone…
Best wishes,
Pan
KeymasterHi Surinder. Are you stopping the gem/tax permanently or is it temporary until the lung inflammation reduces?
KeymasterI’ll try and see how far I get…
Pan
KeymasterYou mean http://www.lfsassociation.org/? I haven’t had contact with anybody associated with them for a while – which is silly really. I’ll drop them a line – their website has come on a long way since I last looked at it.
Have you, or any other forum member, had much contact with them?
Pan
KeymasterIt’s a sijmple idea really. Science is uncovering more and more functions of TP53 over and above the apoptopic machinery. I want to figure out how these apply to LFS and cancer, and then with that see what interventions are required to reduce the risk of carcinogenesis.
Pan
KeymasterI know what I think the most important thing is – research into active cancer-prevention in LFS. This is a big step on from looking only at active surveillance to catch cancer early. This is something that the Trust wants to major on – and which we are gearing up for at the moment…
Pan
KeymasterWell, we intend to be a research charity among other things! For now there seem to be very few groups looking at LFS particularly, rather than at TP53 in general. There’s Farazana Walcott at the NIH running a trial of metfomin in LFS, but other than that the focus in much LFS research is on surveillance protocols (for example the SIGNIFY trial in the UK).
Pan
KeymasterI think this is a really good idea. Do you have some listed already that we can use to start off with?
Pan
KeymasterWell, I hope that they do come back with a good result for you and in less than 12 weeks.
By the way, how did you find us? A quick Google or were you pointed in our direction by someone at the clinic?
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