My Malignant Melanoma

Here's a handy thing, a widget which links to up to date info on melanoma.

Labels: information, Malignant, Melanoma

London didn't sign me off as I "knew" they would- there's a tiny nodule in one of my lungs on the CT scan which I was told was clear. They assure me their radiologist says it isn't malignant.

So I'm going to be continuing with the "watchful waiting" protocol. Good to be watchful, but I'm tired of waiting - I'll just get on.

My local hospital discharged me today, and I know London will too when I go down to see them early in the new year. This is what those unfamiliar with cancer call the all-clear. It's a weight off, but though I know it's no all-clear, I feel I can get on with my life.

Reposted from the Melanoma Board:

I hope you will be able to help me with this – http://www.parliament.uk/edm/2010-12/2362

Stephen Gilbert MP has tabled this and I’m so grateful for his support. I wonder if you would mind forwarding this to your MP to see if we can get more signatures? To make it easy for you, you can find your MP here http://findyourmp.parliament.uk/

I know that you know how much work I’ve put into this over the last few years and if it is that this drug can be approved, it will be such a huge lift for all melanoma patients and their families.

It would mean so much to me if you can spare a few minutes to help.

Looks like NICE thought Yervoy (Ipilimumab) wasn't worth the NHS's money:

"Despite the combined value of these factors the Committee considered that the magnitude of additional weight that would need to be assigned to the QALY gains for people with advanced (unresectable or metastatic) melanoma would be too great for ipilimumab to be considered a cost-effective use of NHS resources."

They are inviting your comments. Follow the link above to do so.

Thanks to Sarah for the heads-up...

Labels: ipilimumab, NICE, yervoy

There is a very encouraging update to Sarah's story.

Labels: BRAF, child, inhibitor, Melanoma, story

Ask the BMJ - all evidence is not equal. Rigvir, one of whose paid promoters is currently spamming cancer chat is a case in point. They just won't let it lie, but to everyone except its saleswomen, Rigvir is an untested, unsafe, ineffective live meningitis virus.

Labels: based, evidence, latvia, Medicine. rigvir

Another new story: Thanks Courtney (and mom)

Labels: melanoma stories

Christmas comes earlier every year - here's me plugging Christmas cards (hand-made by the family of a patient) in aid of MM treatment at the Christie Hospital in Manchester. Get'em here.

Labels: Christmas Cards, Melanoma

Aidan has provided his melanoma story for the site. Thanks Aidan!

Labels: melanoma stories

Got my scan results - all clear. That's 5 years NED - I feel lucky when I think of all those diagnosed at the same time or after me who died during those five years - John, Katie, Alison, Kerry, Johnny Deep, Janet - just the ones I knew from the internet.

The Ipilimumab Vemurafenib Combo trial we thought would never happen is on the starting blocks...

Labels: Clinical, ipilimumab, PLX4032, Trial, vemurafenib, yervoy

Letter from the hospital today moving my consultant appointment reviewing my CT scan forward three months. I can't imagine that this is good news, but the NHS will no doubt make me wait.

Luckily I still have a bit of that well person's complacency and denial on my side, but I get my GP to phone them anyway. The scan hasn't been reported yet, so it's an administrator who has decided to get me in quicker rather than a concerned doctor. Scanxiety, eh?

Labels: CT Scan, Scanxiety

Had my CT scan yesterday, then off as has become my tradition for Dim Sum at the New World in Chinatown, which more or less balances things out.

I just need to wait until my consultant appointment to hear if all was OK. I'm not at all worried, I've seemingly gone back to the complacent state of those whom haven't had cancer, believing that all will be OK and it couldn't happen to me.

If this is clear, I'm all done with London. No more Dim Sum and no more cancer. Seems fair.

Labels: CT Scan, Scanxiety

Off for a CT scan in a bit. This might be my last one ever-it's been five years with no sign of recurrence, and if it is clear, London intend to discharge me. Strangely, this piles on the pressure, but I'm no stranger to scanxiety now.

Labels: Anxiety, CT Scan, Scanxiety

There are many cancer message boards on the internet, the better ones ban the promotion of "alternative medicine", and are very careful about claims made for complementary medicine - you might think for example that reiki was just a harmless footrub, until you hear its practitioners claim that they can cure cancer-even over the 'phone.

