My Malignant Melanoma
Seanty's experiences with Metastatic Malignant Melanoma.
Part of www.mymalignantmelanoma.com.
Email us direct at firstname.lastname@example.org
Wednesday, 29 April 2009
Katie's Midnight Walk II
The site this blog appears on was started in response to the experiences of the parents of a 15-year old who died of MM just under a year ago, Katie Taylor.
Katie Taylor's mum started a fund-raising midnight walk in her memory last year. I'll be attending. Anyone else interested in helping can see how to do so here
Katie's story is here
I see in "Nature" that Avastin, presently being trialled against stage 4 melanoma has failed its stage 3 trials for early stage colon cancer. The drug manufacturers' shares have dropped 10% overnight. On the other hand, it's the same drug company which makes Tamiflu, so swings and roundabouts...
A review of what is most interesting to me in MM research follows, in case you thought they had forgotten about us.
The catchily named NVP-BBD130 and NVP-BEZ235 combination
show promise.Cyclophosphamide and virotherapy
work better than either aloneGenetic typing of MM
might aid in choosing an effective chemotherapy drugInterferon might promote rather than suppress MM spread
in some cases, but there is a test to see which way it is likely to goCarbon Ion Radiotherapy is better than conventional
for head and neck mucosal MMSagopilone might be an effective therapy
for brain mets.
What Now Update
I see the admins on Macmillan's are working harder than they ever have. The post recommending Gerson therapy
for example was firstly contradicted, and finally deleted in fairly short order. If they had half this effectiveness before they were forced to take on board the guidelines on promotion of quackery by my bringing the rubbish job they were doing to the attention of their supervisors, I'd still be on the board today.
Of course without those on the What Now board who are flagging the posts, the admins would be entitled to do nothing under the site's policy of reactive moderation. If you don't complain, they don't do anything. Thanks to all of you.
Contrary to what some on the site think, if the promotion of quackery on the site is effectively prevented, I'm quite happy. If the admins do what I would have done (albeit with a bit less style), job's a good un.
For those who have suggested that I just make up a new username and go back on the site, please note that this would give them an excuse to ban me as a clear breach of the rules. My IP address will make it clear to them that I'm a duplicate of a banned member. I do know technical ways round this, but how long will it take them to guess that it's me?
I'm presently appealing to their chief exec to try and get back on What Now on the basis that I have done nothing wrong, and should be able to come back on the same terms as anyone else. The appeal process takes about a month.
I have to be seen to be whiter-than-white, just as the admins have to make it look like the site does not need the input which I used to make.
Tuesday, 21 April 2009
today's bit of creeping nonsense on the What Now site-the return of the completely unfounded aluminium and cancer story, embellished with the usual "environmental toxins
What good does it do for anyone to make people scared of the 21st century, based on internet scare stories and hoax emails? There is research which suggests that the originators of such beliefs are actually mentally ill
. Those who repeat them are often opposed in some way to modern life, and have an axe to grind.
The post contains no grain of truth, but its most glaring errors are:
There is no evidence whatever that Antiperspirants
We have not "been told not to cook in aluminium pans
" by any reputable scientific body
We are not breathing lead in the air, lead in petrol was phased out in the year 2000
Chlorine and all other chemicals allowed in drinking in water cause no harm at the concentration they are present at. This has been extensively researched
Make-up and other beauty products available in the west have been rigorously tested
to make sure they do not cause skin or other diseases
The source of these scare stories is ultimately mentally ill people, vegans, and alternative medicine promoters (not mutually exclusive groups).
The post does not promote alternative medicine directly, but does cause unnecessary fear and alarm in a vulnerable population with a whole slew of groundless claims. Don't worry, it is rubbish from start to finish.
And then we have this
blatant nonsense. It has already been flagged, so even people as "encouraging of open debate" as the site admins should surely do something about it, though the claim that homoeopathy can shrink tumours is still up, so who knows?
