22 replies to this topic

[pammartin]

Ok, first I have to wipe the egg off my face, after posting more than a few times I have not received contact concerning the changes to the boards, today I received my call.

 

Thank you LLS for contacting me and for listening to my concerns and complaints.  I appreciate the time and attention that was given to me.

 

After I noted my concerns, several of them were discussed with potential solutions that I agree would work if spend time learning how to navigate the new boards.

 

The most important piece of information that came out of our conversation has left me concerned.  New people who find the LLS site will often be directed to the new boards.  This is inevitable and something that will happen.  Along with us wanting to keep these boards, who is going to be on the new boards to support, comfort, and give advice if we are here.  That is not a question, it is a concern.

 

When I found the LLS boards back in October of 2011 I thought I was going to die and life was over.  I knew nothing, my oncologist was not great at explaining, and the specialists had me headed for a transplant.  A few days after joining, I was armed with information, knew a tiny bit about CML, and felt confident enough to challenge my oncologist's choices and try the TKI for a longer period even though it was not initially effective.

 

Because of these boards and the wonderful people that lifted me up in more ways than I could ever express or say thank you; I soon changed oncologists, responded to the TKI and have been undetectable since.  You people will always be my hero's because I had responses within minutes of my first post and they continued throughout my journey.  Along with the support, came many jokes, much needed laughter, and I have made a few friends that I would never have met otherwise.

 

Although we do not like change, I now believe we should support the new boards, for the people who arrive just as I did, scared, anxious, and thinking I had no choices.  I am not saying I like the change, but I wish everyone the same opportunities as I had when I first found this site.

 

Pam

[hannibellemo]

Pam,

 

Could you share with us what the solutions were to your concerns? I understand what you are saying, but I feel this new format is even worse than other social media templates because we aren't truly able to "reply" to individual comments. To make it even more difficult, comments just continue to move down the page and are difficult, if not impossible, to track.

 

Frankly, if I were a new here, after a short period on that site I would quickly determine that was "nothing for me here" and move on. 

 

This has nothing to do with not liking change, I just didn't find anything useful there. Like the daily question? WTF? How is that supposed to be helpful, even if one of them interests me there is no way to go on to discuss it in depth.

 

So if you have helpful information on the site, please share it, because I'm at a loss.

[pammartin]

I have been thinking about my conversation most of the night.  My main concerns (and they were for myself and thinking of others) were;

 

1. I do not want to have to join every board to follow a few people from different areas.  In the new forum one has to join to see the posts.

 

2. I am not as concerned with newbies navigating the changes only because they have not previously posted on these boards. I am concerned with the many people who are comfortable and will struggle with the changes. 

 

3. I do not appreciate the ad-like posts within the threads.  These may be informational from LLS people but for me they tend to jumble up the flow of the information.

 

4. I especially do not like the idea there are no headings for posts.  I believe it is going to be difficult to find information without going through masses of posts, threads, or whatever they are being called.

 

5. I was very disappointed the 'Let's Just Talk' area did not cross over.  I believe it is a great place to virtually hang out for different subjects.

 

6. My last and perhaps to me, the highest on my list was the idea if both boards are kept open, how are the new people who join the new board going to receive help and support while this board is maintained. 

 

The majority of my questions were answered thoroughly and quite a bit of time was spent explaining the changes and why they are occurring. 

 

1. I was encouraged to join all the boards, then read through the information to find posts I am looking for.  I simply said I felt it would take quite a bit of time and I did not want to join all the boards. To me, that means I am connected in some way to the disease addressed.  It was suggested I utilize the Private Message feature if wanting to stay in contact with particular individuals.  This is a solution but support for a person(s) will not flow in a thread and jumping back and forth from a post to a PM seems very chaotic.  I believe the 'friend' option is active so again that would put me in touch with others.

 

2. Although technological advances are a fact of life, I know several people who had difficulties with the current boards when they changed.  I was told if members contact support now, there are enough people to work one on one with those who believe they will have difficulty with the changes.  It was stated this option will not be as readily available once the new boards fill up with people, so if you believe you want or need help, ask for it now and not later. 