A big problem with even the most tightly regulated boards is that the moderators do not wish to destroy  hope, even to some extent false hope.

A second problem is the preponderance of middle-class, middle-aged women on such boards. They'd like the rules of the board to be those of the coffee-morning- it's more important to be seen to be nice than to be right, and it's not what you say, but how you say it. Some forums, (which I avoid or quickly get banned from) agree to these rules- such boards become virtually male-free zones in quite short order.

But being seen to be nice is not actually being nice. It's not nice to allow people to think that they can avoid conventional treatment as the quack has their back. It's not nice to allow people to claim that quack diets boost the immune system when they don't, or that you need to pretend to be happy about having cancer or you'll die sooner. 

The nice thing to do is warn people who have been taken in by quacks and are now themselves attempting to promote quackery one warning and them stamp on their arguments every time they make them until they stop.

The nice thing to do with those who practice or promote quackery for a living is split them, salt them and nail them to a fence.

I've been having a low-level row about "Cancer Diets" with a quacktard over on CRUK's cancer chat who has been taken in by the usual dodgy internet sites (particularly "cancertutor" in his case, and just for variety, incorporating quack diets for autism)

As is often the case with reasonably well-moderated sites, he is trying to restrict his claims to that thin-end-of-the-wedge classic: "I'm not saying X (insert name of quack cure here) cures cancer, I'm saying it boosts the immune system".  

So I point out CRUK's advice on this issue, here "You need a balanced diet, with plenty of calories, to keep your immune system working well. This can help you fight off infections, as well as helping your body fight the cancer". I explain that there are no diets or supplements which boost the immune system, and that if there were, we'd all be prescribed them, because boosting the immune system is actually a potential cure for cancer.

There is in fact an immune system booster being trialled as a melanoma cure, Allovectin- 7. It's looking pretty good. So is Allovectin made of carrots? Noni Juice? Soursop? 'fraid not, Its a gene therapy which puts markers on the surface of MM cells so that the immune system can see them.

So we have some new effective drugs for MM which have been free to patients during the clinical trials, but back in the real world, I hear they are likely to cost about £75,000 for a course of treatment.

NICE thinks a quality adjusted year of life is worth around £30,000, so the drugs would have to provide at least a couple of years of good quality life to get past NICE (which they don't on average)

Better start the petition now!

Phase III trial results are in for PLX4032, and they are looking pretty good:  In the study, the risk of death was reduced by 63 percent for people who received vemurafenib compared to those who received chemotherapy. In addition, vemurafenib significantly reduced the risk of the disease getting worse by 74 percent compared to chemotherapy.

Labels: Clinical, PLX4032, Trial, vemurafenib

Remember when I said that it was unlikely that big pharma companies would collaborate to bring us combinations of the effective new Melanoma treatments? I'm glad to report that Bristol Myers and Roche have proven me wrong with their newly announced collaboration, to combine Roche's BRAF inhibitor PLX4032 (now known as Vemurafenib) with ipilimumab (now known as Yervoy) in Phase III trials.

