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Hints and Tricks for the New Community Page


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#1 hannibellemo

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Posted 30 January 2018 - 12:27 PM

For those of us who have used the Community Page in the past I thought it might be helpful to post some ideas that could help the newcomers.

 

I'll go first!   :)

 

 

For those who have just gone on the Community page, said "Yikes" and left. There are ways to make the experience "better". The first thing I did was go to Groups and choose which ones I wanted to be a part of.  Look for Groups on the right hand side of your home page. Click on Customize and choose the ones you want. The Groups you chose will then be listed under My Groups (make sure they are all there)

 

If you only want to look at one particular group you can click on it there. Otherwise, the only groups that should show up on the home page are posts from the group you chose. Plus, I assume, posts that LLS shows that we have no control over.

 

That will eliminate seeing all the posts that you have no interest in. If you ever want to see them you can add them to your groups or just on in Groups and click on that particular group.

 

 

This from Red Cross Kirk:

 

There's a thing over there called "MY STORY".  You can access it by clicking on your user name at the top of the page, you will be delivered to the page with "MY STORY".  Come back to this forum and copy your signature.  Go back to the new forum and click on the big red "Edit my story" button toward the bottom.  Paste your info there and then click the "Save" button.

 

It's not exactly the signature thingy we have here, but it's easily accessible when someone clicks on your user name.

 

Hope this helps.  :wacko:

 

And this from campanula:

 

Last night I signed into the LLS Community.  RED FLAG:  to sign up, you have to give your name, e-mail address and birth date.  This will show up for anyone to see when they click on your name, unless you adjust privacy settings.  To do this, click on the "gear" icon next to your user name in the upper right hand corner, and choose "Privacy Settings."  Enter "LLS Researcher" as the only person who will be able to see all information.  (I would appreciate it if someone would let me know if they can ever see more than "campanula" and "diagnosed" on mine). 

 

I also signed up for https://www.cmlsupport.org.uk/forum/1 and plan to use both sites for awhile.


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>


#2 shweflen

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Posted 30 January 2018 - 12:43 PM

What is the URL for the new community page?  I'm not sure where to look.  Thanks.


10/20/2016 BCR-ABL:ABL = 81.622

01/11/2017 BCR-ABL:ABL =   8.028

04/12/2017 BCR-ABL:ABL =   0.157

07/07/2017 BCR-ABL:ABL =   0.000

10/04/2017 BCR-ABL:ABL =   0.041

11/28/2017 BCR-ABL:ABL =   0.000

 

 


#3 scuba

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Posted 30 January 2018 - 01:31 PM

Hi Pat,

 

I joined the U.K. site and started a new thread:

 

https://www.cmlsuppo...ls-cml-group-us

 

It might serve our needs in having a thread based system with titles, and what we're familiar with. All here might go check it out.

 

I'll miss this forum. I might even miss Trey (although Trey should check out the U.K. site). 


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"


#4 kat73

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Posted 30 January 2018 - 04:37 PM

Thank you, Pat (hannibellimo) for your tricks.  However, I spent a tedious 10 minutes "unfollowing" about 30 groups because they were all in the default "follow" mode.  And THEN, after I was through with that, I saw that only two "follow" groups were listed for me, and I had actually chosen about 4.  I can't bear to go back and do it all over again.  There is none of this nonsense and yes, "paperwork" over at the UK site.


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.


#5 hannibellemo

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Posted 30 January 2018 - 04:58 PM

shweflen, here is the link:

 

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


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>


#6 hannibellemo

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Posted 30 January 2018 - 05:06 PM

scuba,

 

I joined the UK site this morning. I'll give it a try, but I'd rather see if we can make this Community site more workable for us. I'm not ready to throw in the towel yet.

 

kat73, I know what you mean, I'm kind of a literal person so when they all said "unfollow" I thought that meant I had to click that button to unfollow that group. Not so! Evidently, I had already unfollowed them  2 years ago when I first signed up and that is a status button. (My word for it).

 

Still, as I said above, I'm going to give this a go and see if LLS lives up to their promises.

 

I swear I get teary every time I think about losing this site and I do NOT like to cry!


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>


#7 kat73

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Posted 30 January 2018 - 07:15 PM

Ah, OK.  I'll go back and follow-unfollow-follow, etc.

 

Yes, so, so, so sad . . . and MAD!


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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