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LLS New Site -- Major Changes, But Are They What We Need?

L&LS New Site

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#21 Buzzm1

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Posted 21 January 2016 - 11:04 AM

frankly, if managing a discussion forum wasn't such a pain-in-the-*ss, I think many of us would agree that Trey should start his own CML discussion forum, to do with as he pleases.  

 

It most certainly would be much better than what we are being forced into.

 

Trey, have you had any thoughts on this?


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#22 Buzzm1

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Posted 23 January 2016 - 06:27 PM

note that the "other forum" has absolutely zero, nada, nothing, in the way of text enhancement tools

 

no bolding

no italic

no font selection

no sizing ...

nothing at all


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#23 Tucker1

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Posted 23 January 2016 - 09:33 PM

I emailed LLS administration to voice my desire to keep the discussion board the same and I got an email and they want to talk to me and explain I guess what the new site will be like. I wonder if this is my first warning.
Dx: 11/2004 intermediate risk 400 mg Gleevec
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403

#24 MarCap73

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Posted 23 January 2016 - 10:44 PM

I emailed LLS administration to voice my desire to keep the discussion board the same and I got an email and they want to talk to me and explain I guess what the new site will be like. I wonder if this is my first warning.

 

I received an email response as well stating. " I would very much like to speak with you concerning your insights as well as sharing with you the bigger picture of what is planned."


Dx: 11/2015

Sprycel: 100mg

 

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

 

 


#25 Teddybear

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Posted 24 January 2016 - 12:25 AM

I'm on the NHL board and also contacted lls about my displeasure and concerns about the changes and got the same response. They want my phone number and a time they can call to discuss things. I'm not comfortable giving out my number. Just want them to leave things alone.

#26 Buzzm1

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Posted 24 January 2016 - 09:17 AM

I'm on the NHL board and also contacted lls about my displeasure and concerns about the changes and got the same response. They want my phone number and a time they can call to discuss things. I'm not comfortable giving out my number. Just want them to leave things alone.

much like Facebook, the "new forum" is a personal data gathering website.  


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#27 Trey

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Posted 24 January 2016 - 09:50 AM

I was contacted by email mid last week, asked to provide times for a discussion.  I told him any time on Friday.  Never got a response. 



#28 Buzzm1

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Posted 24 January 2016 - 10:30 AM

it's really a piss-poor discussion format*; the worst I have ever seen;

 

next they are going to feed us indoctrination bullsh*t.

 

in the meantime, try to ignore all of the extra robocalls and email solicitations that show up.

 

does anybody know of another CML discussion forum?   

 

 

*It's the type of format found in responses to a preceding article  ... it doesn't make a lot of sense being used the way it is.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#29 mscl

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Posted 24 January 2016 - 04:41 PM

I received that same email as well.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.

#30 missjoy

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Posted 24 January 2016 - 05:56 PM

What about we vote for maintaining the forum as it is? We can email the vote to LLS admin.

#31 rcase13

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Posted 24 January 2016 - 07:23 PM

The public votes for things and the city council does what they want to do not what the people want. I fear the same will be done here. But I sent my opinion in anyway. We can hope I guess.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#32 Teddybear

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Posted 24 January 2016 - 07:58 PM

If they truely want to discuss this why not do it on the boards where all the people that use them can voice their concerns?

#33 pammartin

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Posted 24 January 2016 - 09:28 PM

I received a PM, asking for input. Perhaps they are waiting until we view the site for a time.

 

I believe although it can be navigated it is also cluttered and disorganized. 

 

The newbies coming in may not have as much trouble because they have never navigated these boards.  I am a member of Facebook and it is a love/hate relationship.  Some days it is great, others I could log off never to return.

 

This is a good place with good people.  The new site removes the immediate ability to see that and to know one is among friends.



#34 mdszj

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Posted 24 January 2016 - 09:31 PM

What is the possibility we could establish another forum on another site?  For example, the National CML Society seems to be pretty above-board, looking at their site.  I do not believe they have a forum for patients at this time but maybe they would consider creating and hosting one.   I am not an IT guy but I think starting up a forum should be a very doable thing technically.  Here is a link to their site: http://www.nationalc....org/living-cml

 

ANyway I also sent an email to LLS today and said I dont want to sign up for facebook, give my phone number out, etc.  For me, the only people I talk to about cml or who even know I have it are my immediate family (and I am not even sure they "get it") and my fellow patients, and I am not about to start broadcasting it to the rest of the world at this time.  So get a bleeping clue, LLS!!


dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16


#35 winespritzer

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Posted 24 January 2016 - 09:42 PM

I would feel so disturbed w any changes. I rely totally on the boards for support I can't get from my onc. I am not into social media.I had intended to volunteer with LLS mostly because of the boards. I may just support ACS or DanaFarber.
Winespritzer

CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#36 blueheron

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Posted 24 January 2016 - 10:39 PM

At the new board posts don't rise to the top with each reply - in other words, every new post causes all the ones below to sink down. And there's no overview to quickly see all the posts - you have to scroll down through them one by one. Clunky for sure. Shame to lose these boards here that function normally.

