Advanced Member
Posted Yesterday, 10:51 AM
Talk about anti-climactic, here I am posting again after a tearful farewell!
Anyway, just noticed that on the Community site there are Private Groups. Is there anyway, for those who know about this stuff, that we could utilize that for our purposes?
That's a very interesting idea! If it's structured like the personal conversations feature, and can have multiple participants, then it would more closely approximate a discussion board. Being that each conversation has a title.
Kirk
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%
Advanced Member
Posted Yesterday, 11:47 AM
Here is their description of the Private Groups:
What are private groups?
Private groups are designed to help specific groups of people engage in a shared dialogue. When you join a private group, your access will be verified by LLS Community staff. You can start conversations and respond to comment in a private environment.
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>
Advanced Member
Posted Yesterday, 12:04 PM
Just checked out the new site- this transition is like going from a station wagon to a clown trike. beep beep!
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
Advanced Member
Posted Yesterday, 12:19 PM
There are a few times that I wish we had a like button. This in one of those, blueheron!
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.
I have posted this under the new topic Hints and Tricks for the Community Page (or something like that).
There were a couple of other ideas that pertained to privacy and using our current signature on the Community site that were helpful to me and and I will copy and post them under Hints and Tricks giving credit to original poster.
Edited by hannibellemo, Yesterday, 12:30 PM.
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>
Advanced Member
Posted Yesterday, 04:09 PM
Advanced Member
Posted Yesterday, 04:58 PM
I think it's communityview.lls.org./sign_in.
Pat - I didn't see Private Groups. Everybody, does that seem like it would work? It sounds like it, doesn't it? We could call it "Rogues," or "Refugees." I know! We could call it, "The REAL CML Discussion Forum," yes?
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.
Advanced Member
Posted Yesterday, 05:13 PM
Pat,
Private Groups would be a subset of a larger group such as CML. Same software and platform, so same posting tools.
Advanced Member
Posted Yesterday, 05:42 PM
I have been working with Dr Saltzman of LLS to improve the Community site, emailing and talking with him regularly. Dr Saltzman is an L&LS patient first and foremost, with two separate blood cancers. So he wants to help. And he is trying to make Community better for us, and has, in my opinion, made good progress in the past couple days. And there are more improvements coming. So I want to suggest that Dr Saltzman is on our side. He is the one who stepped up to deal with the Community issues when everyone else at LLS just told us "too bad, so sad." So I am impressed with Dr Saltzman and his efforts to help.
Here is what he has been done already to resolve issues brought up by us:
Made posting new threads more intuitive. Added a "Start a New Conversation" button (instead of the "What's on Your Mind?") This is already functioning now.
Posts can be edited or deleted by initiator within 48 hours of posting. Functional now.
Internal messaging works without "Friending." Functional now. So the "Friend" function has no value. Please DO NOT SEND FRIEND REQUESTS since it has no purpose and it may be deleted soon.
Coming Soon but Maybe not by February 1:
Old posts from the past couple years should be added soon. The old platform Website Developer company is not being very cooperative on this. So the timing is unknown for now.
Articles will be put into a separate folder instead of in with the posts. There have not been any recently, maybe just due to article cycle timing. So Community already looks less cluttered.
Working on the following issues, but no promises about whether these can be added:
Add titles to posts
Bolding / unbolding posts which have been read (need titles to make this work)
This old site will be shut down on February 1st, and will not be visible as far as we know. Probably will show a broken URL. I would suggest if anyone wants to keep old posts, save them to your own computer instead of migrating them to the new Community site for now. Then maybe add them back in later if they are significant.
So this old site and posts will disappear on February 1st as far as I know, and not be visible again until old posts are migrated over (may take week or weeks). So if there are recent posts anyone cares a lot about, you might want to save them on your own computer.
If you want to continue posting through LLS, here is some information:
Register at LLS Community:
https://communityview.lls.org/
CML portion of LLS Community:
https://communityvie...yeloid-leukemia
Switching to a new post:
http://community.lls...ite-on-feb-1st/
Edited by Trey, Yesterday, 05:58 PM.
Advanced Member
Posted Yesterday, 05:43 PM
For those who are departing this board, I would like to say farewell and thank you for all the support. I'll give the new board a try, but I am not optimistic that I will enjoy the experience. I do hope that newly diagnosed patients will be able figure out the new board and get the support they need to deal with what's ahead. Perhaps having never known that there was something better will make that community seem just as good to them as this board has been for all of us.
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
Advanced Member
Posted Yesterday, 06:03 PM
This old site will be shut down on February 1st, and will not be visible as far as we know. Probably will show a broken URL. I would suggest if anyone wants to keep old posts, save them to your own computer instead of migrating them to the new Community site for now. Then maybe add them back in later if they are significant.
So this old site and posts will disappear on February 1st as far as I know, and not be visible again until old posts are migrated over (may take week or weeks). So if there are recent posts anyone cares a lot about, you might want to save them on your own computer.
What a fiasco ... there isn't any good reason for this site to disappear on Feb. 1 ... it isn't as if it is going to cost LLS anything to keep it visible ... LLS can simply disable the ability to post, while allowing access to all of the posts ... of LLS tells you differently, they are lying to you ...
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
Advanced Member
Posted Yesterday, 06:12 PM
Buzz,
Not accurate. The former Web Developers will either shut down or not because they would require payment to keep it open.
Advanced Member
Posted Yesterday, 06:32 PM
Buzz,
Not accurate. The former Web Developers will either shut down or not because they would require payment to keep it open.
Licensing fees are normally a one-time thing, paid in the beginning. LLS has already paid to use the Invision software. Invasion is not hosting the forum, LLS is. To transfer the promised three years of posts over, LLS is going to need to have access to the forum. So if the forum disappears on Feb. 1, how are they going to do that?
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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