 

3. The ad type posts are to be informational, they will not be removed but as people begin posting it is the belief of LLS that they will not be so obvious as the forum develops.

 

4. The heading is something they are working on but I do not believe it is going to be an option in the near future.

 

5. The 'Let's Just Talk' area will be added because enough people expressed their displeasure at the loss of the forum.

 

6. As the new board develops, this board will become obsolete. The idea is to encourage people to move to the new format because this one will eventually be unavailable.  Currently, a date is not set for one to end and the new one take over but it is going to happen.  LLS is hoping we will all move to the new area to continue to help others, offer support, and provide our own stories to help others as we do now. 

 

LLS is listening and attempting to satisfy current needs along with updating the technology to fit updates and advances.  I decided I have to give the new board a try, only because I was met with support I could never express enough thanks to all who talked me through those horrid months of the unknown. 

 

I am fairly sure I did not give answers that are wanted, but after thinking about this for over 24 hours, I decided to address each concern and the response as accurately as I can.  Please note I am repeating a conversation that occurred yesterday, and it is my interpretation.  I believe that is important. 

 

Pam

[hannibellemo]

Pam,

 

Thank you for your thoughtful response. Most of those were my concerns but I did not realize that this board would indeed be going away in the future. I wish Jerry were still alive and the old "A new CML Drug" site was still active. That was my second favorite site and interestingly was populated by a whole different set of very knowledgeable people. Someone tried to keep it going after his death but I think the passion was gone.

 

It appears that I should be using both LLS sites now. It doesn't seem that many are, however, because a post I did weeks ago is still fairly near the top. I've joined AML and Transplant because of Tex and others and because a couple of our group have headed that way.

 

We have a fairly straight forward dx with few treatments, I don't know how the other leukemias and lymphomas will find what they need on this board. I know the AML board frequently have discussions that go on for pages and pages and span many months.

 

Again, Pam, thank you for your very thoughtful and lengthy answer to my post.

 

Will you be my Valentine?  

[mscl]

I just registered on the other site to not be so negative before at least trying it. I don't mind change, but after only a few minutes, I'm struggling. I'm I correct to observe you just follow the "feed"? You can focus in on topics? I'm on Sprycel, I tend to gravitate toward those topics. My Onc wanted me to change to Tasigna because of pleural effusion but I had concerns about side effects, so we are trying s reduced dose of Sprycel first, so again, I gravitate toward those topics to follow. Am I missing something in the flow of information on that new format.

[Trey]

If the new site is to be useful it needs to address issues we care about.  Maybe some day it will, but for now it is devoid of content.  I think the LLS just needs to figure out what the new site is supposed to do.  But at the moment it is simply not useful.  That is not our fault.  Some at LLS are upset with us, but a cardinal rule of meeting customer needs is to care about what the customer wants instead of pushing what the supplier wants.  Breaking these rules leads to failure.  That is where we are right now.  Can it be reversed?  Maybe.  Maybe not.  I and others have provided our inputs.  It is now up to them.

[pammartin]

Pat, I would love to be your Valentine.

 

mscl, I have the same concerns you stated, I have visited a few times.  I am going to make a conscious effort to spend time there to see if I continue to dislike the confusing set up or it becomes familiar with a bit of use.

 

Trey, as always your thoughts are spot on.  But you can achieve that in a few inches of space, I need a foot or so.

 

The proverbial ball is in the LLS court. 

[Antilogical]

I don't have the patience to read the streaming-style postings in the new LLS site.  It's combined the most inconvenient aspects of Facebook & Twitter.

 

The LLS claims that it will help promote research and education, but I suspect that one of the key drivers to the new format is that it's easier for the admins to maintain.

[Buzzm1]

LLS asked what we would like in the way of forum improvements and we gave them an honest answer.  That being primarily an advanced search feature, which would aid newcomers as well as provide us the means to develop an index which would serve as a means to help reduce the number of redundant threads, a common problem and an administration headache on most discussion forums.

 

LLS completely ignored our answer, having already decided on the new format before they even asked us the question.

 

The new format doesn't serve our purpose.  If LLS wants to continue to press the issue, they deserve what they get.   