"there is cure for all types of cancers and tumours by secretly guraded herbal medicines and the cost is peanuts as compared to expensive hopspital treatments with no cure and only maintenance.this medicine can cure all types of cancers and tumors even in the last stage. so if you are desparate to find cure take this herbal medicine.results starts from the first day".
Note however that the information content of this email is exactly the same as the more eloquent and guarded posts from the site's resident promoters of quackery:
1. "natural" medicines can cure cancer, but a conspiracy exists to suppress them
2. conventional treatments do not cure cancer, but natural treatments can
This poster's blatant appeal to the desperate and his personal illiteracy does not make him any more wrong than those spouting nonsense in a similar vein on the site, in posts which are still up despite my flagging them long ago.
He's just a bit more foreign, and probably a bit poorer. Surely no-one would choose to attempt to exploit desperate cancer patients if there were jobs available to them doing something less contemptible? You know, like strangling kittens or making child pornography.
The admins seemed to wear themselves out quite quickly yesterday, and spam and misinformation have once again built up on the site. Annemarie has been helping them out with some flags, and I see Jools has responded to cranberry guy's missed post, but their responses are so weak as to be totally ineffective.
Would anyone reading the cranberry thread know that the original post was without any scientific basis? It's all very well the admins posting to say that promotion of alternative medicine is not allowed, but isn't that just saying that the site's policy is against it, rather than that it is unfounded nonsense, which is the truth of the matter(see yesterdays blog for explanation) ?
Would anyone reading this thread
know that the (no doubt well-meaning) advice given to take vitamin C during chemotherapy is dangerous, as vitamin C can block the action of some chemotherapy agents? My wife has had to to flag it and then when the admin refused to do anything, point them at a paper showing it was dangerous advice to even get this wishy-washy pointer put up.
I see also that someone has chosen to attempt to rubbish me personally
in an attempt to promote alternative medicine on the site. He even claims that homoeopathy shrinks tumours, a blatant transgression of the site rules. My wife flagged the post yesterday, but there is as yet no sign of any action from the admins. In fact the admins have yet to acknowledge any of her PMs or flags.
The poster makes many of the same false points which all promoters of homoeopathy do, so let's have a look at these:
1. They claim that homoeopathy works on animals, and this proves that it is not a placebo, as animals can have no expectations.
This effect has not been shown in any scientific study
, but only exists in the minds of addled animal lovers and promoters of homoeopathy. What grounds do we have for thinking that the homoeopathic remedy worked? The owners and the homoeopath think that it did. The placebo effect is working on them, and possibly at one remove on social animals like dogs who love to please. Of course, most illnesses are self-limiting, and when an animal gets well, people who believe in homoeopathy think that their magic water has done the work.
2. Homoeopathy is available on the NHS, therefore it works.
This does not follow. The NHS offers all sorts of things to people on the grounds that they like it, or in the case of homoeopathy, that influential people like Prince Charles champion it. For people with low-grade, chronic conditions, giving a placebo to keep people quiet might be useful. However, homoeopathy does not work other than as a placebo. Every scientific study shows it. Homeopathy is bunk
3. "We have to define what science is", and other pseudo-intellectual nonsense.
The standard of proof in science and medicine is well known to those involved in the field. The claims that science is just another form of knowledge no better than guessing, feelings or wishful thinking always come from those who, having lost the game, wish to change the rules. Homoeopathy has been studied in detail. It has no effect above placebo
4. "Such and such a diet/treatment has won acclaim from many people"
This is the "eat shit, 10,000 flies can't be wrong" argument. The test of whether a medical treatment works is not how many people believe in it, but whether it does work when subjected to rigorous testing. Homoeopathy fails the test. Every time
Monday, 20 April 2009
Wow, I've noticed an astonishing increase in efficiency in the time taken to remove spam and promoters of quackery on the What Now site this morning, though spam has laid on the site all weekend as the admins seemed to need a bit of a rest.
I personally saw no sign of them all weekend. Site traffic seems to have dropped radically, looks like those people weren't making empty threats about leaving. The moderators have upset more people than I ever did, but who is going to ban them?
