A frequent mm acor poster mentioned to me the other day that she considered this site and listserv as "alternative." This got me to thinking about what benefit the site and list is to the members.
1) I don't and have never intended the site to be just "alternative." The sole purpose of beating-myeloma.org is to help people manage their mm through interactive health communication- whether this communication is alternative, conventional, complimentary, whatever.
2) The acor mm list covers conventional issues well. The MMA listserv is a mixture but mostly conventional issues.
3) The goal of beating-myeloma.org has always been to build on the benefits of both the acor mm and mma listservs by presenting more useful communication methods (links, audio, video, interactivity, patient studies, etc.)- do more and be more open-minded.
Please tell me what you all think- what you would like to see on this listserv.
Thank you.
David
Linda M - Houston I read the posts daily and find them very useful. I would like to see the site continue to "cover all bases", as it has been doing. The links to other sites are quite helpful. Keep up the good work!
Mainstream cancer treatment is all over the internet- the beauty of this place is we have dialogue I have never been able to participate in any other place- If we are no longer discussing alternatives- I have nothing to say-
Linda M-Houston- thanks for the feedback- I will continue to try to "cover all the bases." To me this means to continue to post information on 1)alternative 2)conventional 3) complementary-4) I will continue to also cut and paste posts on these topics from the mma and acor listservs.
Portlandrose-thanks for the feedback- while I have a bias in favor of "alternative" therapies, I think that it's useful for survivors and caregivers to learn about all views- many b-m.org members pursue an integrative approach- supplements along with conventional. The point is for all members to post and to learn. David
I don't understand how that woman sees this as an "alternative" site. It's much more of an
inclusive site, if you ask me. I've learned a lot about traditional treatments as well as nutritional and supplemental support and many who post here seem to be versed, or at least interested, in both. Perhaps she's focusing on the parts rather than the whole? To me, personally, opting for only one form of treatment is like trying to lose weight by either only exercising or only cutting calories. It won't work. You need the right combination of both to make it all work as well as for overall health. Just my 2 cents.
Susan- I think that this person has only read my posting on the acor lists and not really read anything on the b-m.org site. She is not a member of this listserv. Compared to many of the mm acor members I am pretty open-minded in my thinking. Many on that list are conservative and conventional only. Therefore some look at me as "alternative." Yes, members here seem to be interested in the spectrum of therapies out there. Over time, more and more mmers will see the benefit of this view.
I like to get to know the contributors through their writings. Sometimes people don't seem to sign their postings and it's difficult to know who is writing when only a special ID is used. For example, I don't know who Istrianka is. Also, when postings are addressed to a particular person it can be confusing. You may know who this person is and what they wrote that you are responding to, but the rest of us may not know.
Shirley SFL in NYC
Here's one thing that Beating Myeloma members can do to help "get to know one another." --- Members can write a mini-biography in their profile for other members to view. To edit your profile and add info like "favorite movies" or "how many children you have", etc... make sure you're logged in, click on the "my account" link in the main menu on the left side of the page, click the "edit" tab, then click the "more about you" sub-tab. Once you've updated your information on the "more about you" page, scroll to the bottom of the page and click "submit" to save the info. Others will now be able to see this new information whenever they click on your username throughout the site. Thanks, Robert
An idea for how members can help eachother "get to know one another" is for members to create their "signatures." --- Members can create a "signature" that will appear at the bottom of every topic or comment they submit. To create / change your signature, make sure you're logged in, click on the "my account" link in the main menu on the left side of the page, click the "edit" tab, then scroll down to "custom settings" where you'll find "signature". After you've entered the signature you desire, scroll to the bottom of the page and click "Submit" to save your settings. Once this is saved, your new signature will appear at the bottom of all of your new posts. Thanks, Robert
Hi Shirley -- I'm Susan. I often forget to sign things with my real name. Sorry to cause any confusion. Also, I don't post much. Though I read a lot, as I suspect many others do without ever posting. My last posting was in response to what David wrote at the top of this thread. Sometimes -- like right now -- I think the thread goes a bit off topic. That's all.
