My Malignant Melanoma

Seanty's experiences with Metastatic Malignant Melanoma. Part of www.mymalignantmelanoma.com. Email us direct at help@mymalignantmelanoma.com

Saturday 26 March 2011

 

Dr. Julian Lieb flips out again

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.

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Friday 25 March 2011

 

Ipilimumab gets FDA approval

...and becomes known as Yervoy...

Wednesday 23 March 2011

 

Rigvir- she couldn't let it lie

Inga the Rigvir publicist has been kind enough to write again:

Well, this obviously is a one-man-show. Seanty – the utmost expert in all cancer medicines, and a professional guide to Latvia's medical system. :) The one and only voice of truth from the depths of civilization.

You place a link to a U.S. Clinical Trials website. Why?! What does this link have to do with a medicine which is registered in Latvia?! You won't find RIGVIR in the U.S., Turkey's, Ukraine's, or any other country's clinical trials' sites, and you don't have to spend your precious time trying to prove it. RIGVIR went through all clinical trials in L A T V I A.

By the way, what is this disdain towards my country? Sounds like you're having some personal issues which have nothing to do with objective evaluation of RIGVIR. What next? You will try to force that everyone should eat at McDonald's just because it's the American way?

I will not involve in this again so enjoy your incompetent babbling about civilization, highly infectious viruses, medical systems, clinical trials, untested virotherapy(?!) and so on and so forth.
She also put three links to her employer's quack promotion sites at the end, presumably in the hope that I would be stupid enough to post them up. Duh.

But she has questions: so let's answer them: Why did I post a link to the US clinical trials site, showing no mention of Rigvir? Because if you want to sell a medical treatment worldwide, you register your trial there-but it's not just that Rigvir hasn't been tested to international standards. I can see no evidence that Rigvir has ever been subjected to any clinical trials at all, in Latvia or elsewhere. The dross they list on their publicity site is not reports of clinical trials against melanoma or anything else, or even papers in peer-reviewed scientific journals. It constitutes far more trivial claims, which were never checked by third parties, made twenty years ago.

So, it is untested. It is a virotherapy. It is an untested virotherapy. Fact.

Rigvir is an ECHO virus,  so the claim that it is of  a type which is both highly infectious and responsible for many cases of childhood meningitis is factual.

Why the disdain toward Latvia? Well, joking aside, it's quite a focussed disdain. If Inga and her employers are not in prison, Latvia's medical standards need tightening up.

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Monday 21 March 2011

 

Story updates

There are updates to Sarah's and Glen's stories of living with Stage 4 MM.

I mention staging because if you put "Stage 4 melanoma" into Google back when I was diagnosed, you were swamped by pages of paid ads and testimonials for quack "cures". Now the first ten pages are lists of clinically proven treatments. If you want a sign of how things have moved on, there it is.

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Thursday 17 March 2011

 

Ipi set for FDA approval

Ipilimumab is strongly rumoured to be on the brink of FDA approval on the back of its successful clinical trials.

Sunday 13 March 2011

 

Rigvir again

In Latvia, you can buy lab-modified highly infectious childhood meningitis viruses over the counter in the chemist (and for all I know, the newsagent) with unsubstantiated claims of effectiveness against melanoma. This product, untested for safety or effectiveness, is called Rigvir. "Inga" writes (probably from the office of Rigvir's publicists):

"Sorry if I'm wrong, Seanty, but you are trying so hard to “destroy” Rigvir that it makes me think you have been paid by someone to do so. I wonder who might that have been. Oncovex?"

Be sorry then, Inga, because you are wrong on all counts.

"Nevertheless, it's great you post your opinion, but why do you slender the facts? Let's see - Rigvir has been registered in a member state of the EU, that's a fact. This fact proves that Rigvir has gone through ALL 3 PHASES of clinical trials. Cancer patients should be allowed to decide for themselves on the efficiency of some medicine, but they should not be given wrong information, agree?"

First let's remove the wrong information from your own communication, Inga - Rigvir has not been subjected to a phase 1 clinical trial, let alone passed all three. Latvia's medical system is (to put it politely) not quite as formal as those in the more developed EU countries. That you can buy an untested virotherapy over the counter in pharmacies tells you everything you need to know about medical regulatory standards in Latvia. If it passes clinical trials, Oncovex is not going to be found next to the tampons in Superdrug.

Then there is the question you raise of whether of cancer patients should judge for themselves on the efficiency of cancer medicines. Though I understand you have your own ways on Latvia, over here in civilisation we have doctors for that. It's quite tricky you see, even if you aren't making the decision under threat of death.

A quick look around the internet shows the results of letting frightened unqualified people choose their own treatment for life-threatening illnesses. They get ripped off by bloodsucking scum like your employer, then they die. Other than that it's a great idea, obviously.

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Sentinel Node Biopsy

A negative SNB is associated with a very low risk of recurrence in the lymph nodes according to a big new meta analysis.

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Friday 4 March 2011

 

Melanoma Education Symposium

I've been asked to publicise the Melanoma Education Symposium taking place in Santa Monica on 26th March. I'd go but it's a bit out of my way...

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