My Malignant Melanoma

The MIF have a new blog here. The doctor is in, as they say.

Labels: information, Melanoma

That thing I thought was nothing in my last post was indeed nothing. Not having cancer is nowhere near as exciting as having it. I don't miss it though.

Had my yearly check-up yesterday. There is something, (probably a wart) next to my excision scar, and the dermatologist would like to cut it out and have it checked for MM.

Can't get too excited about it...

I see Cancer Chat are still allowing the notorious cancer board troll "Peter 12" to post silly diet advice on their boards. Peter, aka Alex aka Sylvana aka Alain23 aka Ladylady aka Sabina on other cancer boards posts garbled nonsense in a style which suggests they are not a native speaker of English on as many boards as they can.

I don't think of melanoma very often nowadays. I'm still NED, and they have so many new drugs for MM now that recurrence / stage 4 MM would be a completely different thing from what it was just a few years ago.

I am in touch with a number of people around the world who have survived stage 4 for years, and are now NED.

This didn't used to happen back when I was diagnosed, when you were diagnosed with stage 4 MM you were toast. People seemed to last a few months, and as soon as they had brain mets they lasted weeks.

Labels: Stage 3 melanoma survivor

The melanoma board run by scansol is no longer being looked after by the company, and appears nowhere on Google. I have been acting as an unpaid moderator against the tidal wave of kitchen spam for some time now, but recently I gave up in the face of the indifference of the owners.

It is hard to see it so full of spam when it was so useful to me back when I was diagnosed, and it still has posts from JohnDerby, Alison, and others who were helpful to me, but died of MM but I feel a little foolish keeping a forum clean for owners who don't seem to care.

In any case, MIF have a far superior forum, kept clean of altie nonsense without any effort on my part.

As usual, my ultrasound scan yesterday showed no sign of MM, just some new scarring. They couldn't even find anything to do a fine needle aspiration on, so that's an experience missed out on.

So I had a bit of a lump in my armpit when I had my follow-up in London last week. An ultrasound was promised within a fortnight, but no appointment yet.

Mild annoyance rather than the panic I would have had five or six mystery lumps ago...

Bugger Melanoma!: My top tips for hospital stays: Bring a laptop/dvd player and plenty to watch for when you're in bed and a portable mp3 player for when you go on exercise walks...

Have you tried claiming to be rastafarian? They have to bring in caribbean takeaway....  

The MIF site has grown into the best MM site on the internet now. Though US based, they have moderated out all of the altie nonsense and bible-bashing which you used to see on the MPIP site. I actually more than once saw declared paid employees of Mexican quack clinics being allowed to promote their worthless "treatments" with lies on MPIP. Not helpful.

I'm afraid to say that the Scansol Melanoma Board isn't being very well looked after by its owners nowadays. I'm deleting half a dozen (mostly kitchen) spammers per day for them, but I can't get a reply out of the web admins to my requests to tighten up on new accounts.

Labels: Board, Chat, Melanoma

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.

I 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 5"

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.

They 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 made.

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.

All 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 Peter's family.

I 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.

There's a new melanoma story in the In Memoriam section: Ben's story

I'm told that the hottest new prospects for MM treatment at last week's ASCO conference were thought to be:

1. Combination therapy of BRAF and MEK inhibitors from GSK (Tafinlar/dabrafenib plus Mekinist /trametinib) - headline: resistance only develops after 9 instead of 6 months

Labels: Dabrafenib, ipilimumab, Lambrolizumab, MDX-1106, Mekinist, New melanoma drugs, Tafinlar, Trametinib, yervoy

Labels: BRAF, CTLA-4, Dabrafenib, ipilimumab, Lambrolizumab, LGX818, MEK, Mekinist, MK-3475, Nivolumab, PD1, Tafinlar, Trametinib, vemurafenib, yervoy, Zanolimumab, zelboraf

I'm told that UK trials of the new and highly promising PD1 antibodies for treatment-naive patients with advanced melanoma start in the next few weeks at Royal Marsden, Manchester and Southampton.

Labels: clinical trail, Lambrolizumab, Melanoma, Nivolumab, PD-1

Saw in the New Scientist today that there are a number of really promising new drugs for MM coming through: Lambrolizumab and Nivolumab, which both work on the PD-1 receptor, and a so far unnamed drug which works on another receptor.

All give great reductions in tumour volume, and there all in all cases apparent complete cures. They all work by rebooting the immune system, in just the same way as quack diets claim to do, but actually don't.

In other news, it seems that mucosal melanoma is really a different disease from cutaneous melanoma.

Labels: boosting, immune system, Lambrolizumab, Malignant, Nivolumab. melanoma

Prompted by an email from Mark in the US, a long term Stage IV melanoma survivor (thanks to Zelboraf) who has been writing to me for a while, I thought I'd update the blog.

I've got a new job in a local University, which I have being doing alongside most of my old job, so I have been wildly busy for the last couple of years.

I've dropped most of my melanoma care, as nothing has shown despite a number of scares which I have related on here. I'm going to a yearly appointment which I have kept on at the London hospital which gave me my SNB  in Autumn.