Cheers -- Susan
Susan- As you mentioned, I asked members what they are looking for from this listserv. Some things I have direct control over, like programming issues- formatting or patient studies (I don't control how fast these projects get completed unfortunately) and some things, like off topic postings I don't. I have chosen to let members talk about most anything so long as it's not about selling something, is constructive, etc. Much of my listserv experience comes from the acor listserv- Mike Katz is strict and the list is often intolerant of posts and thinking this is the wrong way to manage the list, I have become more tolerant. David
I used to post this on the acor list, which did have the advantage of proper spacing for paragraphs. Oh well. The visit was short as always, yet
packed with more information than you can get in an hour from other doctors.
This is both a function of Dr. Berenson's knowledge and my rapid questioning. Velcade and Quadramet will not move forward right now, simply because the company is out of money (this must be the company that makes Quadramet). Dr. Berenson have very good results with Velcade and Trisenos, but this will also not move forward. He said the baseline studies were wrong, and this skewed the results completely. I am not sure what he was talking about. He did write a paper on it,that he said I could have, but the front office help could not find it for me. Thalidomide gives generally long remissions. Revlimid can work unbelievably fast and can have very short remissions. His colleagues say this is because he uses it a a last resort. Revlimid is VERY toxic to the bone marrow, and he does not believe that it ever recuperates..meaning you will be stuck with a permanantly low hemoglobin. He does use is, but he said it is a "me too"drug, in other words, not that different from thalidomide. He also said this about all the new proteasome inhibitors coming out, but he was unaware of the second one being put in motion by Proteolix. PR-171, which they make, supposedly has no side effects.
He said, 5 years ago, Millennium said exactly the same thing about Velcade.
He was the first one to say it caused PN, and that company deneid it at the time. It may be the same with PR-171. He said ALL of the proteasome inhibitors are "me--too"drugs. He mentioned one that I was not aware of at all, but I cannot remember its name. He believes I will go into complete remission on Doxil, Velcade, and dex, and then suggests I can use either
prednisone or medrol as a maintenance drug. Actually, I will not do that at all, IF I achieve remission. I really have my doubts as to if that will happen, as he said the same thing about melphalan, Velcade, and vitamin C.
My results are on a downward trend. My B2-Mcg is 7.2..it was 14. something
3 weeks ago. He said nobody with any type of kidney problems would ever have
a low Beta-2 Mcg, myeloma or not. My creatinine was 1.4 which he said was high. Actually, it went right back down after this, and it has never been this high before. At any rate, I only go by the trend. He does not like the freelight test at all. At least for me, he neither an MRI or PET-Scan is necessary, despite what is often posted on the acor list. He said injection fractions to make sure my heart is okay..which one needs to do for Doxil..is an ok substitue for a MUGA-scan. He has had some patients on 1000 mg of biaxin a day while taking pulsed dex at 40 mg times 4. This seems really high to me, but he said they do ok. I have had pain in my ribs. I was worried it was a lesion. He said, if it was, there was nothing that could be done anyway, as this is not a spot that gets radiated. He said it is not uncommon for myeloma patients to crack a rib by serious coughing..which I had had until two days ago. He had one patient who had kidneys that did not function at all, and after a course of Velcade, Doxil and dex, his kidneys returned completely to normal. Also, I met a man while giving blood to Dr. Berenson's research institute who has had monthly Zometa for 7 years and nothing else. He had ONJ for a few months, which completely disappeared. I am not sure why many on the Acor list posted a new price of Zometa at $5,000 a pop, as Dr. Berenson said that is completely untrue and the price is the same as it has been. He said if I increased the dose of Doxil and Velcade, achieving a remission or a low protein count might be faster, but I might suffer from side effects. I am not sure what I will do that. He likes this treatment as the counts go down slowly, which for many drugs seems to mean
that remission or stable counts remain that way for awhile. He had on patient on Revlimid who then thought he was back in Germany. After he took him off of it, he was not sure what caused it. He put him back on Revlimid and exactly the same thing happened. Revlimid can have TERRIBLE mental side effects, which is why I refuse to have anything to do with it. he was pleased with my results, as my Urine protein has gone down to 1700 mg per 24 hours, when it was 4,500 in June. The normal range is up to 200 or so, but hopefull I am getting there, albeit slowly. I have to tell you I feel I am in very good hands with him as my mm specialist. I have not always followed everything he wanted me to do, but he had absolutely no problem with anything I have done. This is all I can remember for now, as my brain is extremely full!!
