Tuesday 28 August 2012


I am happy to be in a position to confirm that a new UK study will look at active surveillance for Li Fraumeni Syndrome patients. The SIGNIFY study, which is now at the final stage of approval, is being run by the Institute of Cancer Research and will initially be available at two centres, Manchester and the Royal Marsden. The protocol will look at the effectiveness of annual whole body and brain MRI scans in confirmed LFS patients. A secondary part of the study will look at the psychological impact of screening.

Recruitment to this new study hasn't started yet, and there is a possibility that it may change slightly before it gets complete approval. As soon as the trial is confirmed and we have some more concrete information details will be posted here. The people running the study are in touch with the George Pantziarka TP53 Trust and will keep us informed.

Aside from anything else, this is a good example of how the forum on the Trust's web site is turning into a valuable tool. The first mention of the proposed trial surfaced there last week, and now we have official confirmation. Thanks to all those who first raised the alert.

Thursday 16 August 2012

Peripheral Neuropathy and Chemotherapy

Side effects from chemotherapy can often be worse than the symptoms of cancer itself - as many patients know, and as we know from our experiences with our son George. For taxane-based chemotherapy, such as Taxol, Paclitaxel and Docetaxel (which is one of the drugs that George had), one of the worst side effects is called peripheral neuropathy. This involves nerve damage, particularly in the hands and feet. It usually manifests as tingling, numbness, burning or pain, but can also involve blood pressure changes, balance problems, constipation and a range of other problems.

It can be severe, and in our case it got so bad that George ended up having to come off treatment, with disastrous results in the end. Again, this is common, and so-called 'dose limiting toxicities' mean the treatments are scaled back or stopped, even when they are showing some signs of effectiveness. Obviously, finding good ways to stop the side-effects means that patients can continue with treatments, and also their quality of life doesn't descend into misery.

Which makes the results of a recent clinical trial worth noting. This was a randomised placebo-controlled trial - which means some patients got the treatment and some got a dummy pill and then the two groups of patients were compared to see what difference the treatment made. The trial was specifically looking at peripheral neuropathy in cancer patients being treated with Paclitaxel. And the treatment being tested? Omega-3 fish oil capsules three times a day. Yep, good old fashioned fish oils rather than some fancy new drug.

The results? 70% of the fish oil patients didn't get peripheral neuropathy, will in the control group it was only 40% that didn't. Not only that, there was a clear tendency for the symptoms to be less severe in the fish oil group for those patients who did suffer some symptoms.

Given all of the other positive benefits of fish oils, this is certainly a study worth bringing to the attention of your oncologists if you're being treated with Paclitaxel or other taxane-based drug. Let's hope that the trial is replicated soon so that results are confirmed.

Anyone looking for the details should take a look at the (open access) paper reporting the result here: http://www.biomedcentral.com/content/pdf/1471-2407-12-355.pdf

Monday 6 August 2012

Fighting Cancer?

I've written before about the metaphor of a "war on cancer" - not a phrase I find particularly helpful. One aspect of this "war" is that patients are seen as in a personal battle with the disease. They are in a fight with cancer - the disease is at war with them - and the weapons in that war are toxic treatments like chemotherapy, radiation and radical surgery. I don't think these are useful images and are more likely to inspire horror than hope.

I am reminded of all this by reading a really interesting blog post from a person with Li Fraumeni Syndrome and who currently has a rare form of cancer called Leiomyosarcoma,. The blog is called 'Always Look On The Bright Side...' - and the post on 'Fighting Cancer - A Personal View' is well worth a read.