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Pitchforks and Torches

Started by mikefromillinois , Jan 25 2016 12:10 PM

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11 replies to this topic

#1 mikefromillinois

Advanced Member

Members
93 posts

Posted 25 January 2016 - 12:10 PM

LLS announces a "new" forum and many folks "virtually" rally to take up pitchforks and torches and storm the castle where the evil Dr. Frankenstein is creating the monster. Just like in the movie.

I've been coming here for several years - back to the days that it was the "old forum". I am also a regular visitor at a few other special interest forums. It seems that ALL forums regularly change their format. Not sure why that is but my guess is the administrators choose to make enhancements to the product they are hosting. Whenever a site changes a forum I have grown used to I am aggravated because I'm an old dog and I don't really like to learn a lot of new tricks. I get comfortable with what I know - I'm not crazy about change. But eventually I adjust to the changes and usually end up liking the "new" forum more than the old one. That's just me.

I keep waiting for someone to step up and defend LLS in this matter. Sadly that hasn't happened. So I will say a few words. We pay NOTHING to come here and learn about our CML. NOTHING. And I think that most here would agree that we learn more here than in the offices of our doctors. LLS pays to provide us with this free service - hosting a site like this costs money. They ask for nothing in return from us. Yet the attitude I see here - and the lack of GRATITUDE - is much along the lines of when someone pays a lot of money for something and then feels that they have not gotten their money's worth. I also see what smacks of entitlement in the way some people are complaining how they are being "done wrong".

I can relate to the idea that LLS maybe should have sought more user input before effecting any changes - BUT - I have also witnessed many times the old adage that if you want to put a good idea to death...just send it to a committee.

At the end of the day it is their site and their money. They don't have to ask our permission for anything. And in my opinion, to attack them for exercising their right to make changes is out of line.

TO LLS: From the heart, my sincere THANK YOU for all of your efforts over the years as you have provided me with a place to learn about my disease. I will always be grateful and will keep coming here no matter what format you change to.

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#2 pammartin

Advanced Member

Members
631 posts

LocationPennsylvania

Posted 25 January 2016 - 12:40 PM

We humans do not like change no matter what it is. From the outside looking in, I have less concern with new people searching and finding links because they have not previously navigated this or former boards.

I do believe the new site is a bit too much like a Facebook page, and I do believe it is going to be harder to find information and posts that one is following. I became a lurker a while back, most of my information is outdated to the ones searching for support. That, and I admit I never really learned anything beyond the basics with CML, testing, and changes.

We are all thankful for LLS and whatever we receive, but there is also the old adage my father lived by, 'if it isn't broke, then don't fix it'.

Unless I missed it, which is entirely possible there is no more 'Let's Just Talk' forum which at times was very active, including politics, family life, and a large thread containing posts of all my critters. Someone had to like it to create 6 pages or more. Sometimes we read the items we wish to read then it is nice to chill in another avenue, even if with some of the same people.

From what I am reading LLS reached out to several members, including myself about the new forum. So in essence they did ask our opinion and feedback on the new update. I am of the idea if one asks for my opinion, then be prepared for my answer. To date I have not received any contact, perhaps they are waiting till we have a chance to navigate the new forums before asking.

I do disagree, in a sense about LLS being 'their site' and 'their money'. In one way or another many of us have contributed to LLS. I am uncomfortable with the word 'their'. It separates. I believe it is 'our' place. LLS and members are all in this together. Giving help, support, knowledge, and care for those with horrible diseases.

This post and about $2.50 will buy you a coffee at some places. I can't end this without some kind of humor.

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#3 Pin

Advanced Member

Members
202 posts

Posted 26 January 2016 - 11:30 PM

Wow, I have been gone a while - I didn't know this was happening, can someone please point me to where the information about the changes are?

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14

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#4 Buzzm1

Advanced Member

Members
972 posts

LocationSilicon Valley

Posted 26 January 2016 - 11:35 PM

Wow, I have been gone a while - I didn't know this was happening, can someone please point me to where the information about the changes are?

Trey's critique http://community.lls...-need/?p=182480

Trey's thread about the new forum http://community.lls...-need/?p=182221

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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

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

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#5 winespritzer

Advanced Member

Members
101 posts

Posted 26 January 2016 - 11:57 PM

Too much for this reply but my understanding is current bds will remain open, new site going up on 2.1 and folks can use either existing bds., new site or both.
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

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#6 Buzzm1

Advanced Member

Members
972 posts

LocationSilicon Valley

Posted 26 January 2016 - 11:59 PM

Too much for this reply but my understanding is current bds will remain open, new site going up on 2.1 and folks can use either existing bds., new site or both.
Winespritzer

thanks for that info Winespritzer ... the new forum IMOO has no redeeming social merit ...

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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

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

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#7 Trey

Advanced Member

PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 27 January 2016 - 09:47 AM

L&LS has heard our inputs and has decided to keep the current Discussion Boards open. They will open the second site on Feb 1 and see if it is useful for some purposes. This is great news and shows us the L&LS is supportive of our needs. Thanks, L&LS.

See more info here:

http://community.lls...-we-need/page-3

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#8 Harper3994

Advanced Member

Members
56 posts

LocationTrinity, Florida

Posted 27 January 2016 - 09:52 AM

Thanks Trey for following all this for us.

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#9 Buzzm1

Advanced Member

Members
972 posts

LocationSilicon Valley

Posted 27 January 2016 - 09:52 AM

L&LS has heard our inputs and has decided to keep the current Discussion Boards open. They will open the second site on Feb 1 and see if it is useful for some purposes. This is great news and shows us the L&LS is supportive of our needs. Thanks, L&LS.

See more info here:

http://community.lls...-we-need/page-3

LIKE

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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

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

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#10 MarCap73

Advanced Member

Members
48 posts

Posted 27 January 2016 - 10:41 AM

As a newbie to CML and this forum I have found this board and the experience of all of you to be invaluable. I am grateful to everyone who contacted LLS to let them know how much this board means to us and I thank LLS for listening to our needs.

Dx: 11/2015

Sprycel: 100mg

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

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#11 pammartin

Advanced Member

Members
631 posts

LocationPennsylvania

Posted 27 January 2016 - 11:26 AM

Thank You

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#12 soundoff

Advanced Member

Members
129 posts

Posted 27 January 2016 - 11:43 AM

My issues with LLS are they delete all the old posts when they make a new format change. The chat room is a joke with a bully moderator. I volunteer for local LLS events and the "money" comes from events and donations. I don't need Facebook, otherwise I would just use Facebook. Don't belittle people for opposing LLS changes.

Soundoff