Watch This

Whilst you can believe what you like, there is in fact plenty of evidence that positive mental attitude and attitude have no effect on the outcome of cancer (though of course it isn't science's job to prove every fad wrong).
Every trial which finds no effect on cancer isn't just not providing supporting evidence, it is providing opposing evidence.
For example, dietary Vitamin C has been trialled, and is known not to work. It's not just that it hasn't been proven not to work, so thinking that it might work is supportable - it has been shown not to work. Beta carotene was tested and found to be actively harmful, as was vitamin E.
The informed position here is that the normal dietary recommendations, without any dietary supplements, or the elimination of any dietary component is what is recommended for cancer patients, and that if there are any circumstances in which a special diet is needed, the patient will be told by their care team. Patients should discuss with that team any supplement they are thinking of taking or diet they are thinking of trying, not anonymous people on the internet who might be healthy but bored teenage kids or alternative medicine practitioners for all we know.
Positive mental attitude has no effect on the outcome of cancer, and research suggests that the best coping style for the patient is their usual one. If you are usually sunny in disposition, go with that, but being admonished to keep smiling when you feel like crying is not encouraging but oppressive. It sounds great saying you need to have a fighting attitude to cancer, but my friend's 15-year old daughter died of MM - didn't she try hard enough to live?
Perhaps this is why I so often see the relatives of those with cancer as the foremost proponents of PMA on cancer boards. As you point out, we wouldn't want to be overwhelmed with negative emotions, and of course we all try not to be, and to protect those who care for us from our darker moments. But for those of you who haven't had cancer, let me tell you, it can be a bit of a downer. I know cancer's cheerleaders mean well, but what are they telling those who feel depressed, and those who despair - cheer up or you'll die?
Yes, there is hope. I have/have had advanced cancer, and was given the "its' all palliative from here" speech five years ago. I have melanoma, for which there was no treatment other than surgery back when I was diagnosed. I had the surgery, and after researching the so called "alternatives", got on with my life. I haven't taken any quack diets, supplements or complementary therapies, yet here I am, five years NED. It's a miracle!
No it isn't. I have had proven effective treatment, and I been lucky so far. Others I know had the same treatment at the same stage as me, and they are dead. The world is a chancy and an unfair place. We all want to believe that some lucky charm or magic beans will make us lucky. Nothing more human than superstition, but it doesn't work on cancer - surgery, chemo and radiotherapy work.
The great hope for MM patients is that during the time since I was diagnosed, new life-extending drugs have been developed by those evil drug companies I hear so much about on cancer forums. They were not found by chance from the "alternatives"- nothing ever has been, despite what you hear on the 'net. They were found via the human genome project. Have hope, but look in the right direction. If we are going to be cured, the answer will come from science and medicine, not from "alternative medicine"'s cynical exploiters of the desperate, or the woolly minded fools of "complementary therapy".
So called complementary and alternative medicine (sCAM) doesn't work. I mean not just that it doesn't cure cancer, but that it has no beneficial effect on cancer treatment. It doesn't help treatment to work, as those who like to blur the line between hard reality and pleasant fantasy claim. It has no effect whatever on cancer. Of course a bit of a footrub or some smellies might be nice - I like a massage and a go in the steam room myself. But that's not why I'm here writing this. It's because some people spent long years training and learning things that many others spent hard years discovering, and those people used their skills and knowledge to apparently cure me. You want hope? Hope in them.
Of course many of them didn't have time in all of this training to acquire people skills, and the level of people skills required to deal effectively on an emotional level with confused, frightened, despairing people all day every day is a very big ask.  I understand if people want a book or a person to put their faith in, someone to make sense of it all, a bit of harmless comfort, some way of feeling in control, even if it's just over what they eat.
If only these simple comforters would have the honesty to admit the truth, which is that all they offer is empty comfort. If only they wouldn't attempt to erode confidence in our real chance of survival, to blur the line, and claim more power than they really have. Many of them do have that honesty, and fair play to them. But those who offer false hope with lies and half-truths put people on the slippery slope that leads into the hands of "alternative medicine" - and consequently death. So have a care.

Labels: Alternative, complementary, quack

Another human trial drug combination looks very promising against MM. Back when I was diagnosed this never happened, now it feels like there's a new one every week...

A great summary of the state of play with new MM drugs can be seen here.

I think my latest email from psychiatrist-turned-amateur-oncologist Julian Lieb speaks for itself:

Claude Bernard noted that people whose “minds are bound and cramped” disdain opposing theories because they do not want to discover anything that might disprove their own. Bernard referred to them as “despisers of their fellows,” corrupting results that support their rivals, thus falsifying the facts.

It is the human and ethical right of every patient, physician and citizen, to receive medical information without any interference, second guessing, reevaluation, modification, editorializing, corruption, or delay. Your disparaging comments are immediately encountered upon Googling, thus corrupting my entire research output, and corrupting human and ethical rights on a gigantic scale. You have permanently damaged my reputation, and deprived an incalculable number of cancer sufferers, of their human and ethical rights, of which these are the most important. It is in your best interests to eradicate every detail of our relationship, and apologize to those whose human and ethical rights you corrupted. You did not have the right to corrupt my innovation, stigmatize me, and corrupt my human and ethical rights..

I advise you to terminate all of your internet activities, and never use it again to disseminate your opinions, positive or negative, about any health related issue. Many physicians are deeply concerned about rampant medical corruption on the internet, of which this is a prime example. 

He's banned me from the internet! Glad to hear I am so effective. If only.

Labels: antidepressant, Julian Lieb M.D, quack