Seanty's experiences with Metastatic Malignant Melanoma.
Part of www.mymalignantmelanoma.com.
Email us direct at firstname.lastname@example.org
I received a communication from a blogger who has survived stage 4 MM since 2009, (an increasingly common class of people since the new drugs came in).
"I wanted to
add your link to my page.. www.survivingmelanoma.com. I am
a stage 4 melanoma survivor and was given 6-9 months in 2009 June. I have been
NED for over 3 years and 4 months.
need to add international links because I have received several e-mail questions
about treatment centers in Europe and elsewhere for clinical trials. Would you
have any resources you would share? We have www.cancer.gov to look up clinical trials.
I also had a question..how many stages of melanoma do the medical society
use over there...we only have 0, 1,2,3,4 and I noticed someone posted
“stage 5”...here in the US we don’t have a stage
Last things first, the post about stage V MM
was missing an "I", it was supposed to be stage IV. If there were a stage which was classed as V, there would usually only be one thing you could do, to quote Miracle Max
: "Go through his clothes and look for loose change". Apologies for this, and for my gallows humour to anyone who doesn't share it.
As far as resources are concerned, I believe that the best place to look at them moment for links is the MIF forum here
.The MRF/MPIP forum allows posting of harmful nonsense about alternative medicine, and what is effectively advertising for Mexican quack clinics and I would strongly disrecommend it.
I am unaware of any private clinics in the UK which are as good as the NHS centres of excellence: Christies in Manchester and The Royal Marsden in London amongst other places. NHS treatment away from these centres of excellence can be poor, and the new drugs may not be offered. Before the new drugs, surviving Stage 4 for a year was very rare indeed.
Blue Sky Day by YOU62 has just been listed on i tunes- presumably
amazon will follow shortly. If you buy, watch out as there are several
songs with the same name by different artists.
There are also a
limited number of hard copies of the CD for those who prefer the old
ways- £3- per copy (plus £1- for postage). Let me know if you want one.
Labels: Blue Sky Day YOU62
Christie Hospital's Young Oncology Unit has a music therapy unit attached, which is where the band met. Peter Garner, a young stage 4 MM patient (see Sarah's Story
) has been nicknamed Borg for years, but
now he is wheelchair bound he adopted the name Borg Ironsides.
have produced a single, which will go on sale on 21st July, and is
available to download on Amazon and Itunes. There will also (hopefully )
be CDs available, but funding needs to be arranged before they can be
It has already been played on ITV and BBC, and a full radio
interview is available here
The single can be heard at 5.36 of that interview., and there are other YouTube clips with videos.
proceeds will go to the Teenage
Cancer Trust- aimed specifically at cancer patients between the ages of
16 and 24. Its aims are to improve the quality of life for them, both
during and after treatment. I know the music unit has been a godsend to
would be most grateful if you could publicise this as much as possible, and buy the single on release! There will be a video to go with it..
The aim is to raise money for a larger music unit. The current one is a
little cramped to say the least.