Alex Maas
a.maas@cox.net
Alex- proper spacing will be programmed in soon. David
Thank you, Susan, for clearing up the mystery. Of course, you were not the only one not signing, I just picked you at random. But it is nice to know that my post was read and you thought enough of it to reply. There are other confusions: I did not realize that my "User Name" would be posted as my name. I wouldn't want that to cause confusion, as I'm sure it must. David said he would try to clear that up, at least to find out how we could change the "User Name". But, wherever you are in this vast cyberspace world, pleased to meet you, Susan.
Shirley SFL
Shirley- Robert at Kosada and I have discussed this issue thoroughly. The basic issue is privacy. In Robert's mind, the member chooses what to put or not to put into his/her post. If you've noticed, the site doesn't even let us put someone else' email address in a post.
Since all members have signed-up using their email address, that is the only identifier used for a post from that member. If you choose to add your name, that is your choice. The only way to use a different identifier is to change your email or to change the privacy rules followed by Robert and Kosada Corp. I realize that this may sound extreme but believe me when I say that Robert is dedicated to privacy rights on the internet. David
David, I agree about going "off topic". It's the natural course of conversation. Thanks for being tolerant. For the benefit of the curious (myself included) may I suggest a "getting to know you" thread? We can list a short bio if we wanted to and that way reference it if we're wondering about who someone might be. I'd start but I'm off to work. Cheers -- Susan
Susan- Excellent idea! I will have the tech guys add a possible thread called "getting to know you" or "member profiles" (too anaseptic?) Since Robert is such a privacy fanatic, your profiles will be voluntary and probably just first names of course.Â
 David
Okay, I will go first! ;-) I wrote this brief bio for my blog some time ago, so I just had to update it a tad (my age, mainly!): I am a U.S. citizen, 46 years old, married to an Italian, and I live in Florence, Italy. My family moved to Florence when I was a child, and I went through the Italian public school system up to almost three years of university. I am completely bilingual. I finished college and grad school in the U.S. and Canada. Then, while doing research for my Ph.D. thesis in Florence, I met my future husband and best friend, and moved here the following year, as soon as I was awarded my graduate degree. In 1999, the year we got married, I was diagnosed with MGUS, which finally progressed to MM in late 2005. I started doing a lot of research online, and by chance came upon the curcumin-MM studies/clinical trial being conducted at the MD Anderson Cancer Research Center at the University of Texas. Most of this part is on my blog ( http://margaret.healthblo... ), so I won't repeat it here except to say that I have been taking eight grams of curcumin for more than a year now, and for the first time since 1999 my IgG count has stopped increasing with every blood test. I am SMM now, and stable. Indeed, my future trend is a downward one (so far!). More personal stuff: I am a cheerful, upbeat person with a quirky sense of humour. My positive outlook on life has helped me through some difficult times, like when I received the MM diagnosis in late 2005. Of course, my personal life also had a lot to do with that: my happy marriage, my four house cats, my loving and supportive family and friends. I am very lucky. I am also lucky to have a rather slow and non aggressive form of MM (shhhhttt!). I enjoy: a good laugh, living in Italy, visiting other countries, languages in general, etymology, playing cards with my girlfriends, cats, books, movies, classical music (Bach and Mozart in particular), but also Chilean folk music (Inti Illimani), some Italian music (883, Baglioni), Keith Jarrett, Jarabe de Palo and Billy Joel. All sorts of music, really, except for hard rock, rap and country. I am a chocoholic, too! That's about it, in a nutshell! I don't know if this is what you intended, Susan, hope so! Ok, folks, your turn!
Dear David,
I'm mystified by your reply, as I thought that my User Name would be a private identification (like sn ID Code or PIN number) and so I was surprised to see it as an identification name, placed on each post. I had no intention of it being a public identifier. It's not a REALLY big deal, but it served to confuse (I believe you said you yourself were confused.) So all I was really asking was for a simple way to un-confuse, or in other words, to clarify the writer's identity in the way most acceptable to the writer.