[hannibellemo]

I've been following the new boards and I don't see much activity. There was a post in Living with CLL with 2 responses, but most every other site I've joined only has posts from LLS.

[hannibellemo]

I just posted a link to the old discussion board site for someone who had just been dxed and was requesting info on AML. It will be interesting to see if it is allowed to remain.

 

Some of my posts have been deleted, I guess I was encouraging dissention! What can I say I was a child of the 60s. 

[pammartin]

Did you receive notice they were removed?  Or they just disappeared?  I have read many posts that state concerns over the changes and have not noticed them disappearing. 

 

I am all for the removal of posts that are inappropriate or unacceptable.  Stating concerns or sharing thoughts about changes that affect everyone does not fall under that category.  Of course that is my opinion. 

 

Interesting. 

[kat73]

I live in computer world ignorance and so have not checked out the new . . . thingie.  I have been relying on what others more savvy than I report.  I am really sad that this discussion board is going to go, eventually - I thought it had been saved.  I don't know what I'll do, since I am so NOT a Facebook/Twitter person.  It feels and sounds to me - my instinct really - that LLS is trying to wrest control over the flow of information from us, back to them.  Here's a bit of conspiracy paranoia I'll throw out for consideration:  maybe oncs across the nation (world?) discussed behind the scenes at ASH - "Hey, what's the deal with all these uppity patients wanting to quit TKIs?  Where is all this coming from? I'm having a devil of a time getting my patients to be compliant!"  Well, some of us must have blabbed when our oncs asked us where we were getting all this info, and they called up LLS and said, "Put the kibosh on that discussion forum!"  Or here's another theory:  LLS loses its standing in the world if it isn't the be-all and end-all source of official info, and if it loses its standing, then its relevance and its funds.  At any rate, at the risk of uttering the Worst Pun of the Century, there's certainly some bad blood between us, eh?

[mscl]

Bad blood pun..... Bahahaha!

[Buzzm1]

Patient groups funded by drugmakers are largely mum on high drug prices http://usat.ly/1RBGnek 

 

In Canada (per pill)

Teva Imatinib Generic $17.74 USD/400mg ... Brand name Imatinib $126.51 USD/400mg  

Teva Imatinib Generic $5.03 USD/100mg ... Brand name Imatinib $36.50 USD/100mg

https://www.canadadr...s/gleevec/100mg

 

In the U.S. (per pill)

Sun Imatinib Generic $xxx.xx USD/400mg ... Brand name Imatinib $361.16 USD/400mg per Kaiser 02/16/2016

Sun Imatinib Generic $xxx.xx USD/100mg ... Brand name Imatinib $100.27 USD/100mg per Kaiser 02/16/2016

[pammartin]

Bad Blood is the best thing I have read all day.  I am not sure if that is good or bad.

 

I adore conspiracy theories.  Please, please, continue.

[Buzzm1]

I adore conspiracy theories.  

79% of conspiracy theorists believe that foul play was involved in Scalia's death ... 

[pammartin]

79% of conspiracy theorists believe that foul play was involved in Scalia's death ... 

You have to admit, it brings up a multitude of interesting possibilities.

[hannibellemo]

Sorry, it was CLL and, yep, my comment and link to the old discussion boards is gone.  To answer your question, Pam, my comments have just disappeared I was never contacted. The worst thing I suggested was a "red flu" (there's a blood pun again) when this site closed and the new site opened. 

 

I don't believe that type of censorship in public forums should be allowed except in certain cases, but "them who pays the bills, makes the rules." Our only decision is if we're going to stay or leave. I will stay on this site as long as it exists, but I doubt I will transition to the new. I will look for a different forum.

 

I really don't understand why one has to go. Community and the Discussion Boards are two totally different tools that accomplish different things. One is basically for support and one is for information (albeit "party line" information) dissemination and information gathering.

 

On the Judge Scalia conspiracy discussion; heart attacks are fairly simple to mimic, just sayin'. 

[hannibellemo]

I found my post; it was not deleted. However, I found it by accident after looking at something else. My proof that the Community site is not useful in tracking posts. I also noticed on the same thread, there were lots of posts that did not follow the original thread. Everyone was just kind of talking over each other (not literally of course), if you get my meaning.