My armpit where they removed the lymph modes feels a bit swollen recently, but I've though that before and its turned out to be nothing. Its hard to remember where the lumps from scar tissue are supposed to be, and at worst it's probably a seroma or lymphoedema.

I'm considering going to the docs if it doesn't sort itself out soon, but I'm not as panicky now after all the scares I've had, especially now there are some drugs and other treatments which can help MM patients.

I got a message from "That's Life" magazine recently. If you are a woman who'd like them to feature your MM story, contact me (apparently the only way men can feature in That Life is on the Aren't Men Daft page. They are willing to pay for your story. Follow the first link above to get an idea of the line they are likely to take.

Over on the melanoma patients board, many of the new people signing up on this site are spammers employed by kitchen companies. I ban at least one a day, sometimes six or seven.

The main one is "solid wood kitchens" who have lots of websites, for example http://www.solidwoodkitchens.com - phone number 01512 032 895. I phoned them to ask them to stop, but if anything the volume of spam went up. A look at the web shows that this is usual. There is no point in calling to complain to these people.

However, the person registered as responsible for originally registering the the domain is:

Aftab Ali
Trading as:
Sizzle Media Ltd
Evans Business Centre
Rochdale
Lancs
OL12 6XB
United Kingdom
http://www.sizzlemedia.co.uk

Elsewhere on the 'net he admits he set it up but takes no responsibility, blaming search engine promotion companies overseas. Mr Ali claims that the real client is:

Laura Digweed
41 Duke Avenue
Manchester
Lancashire
OL12 7HJ
United Kingdom

But sometimes Mr Ali has been shown as the registrant at this address - all very confusing.

The up-to date named contact is however M Leak - same Duke Avenue address. His website is at http://matthewleak.co.uk. (If I were as rubbish as he seems to be at web design and wanted to sell myself as a web designer I'd have got someone else to design my personal site)

There are contact details if you follow the link - feel free to let him know how you feel about his activities.

Then there are the companies with various website and company names with phone numbers 01616694780 and 01416116995. Whilst they have similar tactics, they seem to be spammer/scammers of a different calibre entirely.

These numbers have been linked to "The Kitchen Gangster" Vance Miller, subject of a number of consumer TV, trading standards, and police investigations. He has convictions for kidnapping and affray, and is currently banned from being a UK company director.

A judge described him as “intelligent, cunning, manipulative but above all arrogant”. Probably not worth phoning him up then - best stick with the chumps from solid wood kitchens.

Labels: 01416116995, 01512 032 895, 01616694780, kitchen spam, solid wood kitchens

Rory's Story Update. A little late due to computer problems....

Labels: BRAF, Clinical, Dabrafenid, MEK, melanoma stories, survivor, Trametinib, Trial, zelboraf

I received the following message from someone whose website describes her as a home-schooling mother:

"I was reading on the American Cancer Society about alkalizing and cancer. They stated that it was found to be of benefit to alkalize your body to inhibit cancer. My father in law started doing it 10 years ago and is 8 years past his death diagnoses for Multiple Myleloma. Why do you say it does not work? on Tullio Simoncini"

I get lots of these. I never publish them as comments because they have links in them to quack sites. This one is however extra-stupid. None of those vague and hard to disprove claims for this home-educator. I am not in a position to verify their anecdote, but I can fact-check the rest of it.

So does the American cancer society recommend alkalising your body? Here are their diet and exercise guidelines. No mention of alkaline diet there, or anywhere on their website. The internet is however full of quacks and their dupes claiming the ACS as the primary source for this nonsense - but it just isn't true.

In fact I didn't really need to check, as it can't be true, because the ACS employs scientists and doctors who know that there is no diet which can alkalise the body. Alkaline Diet is nonsense, and Tullio Simoncini is a convicted fraudster, barred from practising medicine after his conviction for the manslaughter of a patient in his "care".

There is no mention anywhere in the publications of the ACS or any other reputable body of a diet which can reverse cancer, these are the usual "healthy eating" guidelines intended to reduce the risk of cancer. There is in fact no diet known or even suspected of being able to reverse cancer of any kind, though the web is full of such nonsensical claims.

Alkaline, Budwig, Gerson, and the rest of the quack diets are promoted by scum who prey on cancer patients, and supported by muddle-headed fools who think we should treat all opinions as equal, whatever the supporting evidence.

Even after bottom-feeding vermin like Simoncini have been struck off, convicted as killers and fraudsters, morons stick up for them.

Why do I say it does not work? Leaving aside for a moment the fact that I am not obliged to disprove  false medical claims, but their proponents to prove them - try this list of a few of Simoncini's victims. It includes details of how much this killer charges the victims of his fraud.

Labels: alkaline, Alternative, quack, Tullio Simoncini

There is an update to Sarah's story of her son's continuing battle with stage 4 MM here.

Labels: ACT, Adoptive Cell Therapy, melanoma stories, Stage 4, survivor, TILS

So the lump is a hernia, and the new mole on my foot only referred for dermatologist to have a look at because of my history. No worries, I'm used to this stuff now.