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LLS Community-- help understanding it


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#1 tiredblood

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Posted 18 November 2017 - 03:45 PM

Can someone please help me better understand the LLS Community feature of the website.  I don't understand it. When I go to it, it seems to me I'm asked random survey questions that don't have anything to do with my diagnosis, or the posts are for patients with various diagnosis.  Maybe it's the brain fog or I'm missing something. It does want me to complete my profile, but seems to want more info than I'm comfortable providing.  I do see the "follow" section on CML, however.



#2 Trey

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Posted 19 November 2017 - 10:10 AM

"LLS Community" was a failed attempt to replace this Discussion Board support site with one focused on making us into survey lab rats, but we puked on that idea because it did not work for us, so LLS changed their mind and kept this site open.  The "Community" site now only confuses people into thinking they can get support over there, and is primarily a "push site" for LLS.  I wish LLS would close it down to avoid confusing those who post over there since they do not get any where near the level of information and support available over here, which is sad for them.  But LLS tries to push people over there.  Some family wanted to fund the site in honor of their son who died, so that is why it is still up. 



#3 kat73

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Posted 19 November 2017 - 12:28 PM

Aha!  So that must be where the complete article was printed that I can't get.  Under the Weekly Activity Summary thingie, apparently.  Nah, I don't want to sign up for anything  else; I'll stay here.  But I sure wish I could get my hands on the article without having to pay or join anything.  It was the results of a multi-center Italian study on the effectiveness of very low dose dasatinib, the lack of resistance developing in the cohort, and, I think, the successful avoidance of recurrent pleural effusions.


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.


#4 ROMO

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Posted 19 November 2017 - 03:02 PM

http://onlinelibrary.../ajh.21871/full

 

This might be it.

 

Romo


DX August 2016. WBC ~160K
PH+ Cells 36%
No Spleen enlargement
No Symptoms. Other counts ~Normal
BCR-ABL p210 (Detected)
BCR-ABL p190 (Not Detected)
 
Sprycel 100mg.
PCR   02/01/2017    0.146 IS
PCR   08/07/2017    0.022 IS
Next PCR:           12/XX/2017
 

#5 tiredblood

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Posted 19 November 2017 - 09:32 PM

I used to volunteer for a small organization that would not accept provisional gifts. The more I think about it, the more I think that is a good idea.  I think this helped to ensure that the mission and integrity of the organization remained intact.



#6 kat73

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Posted 20 November 2017 - 03:15 PM

ROMO - Thanks, that's not it exactly, but good guess.  I finally found it - it must have been released to the general digital public since I last searched with Google.  It's from Annals of Hematology Sept. 2017, entitled:  Pleural effusion and molecular response in dasatinib-treated chronic myeloid leukemia patients in a real-life Italian multicenter series.  Lead author A. Iurio.


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.





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