Shirley
Shirley- the other listservs list both the person who posts name and email address. Trying to maintain privacy as much as possible, Kosada designed the list only to include the poster's email address and lets the poster include her name or not.Â
To be honest, when Kosada and I designed the b-m.org listserv, we did not discuss this point and I assumed that the b-m.org list would include both the posters name and email address. Since I get the feeling that members want to know more about each other- becoming less private- I will tell Kosada to change the programming to include both the name and email address. My goal has always been to make the experience of managing one's mm as easy, fun, positive as possible. Reprogramming may take longer than I would like, but I will continue to enhance the member's experince as best I can. David
Shirley- We have been working on changes to the site and I know that you had reported this feature request and I wanted to get back to you about it since we had made some changes. On the forum / ListServ, each post displays the user name of the individual who posted the topic or the comment. It used to be that this person's name was just plain black text. Now, however, the username is a blue link. When you click on the blue link you're taken to the user's profile. Their profile contains information that they provided when they registered their account (the non-private information that doesn't breach our privacy policy). This info can include their relationship status, the url to their personal blog or website, their favorite movies or books, and more. This should help relieve the mystery or confusion of who's who when reading posts. Thanks, Robert
All I have to say now is that Margaret and I have a few things in common. Margaret I bet you did not know that I have the sheet music to Keith Jarrett's the Koln Concert and have even been practicing it recently!!! There are some interesting transcriptions of other Jarrett concerts by an someone who is Italian!! Oh, I forgot, I also have complete transcribed scores to a lot of Billy Joel's songs. You can add that to my email to you about Aromanian!!! That is all I will say now for my bio. Not that my privacy is paramount. ......................................... Where did my posting about my latest visit to Dr. Berenson go? I cannot find it. ...............................
Tomorrow Dr. Vescio, who used to work directly along with Dr. Berenson at Cedars-Sinai, will speak to my mm support group in San Diego. I would like to post this and know where it has gone!! I could not find it doing a search. What am I doing wrong? Oh well. Also, Dr. Berenson will be speaking Tuesday at yet another mm support group, but I am not sure if I will go to see him for that endeavor, as I will see him for an office visit again in a few months.
Alex Maas
a.maas@cox.net
San Diego
Okay now I see the post here. I never quite understand how this works. Oh well.
Alex in San Diego, not anywhere near Italy
a.maas@cox.net
I guess I misunderstood Susan's request, since nobody has yet posted any personal info. Sorry! And Alex, I think it's great that we enjoy some of the same music. How funny! I will definitely add that to the Aromanian info. ;-) What happened to your cough, btw?
Take care, everyone! Margaret in Florence, Italy
Kosada informs me that all user names (the posters name at the bottom of each post) is now "turned on-" if you place your cursor on the name in blue you will go to the persons page and can see some personal info- birth date, personal story-it helps to flesh out the person in my mind.
"For the benefit of the curious (myself included) may I suggest a "getting to know you" thread" Anyone can add more info if they want. David
Kindly tell me how to change my Username.   It has been confusing to people that my username is different from my signature.   I wish both to be ShirleySFL.   Also, sometimes I wish to post on a new topic . How do your suggest doing that.  Many thanks.
                                                       ShirleySFL                                   Â
Shirley-
When you're logged in, click "my account" in the menu on the left side of the webpage, you'll be taken to your user profile. In your user profile, click the tab titled "edit". There's a form field title "Username", change the contents to whatever you like. After you've entered your desired username, scroll to the bottom of the page and click "Submit". You username will now be changed everywhere to your new username.
Please also keep in mind that this will also be your new login username. So when you visit the site and you need to login, you'll need to use the new username with the same password you've always used.
I don't reccomend doing the above because if people start doing it often, it will confuse others even more. If we notice that it's being abused, we may disable the feature; but for now, we're hoping that people will only use this in a case similar to yours where you're trying to add further clarity.
Thanks, Robert
Dear Robert,   I've made the changes.  Thank you for being on the ball. I feel better.          Shirley
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