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User generated polls in the CML forum

Started by tiredblood , Apr 11 2016 11:40 AM

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3 replies to this topic

#1 tiredblood

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Posted 11 April 2016 - 11:40 AM

Has there ever been the option of a user-generated poll feature in the CML forum? There are times I think I'd like this feature in the CML specific forum.

Let me add to this, there are times, I'd like a chat feature too (not the social worker get in touch with your feelings Thursday night chat).

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#2 Buzzm1

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LocationSilicon Valley

Posted 11 April 2016 - 08:33 PM

Has there ever been the option of a user-generated poll feature in the CML forum? There are times I think I'd like this feature in the CML specific forum.

Let me add to this, there are times, I'd like a chat feature too (not the social worker get in touch with your feelings Thursday night chat).

You can ask the forum software developer to see if they have the poll feature:

http://bit.ly/1N5hKWs

https://invisionpower.com/contact-us

and if they do, lobby the administrator of this forum to activate it

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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#3 Dom

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186 posts

LocationNew Jersey

Posted 12 April 2016 - 06:25 PM

Buzz, I'd like a chat feature too, except that often in a chat you get important information that really should be a thread in the forum. I'd be wary of polls though. They're fun, but too often people forget that you have a skewed sample. When I had a case of tinnitus that brought me to my knees, the polls at the tinnitus forum actually misled me. I ended up taking ginko biloba, which I now think is useless. Just my $.02.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66

(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34

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#4 tiredblood

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474 posts

Posted 12 April 2016 - 09:37 PM

I participated on a religious discussion board where the poll and results were at the top of the discussion thread. Members could participate in the poll and/or discussion. Most people participated in both,elaborating on their poll choice. Much like the one in the new LLS community, except IIRC, it covers the various blood cancers collectively. I'm not sure, but the poll questions in the new LLS community strike me as being LLS-generated versus user-generated.

As far as a chat feature, for instance, there are questions I'd like to ask that I'd be more comfortable asking in a not so public forum such as chat. For instance, I'm sort of entertained when the male posters joke around about sharts, and am not offended in any way whatsoever. However, being female, I'm less likely to discuss bodily functions in the forum that the world can see.