Seanty's experiences with Metastatic Malignant Melanoma.
Part of www.mymalignantmelanoma.com.
Email us direct at firstname.lastname@example.org
Gleevec (aka Imatinib) phase 2 trial results
are in. None too promising.
Isn't really a patient or carer's blog, so it cant go on our blog page, but the AOL Cancer Blog has a melanoma section here
. Doesn't seem to have been much action in the last year though...
So typical of melanoma resources, out of date....
We've got some Melanoma stories
up now, and a few blogs
, just waiting on confirmation of accuracy of advice, and away we go with publicising the site.
We are looking at starting a charity to find out exactly what factual information and support patients and carers want, and trying to make sure they can get it.
Professor Thomas of the Royal Marsden is going to check the site for factual correctness, and we should be ready to go.
We are still short a few melanoma stories, but hopefully some of my fellow visitors to the melanoma board
will come through for the site...
I was diagnosed back in March 2006 with a nodular Malignant Melanoma, which went from stage 2 to stage 3 quite rapidly during treatment.
I have had a number of operations, including a sentinel node biopsy and a lymph clearance, and have been free of detectable disease since June 2006.
I had to work the system quite hard to get treatment approximating the NICE guidelines, and was upset by the lack of information given to me on my condition. I was further upset by NHS professionals suggesting to me that I was out of conventional alternatives, and that I should pursue worthless alternative techniques like the Gerson diet.
I have learned since then that the provision of no useful information is all too common for melanoma patients. I have been trying to do something about this on the Melanoma Blog for some time, but contact with Katie Taylor's mum and dad spurred me on to try to create a place on the web where solid information, and links to sources of help and support was available. This is it: www.mymalignantmelanoma.com
In researching this, it turns out that there are such resources already, but no-one I know with melanoma knows much about them.
There is a support helpline for melanoma patients and carers here
There is a source of evidence based advice here