21 replies to this topic

[hannibellemo]

I need my daily 'Living with CML' fix - I try to take it right along with my G! There are very view posters on either site now. Is that because we all feel so good today there's nothing to say? Let's hope so.

[MomMom]

Hi, Hanni,

I finally found my way back to the posts for CML.  Navigating the new site is not easy for me yet.  I am going to add the CML posting site as a favorite and see if it stays that way.

I've been  having gastro porblems all weekend and still can't stay out of the bathroom (TMI, I know) but we've no secrets and no dignity left here.  Better today, still afraid to take imodium for it makes me have other problems then.

The newest thing is a back and hip problem,  Do any of you have this?  I've had hip joint pain before, but this is different.  It is painful to get up out of a chair or a car.  The other problem I have is that the iron infusion although it helped, my red cells are better, but my hematicrit is still low.  Do any of you know about this?  Trey, you may have some knowledge of this problem, too.

Work has kept me very busy the last week or so and now I feel very disconnected from all of you.  Let's get this new site up and going.

Kay

[DEE11]

Under search just type cml .. hope this helps

[hannibellemo]

I don't think so, Dee 11...I've bookmarked the new Living with ... CML and where you sent me isn't it. At the top of my screen it says The Leukemia & Lymphoma Society Community>LLS Blood Cancer Discussion Boards>Living with...>Chronic Myelogenous Leukemia.

This works just like the old BBS but with a lot more options. Where you sent me is just the first level.

Pat

[Trey]

The old site has been turned off by the LLS for all postings.  That was too fast, if you ask my humble opinion.  People have been left stranded -- I expected better of LLS.  I was a Beta Tester for LLS.  There were many issues yet to be fixed.  Poor job on the transition.

So the answer is that many people who need help are stranded in limbo trying to figure this out ....

[memy]

Kay!.............Hey darlin'!  I see you've made the transition. Wish you were feeling better. I just saw your name and wanted to say hello to you.  All this is new to us, the more i play around with different aspects of it, the more I learn.  In due time we will all be right at home--just gonna take some time........Hope the family is well and you get to feeling better soon.  I still don't know how you keep up with what all you do. It is very admirable.............Mimi

[SheilaW]

Hey everyone...I made it too!  I am concerned that some people may not have been on for a week or so and when they come back they will not know what happened since the other board was "turned off".  I really want to know how some people are doing...how is Beth for instance since the mutation?  They have all our email addresses...can't they just send out a message to all about the change?

Oh well...hopefully we will all get used to it soon...

Sheila

[smare]

I agree 100% with your Trey.  I am on old-timer here and I can only imagine how the new people must feel....lost.

LLS sorta of sprang this on us without much warning... I suppose all we can do now is get used to it.

S.

[ChrisC]

Well begun is half done — that's a quick beginning for the new board, and since we're beginning to show up and express ourselves, we'll make it work for us. Good to see us finding our way. Good health to everyone!

[John]

Yep, It's good to see everyone showing up over here.  This site is so critical for people newly DX. I know I would have been lost without the information on this board.  I think the thing the actually bugs me the most about the new site is the discussion list view.  I wish topics I've already read turned a differnt color and I wish I could see the number of posts for a topic on the discussion list screen.  I guess what I'm really saying is I would like to duplicate a little bit of the old interface.

John

[VickiW]

Finally!  I made it!!!!  would you believe the only way I was finally able to join in over here was to drop one of my firewalls?????  I could get logged in but couldn't post anything.

GGGEEEEZZZZ!!!  Support was no help so I had to figure this out by myself.  How many others are just "hanging" out there I wonder????

Oh well, at least I made it.

Vicki

[mjbayes]

Hi Everyone,

   Boy, I wasn't on the board for awhile and was I surprised to sign on to find the old board obsolete. Anyway, I made my way to this board. Still have lots to learn about it but have saved the link to favorites and hope that

it all comes together. Hard to get used to something "new and improved"???  I guess we all liked the old site.

Anyway so happy to see familiar names and know I have landed in the right place.

Mary

[DEE11]

Kay gr8 2 c u!!!! The hip pain i can relate to. My left hip will hurt comes on sudden worse at night... Few monthe ago i was walking and all of a sudden i was hunched over . My back felt like it was broken . pain came and went .. Then when my hubby and i were out walking in a store all of a sudden i was limping for  bad ankle pain.. that  too lasted for a bit then left.... i guess bone pain is,nt uncommon.. considering the drugs we are on...and bone marrow issues. Hope you feel better and keep the other issues all behind you <<< bad huh lol.. just trying to make light of it. Have fun on your trip !

[Sloater]

I was lost in the shuffle as well...  we had so much valuable information on the other site.  Change is something we will all have to live with...  By the way my PCR results came in and it is the best scores ever after switching to Sprycel...  I went from 20,000/1500/800 to 100/0/0  time to celebrate... 

What is, is...

Sloater

[PhilB]

Congratulations Sloater - great news on the PCR

What is, is...getting better!

Phil

[BethG]

Woo hoo Sloater! Great news! I'm so happy for you! yee haw...

[maryjeffsm]

You know's it hard to understand something new. Believe me, I have been chewing on my eraser, wondering

what the heck I am doing.

I did like the old system, but will try to understand the new. I've gotten this far, so I do now feel pretty good.

Mary

[Susan61]

Hi:  I think a lot of us are having trouble with the new system.  I have been trying to get on now for weeks,

and finally I had to talk to someone on the phone.  They were getting my e-mails, but could not reach me

with my confirmation.  As everyone gets straightened out, you should see everyone back on again.

      We will get used to the new program.  I am picking it up pretty good, and just got on now.

[MomMom]

Great to have you back, Susan.  I wasn't much help in getting  you here.  We are all tryin our best to make it happen.

[Susan61]

Hi Mom Mom:

       Thanks for trying to help me.  Just glad I got back on here.  Just  have to get used to this.

       Hope your doing okay.