The acor list owner told me I am no longer allowed to post Dr. Berenson's name, as my frequent posts made it seem too much like a chatline for Dr. Berenson. 

Unfortunately, apparently he now is censoring all of my posts. I posted a link to a trial at the University of Michigan in response to someone else's posting.  That was also censored so I asked someone else to post the link.

Also, unfortunately, the listowner has come to think of himself as an mm specialist, which he is certainly not.

He censored a repeat posting of mine about what Dr. Berenson said in April about SCTs.  Dr. Berenson said that for 3 percent of mm patients derive genuine benefit from a SCT, 3 percent actujally get worse (the dirty little secret) and for the rest it is a wash (meaning it makes not difference in terms of overall survival.  The acor listowner said he could not allow this posting because it would frighten too many mm patients who read the acor  list, even though I had posted these same words before a year ago.

He also questioned the statement without a true understanding.  He went on to say that many more than 3 percent get a remission from a SCT.  But he did not understand the words. More than 3 percent get remissions from a SCT, but they vary on length, and a SCT is tremendoulsy hard on the body.  That is why Dr. Berenson now has given them up, now that we have more drugs available.  The patient may get a remission of several years, but in terms of overall survival it makes no difference. The acor listowner just could not understand this.  

The acor listowner also said Dr. Berenson stance on SCTs for mm patients  is not balanced.  I think there are more than enough posts on the acot list  about Dr. Barlogie and his supposed mm cure to provide a balance.   I objected to the post about Dr. Barlogie's cure, but I was the one he took to task.  I only said if Dr. Barlogie truly had a cure, certainly Dr. Berenson would adopt it. Dr. Barlogie does not have a cure at all.

Then the acor listowner insisted I had confused dex with Medrol.  I had done no such thing.  I had posted that Dr. Berenson had told me that infusible dex is much more easily tolerated than oral dex.  The listowner insisted I did not know what I was talking about, but he did.  He went on to say that it was a question of dose and not delivery.  In fact, the acor listowner is not an experienced mm specialist who gives drugs to patients, but he does not realize  this type of experience is something he can never have.  I asked Dr. Berenson why it is that IV dex is more easily tolerated than oral dex, and he told me he actually had no explanation, but for most patients it is like an infusion of water. This is what an experienced mm specialist can give you.

 I wrote five emails explaining to the acor listowner that I am currently on oral Medrol and dex and was previously on dex, Velcade, and Doxil, all infused, but he just could not undertand, no matter how I phrased it.  My first post only said when I was on Doxil, dex, and Velcade, the dex was given as an infusion because Dr. Berenson said it is more easily tolerated that way.  My signature said I am currently on Medrol and Revlimid.  The listowner could not understand this and asked..which is it that you are one ?  Are you on Medrol or dex.  Very frustrating that he could not understand the difference between past and present, no matter how many times I tried to explain it to him.

He also told me that he let it slide that I had posted a link to Dr. Berenson's site, as if he had done me a giant favor.   I had done no such thing.  I had posted a link to the MMA site.  Dr. Berenson writes very abbreviated posts to questions that people ask on that site.  It is not his site at all. He does have a site and a research foundation.  I never posted anything about it.

 I really do not understand this very well.  The acor listowner works for the IMF, so any post about the IMF is allowed.  The IMF is, at least, in part funded by Celgene.  So why is this allowed then?  Many find Celgene's pricing policy on thalidomide unconscionable.

There is a tremendous amount of friction between the acor listowner with Dr. Durie and Dr. Berenson over the ONJ/Zometa issue.  I am not a doctor.  All I can say, in that both Dr. Berenson's experience and that of Dr. Richardson of  Dana Farber, Zometa is anti-mm so they continue to give it monthly.  One acor list member who actually suffered from ONJ asked them personally why they were making such a big deal about ONJ since monthly Zometa had done him an extreme amount of good.  These people got extremely agitated with this question.

 I do not question the link between ONJ and Zometa. I also do not question that Zometa is anti-mm.  My teeth are in very good shape.  I will continue to take my monthly Zometa. I have had no bone problems, and I know I am lucky.

 Also, some of the posts by the acor listowner are laughable.  He once was trying to give himself credit for being part of a team that produced a report that Revlimid was just as effective with reduced dex dosages as with higher dosages.  He went on to say that because of this report eventually other therapies will also be given with reduced dex dosages.  This was a recent report. Actually, Dr. Berenson has been lecturing about giving reduced dex dosages for over 10 years. This is nothing new, except in the mind of the acor listowner. 

As I had posted, Dr. Berenson was astounded in the original Revlimid study that so much dex was given with so few side effects.  he called the Mayo clinic and what was reported was not reality.  I am fortunate as I have never been on 40 mg of dex 4 days on 4 days off with any treatment, but some oncologists still give this, unfortunately.  

Since all of my posts are now censored on the acor list, I will start to post here instead.

I really appreciate the information that I get from the acor list, but the censorship of my posts is really very questionable.  The IMF also does a lot of good, but its stand on ONJ should not interefere with the dissemination of information on the acor list.  I find this very wrong.  

And I find it wrong that  a person who  manages the acor list  who now sees his knowledge of mm as equivalant to that of an mm specialist.  It is not.  I think that if there is a conflicting opinion from another mm specialist, that should be posted, instead of censoring one particular specialist's viewpoints.

Alex Maas

San Diego

No SCT