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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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#101 campanula

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Posted 23 January 2018 - 03:19 PM

Great idea - I can donate money to this forum, too.


Dx 2/16: PCR = 59.4%

BMB showed second translocation.

400 mg generic Imatinib

5/16:  PCR = 0.88%

8/16: PCR = 0.04%

11/16 PCR = 0.01%

2/17 PCR < 0.01%

2/17 BMB results:  all translocations gone.

6/17 PCR = 0.03%

9/17 PCR = 0.01%

1/18 PCR = 0.01%

 

 

#102 JackRyan8311

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Posted 23 January 2018 - 03:44 PM

This is so frustrating reading all the posts, Tomorrow I'm having my 1st PCR test post diagnosis and starting Imatinib..this is the one place I felt could share if the positive of it all besides my family. I willing to follow the group.
Diagnosed 9/15/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017

#103 kat73

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Posted 23 January 2018 - 04:24 PM

I'd like to add my voice to the complaints going to LLS - what is the best contact info to go directly to the right person?


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.

#104 Jan0080

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Posted 23 January 2018 - 04:51 PM

https://www.lls.org/contact/contact-us

 

Use the "Contact us"  It allows sending a short e-mail after filling out a bunch of info.


Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!

Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.

#105 kat73

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Posted 23 January 2018 - 05:51 PM

Thanks.


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.

#106 blueheron

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Posted 23 January 2018 - 08:15 PM

I can't believe they're doing this to us again. What a nightmare. It's such a shame they can't archive the whole thing, all that experience lost. Priceless experience just tossed down the chute because they couldn't figure out how to maintain a message board of all things. So pathetic.


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

#107 AdamJ

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Posted 23 January 2018 - 09:13 PM

It is not that they can't, either out of ignorance or lack of concern, they are choosing not to archive it. These forum posts are stored in a database and should be somewhat easily converted to populate another database (either for another forum, or some type of archive). It is truly a shame to waste all of this data and makes me feel like we should not trust LLS anymore.  People put so much energy into this forum and LLS clearly couldn't care less about it.

 

I can't believe they're doing this to us again. What a nightmare. It's such a shame they can't archive the whole thing, all that experience lost. Priceless experience just tossed down the chute because they couldn't figure out how to maintain a message board of all things. So pathetic.


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

#108 Red Cross Kirk

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Posted 23 January 2018 - 09:16 PM

I have good news!   :)  :)  :)  I spoke with someone I know who gives large sums of money to the LLS.  I explained our plight and they said that they would advocate for us with their contact at the LLS.  Here's hoping that we can keep this forum for many years to come!


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%

#109 AdamJ

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Posted 23 January 2018 - 10:12 PM

Thank you Kirk, that is great news and much appreciated!


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

#110 Melanie

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Posted 23 January 2018 - 11:48 PM

Me too!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#111 Red Cross Kirk

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Posted 24 January 2018 - 12:13 AM

Thank you Kirk, that is great news and much appreciated!

 

I figure if we badger them enough then they'll realize we really do like this forum the way it is. :angry:


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%

#112 Antilogical

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Posted 24 January 2018 - 02:16 AM

Until we find something better, one option is to create a new, closed Facebook group for ourselves.  We'll call it "The Old LLS Community Forum for CML", or something ridiculous like that.  We can pin important links - like Trey's blog to the top.  Every so often, we could add a post in the LLS CommunityView group to let folks know where to find us.  Just a thought....


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.

#113 Trey

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Posted 24 January 2018 - 09:27 AM

I think LLS has heard us.  We will see if they are serious, though.  After communicating with them, they are going to ask us what we need to make "Community" work.  LLS blew off my comments 2 years ago and so their Community is useless.  I am willing to give them one last chance to support us.

 

I provided the following:

 

The things we MUST have at a minimum are:

 

Create a "New Post" function in place of "What is on your mind", and make posting work like the current site.  Posts must have titles -- create a title block on them.

 

Enable editing of posts once they are posted.  Sometimes we make mistakes and want to correct them.  The information must be accurate.

 

Separate the LLS "push" stuff from the discussions.  We really do not care about the LLS "push" stuff and it is just clutter to us.

 

Enable messaging between Members.

 

Enable search of posts by Member by clicking on Member name.

 

It would also be much, much better to save old posts longer then 1 year.  If you can do one year, then you can do 3 years.

 

Essentially the Community site posting needs to work like the current site.  Posts must be the priority of the Community site, not the LLS "Push" stuff.


Edited by Trey, 24 January 2018 - 09:47 AM.

#114 Kali

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Posted 24 January 2018 - 09:35 AM

Trey,

Awesome news!!!! Thank you for sharing this hopeful information.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%

#115 scuba

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Posted 24 January 2018 - 10:06 AM

I think LLS has heard us.  We will see if they are serious, though.  After communicating with them, they are going to ask us what we need to make "Community" work.  LLS blew off my comments 2 years ago and so their Community is useless.  I am willing to give them one last chance to support us.

 

I provided the following:

 

The things we MUST have at a minimum are:

 

Create a "New Post" function in place of "What is on your mind", and make posting work like the current site.  Posts must have titles -- create a title block on them.

 

Enable editing of posts once they are posted.  Sometimes we make mistakes and want to correct them.  The information must be accurate.

 

Separate the LLS "push" stuff from the discussions.  We really do not care about the LLS "push" stuff and it is just clutter to us.

 

Enable messaging between Members.

 

Enable search of posts by Member by clicking on Member name.

 

It would also be much, much better to save old posts longer then 1 year.  If you can do one year, then you can do 3 years.

 

Essentially the Community site posting needs to work like the current site.  Posts must be the priority of the Community site, not the LLS "Push" stuff.

 

Gee ....  sounds like what we already have. Why are they trying to re-invent the wheel. Just support this forum as they have been doing.

It's not a technical issue. It is a political issue. For some reason, they want to force the new format on us. Hopefully this will not happen.


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"

#116 AdamJ

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Posted 24 January 2018 - 01:27 PM

Today I got an email from them with the "question of the day".  I think it is related to the new forum. It looks to me like they want to justify ignoring Trey's feedback (Separate the LLS "push" stuff from the discussions.  We really do not care about the LLS "push" stuff and it is just clutter to us) by putting things to a vote: "On LLS Community, we often post publications with summaries of new research findings in blood cancer, from across a number of articles. Do you find these articles valuable?". 

 

I don't think the timing is a coincidence.

They should be asking which format people prefer not seeking validation of specific aspects of the new format.


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

#117 carrie

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Posted 24 January 2018 - 03:25 PM

I like this site just the way it is.

I don't want a social media type of site.

I will give it a chance but I don't think I will like it better than what we have now.

Sad

Boo Hoo


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.

#118 Buzzm1

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Posted 24 January 2018 - 08:01 PM

There isn't any way that LLS's new forum can replicate the functionality of this existing forum..  


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

#119 Trey

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Posted 24 January 2018 - 08:13 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????


#120 LouiseS

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Posted 24 January 2018 - 08:15 PM

I have only been a member here for a few months but it's been invaluable and I will sorely miss it. Thanks for fighting to keep as much of its functionality as possible.
Louise
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