15 replies to this topic

[hannibellemo]

for support and information. I hope LLS is able to get a handle on these spammers. They shut Jerry Mayfield's site down for weeks, because they took over the newcmldrug site. He had to develop a whole new site, bless him, and it's just now starting to recover.

Pat

[pammartin]

Thanks for the info, although it is annoying it is also frustrating, we cannot communicate with the new people trying to find CML support and other LLS members.  This is one of the reasons why I was tossing such a fuss a while back, it was becoming a disaster, and there are real people who need the support we can provide, just as it was given to us. 

[pammartin]

Hi Billie,

The spammers are the ones that post all of those long stories filled with oakley sun glasses for sale, diets we should try, free access to television programs that are usually pay per view and other posts of this nature, you might see similar posts from the same person in a row and posted in a short amount of time. 

If I am understanding you correctly about the contradictions, I have a feeling there is not a lot they can do about that, if someone joins, logs in with a story and posts, we have no idea what is truth and what might be fabrication.  Usually after a while the continued stories of constant despair reveal themselves because people make mistakes and tend to forget details they post.  One idea I am hoping that can be addressed is when one person potentially posts under several different identities with different background stories, each one more depressing than the last.  IP addresses (like an address for your computer) are logged, hopefully some solution could be found to reduce this from happening.  These stories frighten the new and old members alike and are heart=wrenching, but become annoying if possible discovery of fraud occurs.  The one thing we all have to remember is this board is an open forum and anyone can post here.  We would like to think people respect the LLS board and members, unfortunately that is not always the case. 

Pam

[Susan61]

Hi Pam:   I agree with what you are saying.  You want to be available and extend your help to those who need it, but we have to be careful as to who we reach out to and how far.  We can give our advice, and just feel out the ones that we do not think are for real.  Its a real shame to have to do this, but I think its terrible for anyone to pretend they have CML or any cancer just to get some attention.

      I do remember when Jerry Mayfield had to get shut down.  I think its a shame.  Lets all just be a little more aware of what is being posted etc.  If something does not sound real, then ignore it with no response is what I intend to do.

[Judy2]

Hi Pam and Susan,

Well said.

Judy

[CMLSurvivor]

I wonder if it has more to do with the fact that our blog site is very active and they are having a hard time monitoring it. In any case, it is quite sad that the newbies who probably need the most comfort cannot have their questions answered. I think they can still view and search the current blogs and find something to help answer some of the more common questions they have. I think between us old CMLers, we have experienced almost everything and blogged about it here.

[pammartin]

Thanks for posting, I was thinking about that this morning, I read for a week or so before I joined, so although newbies cannot log in to ask questions at least they can use the search engine and find loads of information.  Hopefully they will be reading posts like this one and know we are here waiting when the opportunity to join is reinstated.

[Susan61]

Hi Pam:  It is a shame that the newbies can only read and not post.  I did not even know this happened, but a few weeks ago I noticed tons of newcomers posting.  We never had that many at one time, and I could not keep up with it.

I think I even mentioned it somewhere along the way.  This will be good and helpful to everyone concerned, because the way it has been set up we never knew who was legitimate or not or who we were talking to.

[pammartin]

Hi Susan,

I am behind in reading posts, how are you doing?  What is going on with you?  I keep thinking about that story you wrote that brought back the memories of my mom's home made bread, I swear one of these days I am going try (and probably fail) to at least recreate that wonderful smell!

Pam

[Susan61]

Hi Pam:  Thanks for asking.  I do not put much on here with regard to my other problems.  Right now I am suffering with nausea constantly.  I get relief for a day or just hours, and its back.  I am so sick of doctoring and trying to find an answer for various health issues.  I have no pain, just this nagging nausea.  I was thinking maybe its early Gallbladder disease, or maybe I just need some Acidophilus in my diet.  Its just so weird.  IT came on suddenly over a week ago.

The other thing is that I could be real sick, and then if I eat something the nausea goes away.  I force myself to eat something due to my Diabetes.  I am just a real mess LOL

     I have just been jumping on here and there to post if its something I can contribute to.

    I should see if my mother has the recipe for that great bread that my grandmother used to bake.  I know what your saying.  The smell of that bread was out of this world.  I would probably mess it up if I tryed to make it.

Hope your doing well also.

Susan

[pammartin]

Hi again Susan,

I read you post and although I am not sure what testing you have had; twice in my life I have had the same symptoms as you described.  Both times I had a stomach ulcer.  If the ulcer has only stomach acid to irritate it, you can become really ill, but when you have food covering the ulcer it actually feels a bit better.  Both times my symptoms appeared pretty quickly, like you said yours did.  Not sure if that is what you are dealing with but you really should see your doc about it.  I understand the sick of doctoring concept, but maybe you are going to have to get checked out.  I have my mom's recipe, in my gram's handwriting, I never knew her so the recipe is double special.  I hope you begin to feel better soon, keep us posted, take care.  I am plugging along, CML is good for now, this darned depression is kickin' my arse!

Pam

[simone4]

Susan, I was just reading you post. Nausea is sometimes cardiac related.

Are you vomiting?  You take Nexium, right?  Have you been to your

GP about this?  Sometimes dehydration can cause nausea, so drink

a large glass of water and see if it abates.

I hope it resolves itself without having any more doctor appts.

Take care.  I am thinking of you.

Simone

[pamsouth]

CML SUR,

Regarding your comment

"I wonder if it has more to do with the fact that our blog site is very active and they are having a hard time monitoring it. "

I was thinking along those very lines.  I recently spoke with my oncologist nurse (on the phone) and mentioned something that was said on this site.  I think it bothered her a bit &  she said; "when someone has a problem they post, then everyone chimes in, and it becomes a bit skewed."  I said some of these CML patients also work in the medical field and many are very knowledgeable, and we also share the latest CML reports and clinical trial.  You get to share in everyone experiences not just read about from  the info that comes from the TKI, but from real people with real CML who take TKI's.  She backed off and said oh yes I'm sure that is true, or something like that. I can't remember the conversation word for word but I think she got the idea.  But for some reason I got the impression she was impressed with the board sharing their versions.  I wonder if there are doctors and other who might feel that way.

I sometimes wonder if it might be a bit intimating for the medical field to listen to our questions and challenges and I wonder if perhaps we might know more then some of them or at least trying to educate ourselves so we can make informed decisions and know what is going on.

In the old days many doctors and nurses didn't like to be challenged.  

Well I see I have drifted way off from where I started.  Yep way off. 

PamSouth

[hannibellemo]

Hi,

I just wanted to let everyone know that spammers that have been affecting the LLS site have not touched our discussion board (knock wood). Go back and read Pam Martin's description, that was right on. The people who hae been questionable in terms of truly having CML are just creeps, not spammers. There is probably nothing anyone can do about them. I said it before, I liken them to the phone calls I used to make in middle school pretending to be someone I wasn't. At the time I thought it was funny but of course it was just stupid and thoughtless.

The spammers that have been affecting the LLS number in the thousands and completely disrupt one's ability to use the site. It may take awhile for the LLS IT group to be able to reopen to new members so I am glad that everyone (registered or not) is still able to read and search even if they can't post. Thanks for pointing that out Pam M!

Pat