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

Started by Trey , Jan 19 2016 09:05 PM
L&LS New Site

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#121 Red Cross Kirk

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Posted 24 January 2018 - 08:29 PM

If anyone wants to comment on the daily poll, which LLS is trying to keep their clutter mixed in with the postings, comment here:

 

https://communityvie...s.org/dashboard

 

Here was my comment:

 

"Never."   LLS articles become clutter when mixed with the posts, even if worthwhile reading. The articles should be put someplace other than in among the postings. That way everyone can have what they want from the site. Clutter drives people away and makes the site hard to use. It is not an either/or proposition. Move the clutter to some other part of the site.

 

While answering this poll question I see another really bad part about the Community site.  It puts the oldest comments up first, so you need to go all the way to the bottom to see the most recent one.  Who does that????

Yeah, I love the feature on this board where you just log in and then it remembers which posts you've already viewed.  I don't really care for the "Load more" tab on the other one.  The "next unread topic" button is my favorite in this format.


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%

#122 crob20

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Posted 24 January 2018 - 09:37 PM

This board has been the best thing in helping me cope with CML for the last 9 years. I didn't know of the threat of losing this board. The posts on here have helped me improve my quality of life.
Diagnosed 3/09 121,000 WBC. Asymptomatic
Imatinib 400 mg started
2/10 PCRU
3/16 still PCRU but side effects worse. Stopped Imatinib for a week. Tried Sprycel 2 days.
4/16 restarted Imatinib at 300 mg.
6/16 showed 1 transcript
9/16 PCRU returned
5/1/17 Imatinib 200 mg
8/17 showed "1 transcript"
10/17 PCRU returned

#123 hannibellemo

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Posted 25 January 2018 - 08:41 AM

Wow, I realized I hadn't been on here much in the past year and I was shocked but I mistakenly thought the old forum was safe! Now I am devastated to think this forum is being threatened once again.

 

I tried the new "community" forum when it first came out and found it less than useful. I've always hated the facebook-type format, everyone posting over everyone else, never knowing who is responding to whom or what is being responded to at all. I was shocked at the ignorance and wrong information being posted.

 

I found myself encouraging people to move over to this site instead for better information and got my hands slapped more than once for it.

 

Sites like these are expensive to keep up, there is no doubt about that, but the benefits derived, as we well know, are priceless. They may lure more people to the "community" but I wonder how many are dedicated to truly helping the newcomer like Trey, Scuba and Buzz and so many others?

 

I thought we were safe after the last fight...here we go again.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#124 kat73

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Posted 25 January 2018 - 11:14 AM

I couldn't agree more with Trey and others about the "push" clutter.  Most everybody on this forum knows how to research ASH abstracts and follow studies, etc.  I have very occasionally found something of interest at LLS, but almost all of it is fund-raising oriented.  Sure there's a place for what they want, but it has nothing to do with providing what we get and need from this forum.  So, the two should not be intermingled.

 

Do you think someone could scoop up this entire thread and send it to LLS as comments?


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

#125 AdamJ

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Posted 25 January 2018 - 11:30 AM

I sent them a link to this thread and asked them to comment on it.  I believe that if they really cared they would agree to discuss things.

 

Personally I think as many of us as possible should start new threads expressing "what's on our mind" over in the new forum:

https://communityvie...yeloid-leukemia

 

They may still ignore us, of course.


3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU

#126 Red Cross Kirk

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Posted 25 January 2018 - 11:31 AM

I just got off the phone with Dr. Nichols.  We had a productive conversation about the proposed change to the discussion boards.  I advocated for a delay until the tools we need can be implemented on the newer format. I'm hoping we can weather this change without losing anyone from our discussion community!


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%

#127 scuba

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Posted 25 January 2018 - 12:43 PM

Kirk,

 

Did Dr. Nichols give a commitment to you?


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"

#128 Red Cross Kirk

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Posted 25 January 2018 - 01:13 PM

Kirk,

 

Did Dr. Nichols give a commitment to you?

She didn't commit to extend the end of this board.  She did commit to put me in touch with Dr. Saltzman. I'm not sure who has final say on what happens to us here. :(


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%

#129 blueheron

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Posted 25 January 2018 - 02:45 PM

To think of all the first hand accounts of dealing with all aspects of TKIs and more going back YEARS being trashed because they can't run a message board on a computer just boggles the mind.


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

#130 Trey

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Posted 25 January 2018 - 09:03 PM

Switching the discussion to here:

http://community.lls...omised-changes/


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