 

Also, each post has a big headline that says "in CHRONIC MYELOID LEUKEMIA" all caps - like we don't know what disease we have. Way to rub it in guys, thanks a bunch! I really want to read that a zillion times scrolling down through posts. Sheesh. What a fiasco this EXCITING NEW EXPERIENCE is.


DX 6/2013

Sprycel 100mg

CCR 3/2015

MMR 2/2016

<.01 IS 10/16 hopkins didn't report actual percentage

.007 IS 6/2017

<.01 12/2017 again no actual percentage but didn't see the report myself yet


#37 thedook

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Posted 26 January 2016 - 02:38 AM

The new site lost me at the whole paradigm of using "What's on your mind?" as the basis for starting a discussion.

I have CML. WHAT THE HECK DO YOU THINK IS ON MY MIND?

No, I don't want to share a picture of my lunch. No, I don't want to share a 140 character status update complete with the hashtag #spyrcelsharts. No, I don't want use some winking face emoticon.

I just want to come to a site where I can learn more about what other CMLers are going through, search through various prior posts about topics relevant to me and maybe add my 2 cents once in a while.

I love social media and technology. But as has been said before, the social media template is not appropriate for everything. These boards are a place for (mostly) serious discussion about a life altering disease. Not a place to drop selfies of me getting my latest round of blood work done or doing a TBT to before I had CML. Please LLS - listen to the voices of reason in this community...not every website in 2016 needs to be Facebook, Twitter or Instagram clones.

#38 r06ue1

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Posted 26 January 2016 - 12:23 PM

Why can't they do both; have one page for Social media (aka, Facebook) and also link to the forums?  

 

There are advantages and disadvantages to one or the other, combining the two seems to be the ultimate solution.  If someone wants to say happy birthday to someone and post pictures of their cat, they can and if someone searches from Google, they can find good information on the forums.  I can tell you that many of my searches over the years have lead me to forums and never to Facebook (or the information there was so poor it wasn't worth having a second look).  Simultaneously, Facebook has let me keep in touch with old friends, wish them a happy birthday and post pictures if I have any good one's (the two times a week I log in to it).  

 

Just a thought.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#39 tinman1939

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Posted 26 January 2016 - 01:38 PM

This is extremely disappointing news. The users of this discussion board should have had more significant input into the decision.



#40 Trey

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Posted 26 January 2016 - 01:42 PM

Based on everyone's inputs above I will summarize the main reasons the new site will not work for us and is not fixable in its current format:

 

The new site is set up pretty much like Facebook as a chatty, picture focused social media format.  It is disorganized, random, and cluttered.

 

The new site is not designed for posting as we know it.  Posting tools are non-existent: 1) Posts are not listed in a user friendly manner; 2) posts do not have titles, so you don't know what they contain; 3) posts do not return to the top with recent comments, so no one knows when someone adds a comment to an existing thread; 4) posts do not show as Unread (bold) or Read; also do not show as new comments added; 5) many other sophisticated posting tools available now do not exist on the new site; 6) posts and random stuff are all jumbled together; 7) overall it takes intense effort to try to follow any posts, and you will not know when new information is added, so response cycles would greatly increase and it will take far more time to use the site. This will get much worse when many people start posting.

 

The site is an "information push" site (L&LS info pushed out to users); Patient interests are not the primary concern of the new site, L&LS interests are primary

 

Too much stuff we don't care about.  L&LS will use it to dispense the stuff they care about.  L&LS folks are very nice and caring people but don't know much about our diseases in case anyone has not figured that out.  What they push out is not very educational.

 

L&LS controls the new site with little user control -- cannot reduce the clutter.  In the future when a lot of users are signed up this clutter will make the site even more burdensome to use.

 

The new site reflects an incorrect viewpoint that we patients need to be fed information from L&LS because we do not know anything about our diseases. The opposite is actually true.

 

Overall the view is the new site does not support posting as we know it and cannot be fixed.






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