Cranberry guy and his friend the supposed nurse's initial posts lasted less than two hours, despite no sign of a flag on the post. The admins have gone from a minimum of three days from flagging to deletion to deleting stuff before it is even flagged. If only they had had anything like this efficiency previously, I'd never have been banned. Of course, as of writing they have missed one of his posts, as well as a few other things which have sneaked in recently.
Might this be something to do with my complaint landing on the Chief Exec's desk this morning?
Oh, and on the cranberry issue
, the posting contains the following misinformation:
1. The effect was only shown in the test tube
2. It wasn't to do with taking both drug and juice at once
3. It made no claims for blueberry juice
4. It made no claims for taxol, only platinum based drugs
5. The authors of the study have published nothing new on the subject since their original paper, a likely sign that as with so many test tube effects, the effect was not apparent in animals.
6. At the time of the original study, the authors cautioned patients as follows: "The study is experimental and ...patients with ovarian cancer should always consult with their physicians before trying any type of anti-cancer therapy"
Of course if I was on the WN site, this information would be below the post, instead of here, but I do what I can...
My wife is keeping an eye on things, but she won't be posting corrections, don't want her getting banned too...
Saturday, 18 April 2009
There are a couple of new stories
on the site from Marsha and Tuckerz from the What Now site.
If there are any MM patients reading who would be willing to let me publish their stories, please contact me on the site email: email@example.com
Friday, 17 April 2009
For any of the What Now people who are going to attend this afternoon's chat whitewashing session, here are a few questions I think the moderators might have difficulty answering. I don't expect you to stand in for me, or particularly expect the moderators to give you a straight answer, but if you think it would be fun to ask, try these:
1. If Sean was really breaching the new conditions imposed on him by the moderators on 3rd April, why is it that every single one of the seven emails he received from the moderators after that date was to thank him for flagging content which breached the site rules?
2. If Sean has really been banned on the grounds you claim, why is it that he was told of his exclusion by George Briggs, as a result of his complaint against Mr Briggs? Why is it that Mr. Briggs told Sean that he would be requesting you to exclude him, if it was your decision as you now imply?
3. How do you feel Sean's complaint about your poor standard of moderation, and your bosses covering up for you has been handled? Do you feel it meets the principles of your charity's complaints policy?
"complaints are dealt with consistently throughout Macmillan...complaints are listened to and investigated thoroughly...complaints are acknowledged speedily and recorded...complaints are dealt with in an appropriate, fair and timely manner... we learn from the complaint"
4. Isn't it true that you are overreacting to the complaints of a vocal minority, but have ultimately only banned Sean at the request of your boss? Isn't it true that this is an attempt to discredit his complaint against your team's poor performance, and to close ranks in the face of a complaint?
5. Who is going to prevent the promotion of alternative medicine on the site in Sean's absence? Isn't it true that you do a very poor job on this? Isn't it true that you initially refused to implement the new rules on alternative medicine, and when Sean complained, told him that you would change the rules to suit your liking? Isn't it true that you could not in fact change the rules, and have consequently been very lax in applying them, because you do not personally support them?
6. Why did you require Sean to follow far stricter rules than anyone else on the site? Why did you allow people to freely personally abuse him?
7. If you can't answer these questions, what is the point of this chat session?
Thursday, 16 April 2009
I have been banned from the Macmillan What Now site as a result of complaining about the poor standard of moderation. Spam has proliferated, technical difficulties abound, and promoters of quackery have been protected from the necessary robust criticism
I will write more on this later. In the meantime, I will be writing my usual Wednesday blogs on here. Anyone on What Now who wants them to appear on there only has to link to them. I'll be able to write exactly what I want on here, without having to try and accommodate the What Now moderators constantly proliferating new rules, applying only to me.
Of course I won't be there to flag the quacks and their dupes to the admins. You'll have to do that for yourselves, unless I manage to get reinstated, which presently seems a little unlikely, as the admins are making up stories to justify banning me. It'll be a bit embarrassing to have me back now.
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